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Vol 1 - UK Cystic Fibrosis Database

1. 31d 4jm 5i Date of this clinic visit Clinician initials Chin Specialist l Thm Js o Or Non specialist Hospital admissions since last clinic visit Status of long term administered therapies Onz Patient has not been admitted to hospital since last clinic visit C177 Patient has not received long term administer therapies Length of admissions days Drug received at some time since the Admissions Vem 7am Wim last clinic visit Gu Yes No Unknown For elective investigation ta hia nsi Y Y ry ie TTT lt Inhaled or nebulised beta agonist Om Om Cm Specify ne Om Inhaled or nebulised anti cholinergic Osn Owi Oms For chest infection 7 Aisy Oma Nebulised antibiotic Colomycin Os Oss Ois For bowel obstruction h20 21 i Sr SNE ORTER o Gentamicin Ow Diss Ois A 1251 For hacmoptysis a l Tobramycin Ow Om Om De For haematemesis 26 271 val Other Dn Oly Ops jeumothorax 4 SEU Din Oral antibiotic Os Orn Dis For other reason 32 a Ova Inhaled steroid Ow Ono Om r Specify E l Oral steroid Every day On Onos Chon Short term drugs since last clinic visit Altemate days Onos Oow Chon DNase Onw Ono
2. Social impact of CF in last period Total iiriBi8 6 days Off Work Ge SCOOT in he last Ono Does not attend school or work Oton None Ovoz Less than two weeks Opos Less than two months spun Oros None Otos Less than two weeks Opon Less than two months Toe Two months or more RS How many tities did the patient visit a CF clinic in the last petiod Number of clinic visits in last period 108 Number of other clinics this patient attends for shared care Lro Glucose tolerance in last period Onm Glucose tolerance test was not performed Oma Normal e g lt 8 mmol I Opa Equivocal e g gt 8 mmol I amp lt 11 mmol T Oma Diabetic e g gt 11 mmol T Clinical trials in last period iran Patient is not taking part in any clinical trial Diyes Patient is taking part in the clinical trial s below LTT TTT hn Treatment compliance in last period Do yo Consider the patient t6 be GK ate OF the fbllawing Dizo Non complier Diran Average complier i122 Does everything he she is told to do Most recent Chest X Ray in last period DiissiNo X Ray measurements made Northern Score preferred Award 0 4 points as below for each quadrant of the add up to four discretionary points for focal lesions ete ray total and 0 Normal no CF lung disease e
3. ie INCI IIMATHON Ialati L4 UK Cystic Fibrosis Database 6 Stick the patient identification iabel generated Patient Biography 1 of 1 Patient Number by the data entry software here if available Clinic Number Part no 44R PBF 1997 2 Clinician ma Genotype Your initials AM Cin Not done dt cog GES C37 Patient refused to be genotyped Today s date 4 day 5 month 6 year Please enter genotype exactly as reported by molecular biology laboratory Allele 1 38 monennenen anaana E Anez ATT T fe Month of birth BBL Age at diagnosis of Cystic Fibrosis Year of birth AI r Age at diagnosis Olla years nay months Sex at birth ecb Bi lil of Cystic Fibrosis Oio Female On Unknown or other Dua U Cakeewn O3 Meconium ileus needing surgery O4 Meconium ileus managed medically Osy Prolonged jaundice he Failure to thrive and or malnutrition 47 Steatorrhoea and or abnormal stools and or Father Mother 4 12 n3 White Ouna Ons Black African Ons Ou7 Black Caribbean Onsa Ono Black Other Org Ory Indian Ora Otz37 Pakistani Ora Ogs Bangladeshi Orsa O7 Chinese O8 O9 Asian Other Oro Og Other Ora Ois Individual preferred not to say malabsorption Ois Rectal prolapse Orsoy Sinus disease and or nasal polyps ws Lower respiratory infection Cjs1 Family history Cijs2 Screening Otsa Electrolyte imbalance Osa Infertility
4. UK Cystic Fibrosis Database User Permissions Browser UK Cystic Fibrosis Database User Permissions Browser You must not alter data without good reason 1 Choose a user identifier 2 Set user parameters Click on one of the codes below using the left hand Chose the operations that the selected user may perform mouse button to select a user m User may browse patient data I User may enter patient data administrator fmuhsin I User may amend patient data I User may transfer data I User may backup data ya Add a new user IT User may administer users I User may configure system Change user password Delete selected user Return to the main menu Figure 5 25 The user permission browser with the newly created user fiona muhsin selected Note that a new user has no permission to do anything You should set up their permissions as described in the next section 5 6 2 Setting user account permissions To set the permissions of user log into the system see 5 1 as administrator giving the appropriate password or as a user with permission to administer users Click on the users button on the main menu Figure 5 21 You will then see the user permissions browser Use the mouse to select the user whose permissions you want to set in the Choose a user identifier window in the top left hand quadrant of the user permissions browser For example to give the newly created user fiona
5. You should see UKCF Database 97 in the Program list OR Option 2 e Set up now completes the installation e When complete the message reads UKCF Database97 Set up was completed successfully e Click OK to exit set up e To check that the set up installation has worked click the Start button at the bottom left of your computer screen and select Programs You should see UKCF Database 97 in the Program list 2 2 2 Getting Started To start the system from your Desktop see Fig 2 1 in sec 2 2 Installing the Data Entry Software on your computer click Start Then click Programs and select UKCF Database97 Follow path to UKCF Database97 and click You will then be presented with the log in screen below 2 2 3 Completing the Installation As you have received your software pre configured your login name will be administrator followed by an eight character password The administrators password can be found on the letter which is enclosed with your installation disks CD ROM and Installation Guide and User Manual UK Cystic Fibrosis Database Enter the database U K Integrity check Part number 44R DES_ACCESS 1998 1 Data base TIO1HC Betad c 1995 1998 Cystic Fibrosis Audit Group Department of Child Health University of Dundee Dundee 001 9S United Kingdom Tel 44 1382 633919 Fax 44 1382 646783 WAN http vA ct org ukdatabase
6. Quit icon on the screen shown above Your system is now ready to use Please turn to the next section of this manual for a demonstration of how to complete the paper forms and enter information in the database 3 Patient registration biography and annual review This section will show you how to complete a paper patient registration biography and annual review form for a sample patient You will then be shown how to enter this information into the data collection system 3 1 Patient registration This section will first demonstrate how to complete the paper patient registration and then take you through entering this information into the data entry software UK Cystic Fibrosis Database Patient Registration 1 of 1 Please write all letters in BLOCK CAPITALS within the boxes Date of birth The year of birth is deliberately not requested in this section Day of birth l 3 Month of birth LL Sex at birth Os Male Oe Female Or Unknown or other Family name Please supply below the LEGAL FAMILY NAME AT BIRTH i e THE NAME ON THE BIRTH CERTIFICATE AT BIRTH of the individual The name should be written using the standard romanised form of the name if applicable e g for Chinese names and any accents or apostrophes should be ignored e g O Conner should be written OCONNER Surnames consisting of more than one word should be written as one long word with no punctuation e g Hibbet Smith s
7. Please enter a user name and password below to gain entry to the system Your user name and password are allocated by your database manager as described in the user manual Username administrator Password Enter the database Quit Reproduction prahibied without writen permission fram copyright hakker h may bea crim inal ofemse la im part ar gapar his solware in cenain urisdictians Partians distributed under license fram CFIDS IDE TM i alrademart d Ascam Tech Ld Paen righs d Ascam Tech Ud given in EP JP US Figure 2 3 The login screen For pre configured software enter the word administrator in the Username entry box followed by your eight character password which can be found on the letter which accompanies your software Do not forget this password To complete the installation follow the 5 points below very carefully 1 Remember to keep a note of the eight character password supplied Your local data security depends on this password remaining secret Click the Enter the database button 2 Create a new user account for each person who will use the system for data entry see section 5 6 1 Adding a new user account 3 Next set the user account permissions for each person using the system see section 5 6 2 Setting user account permissions 4 Exit the main menu of the system by choosing the Log out of system icon on the main menu 5 Quit the software by choosing the
8. meals meals meals 7 _ H2 antagonist E0 u43 D p43 O p44 O 45 M 146 Proton pump inhibitor 3 Mame of drug 147 Cap Time taken Before During After Unknown per day meals meals meals ET k Joas C pag O ps0 C 0s1 52 N acetylcysteine Lactulose Gastrograftin OO mC OURS deoxycholic acid Taurine OEC TAB Next field 11 Insulin SHIFT 748 Previous field SPACE Select item j i Oral hypoglycaemic f NB EVERY FIELD MUST HAVE AN ENTRY CURSOR KEYS Choose item Figure 3 32 The message displayed upon clicking the floppy disk icon at the bottom right hand of the screen 20 90 0900 4 20 O98 3900 4 GEO 4 Guide to completing questions 4 1 The Patient Registration and Biography Forms The purpose of the Patient Registration Form is to generate a unique patient registration number based upon the answers given on this form such as day of birth month of birth sex at birth legal family name etc The patient number is produced from this time invariant information and remains the same throughout for each patient The Patient Biography Form stores information such as date of birth sex at birth ethnicity genotype etc which can be used to produce clinic level analysis This information is entered only once and is stored for perpetuity 4 1 1 Data collection protocol 1 Complete the patient registration form 1 of 1 2 Use the information on the form to calculate a patient identification numbe
9. 61 days Back Ment Figure 3 28 Completing the first snapshot data routine clinic visit data entry screen UK Cystic Fibrosis Database Routine Clinic isit 1a of 1 E UK Cystic Fibrosis Database 44 cDF 19972 Snapshot Data 1a of 1 Please use the following codes inthe large boxes where necessarn Unknown Mot done Mot applicable Patient Code G 04G MB648 6BHHC 7G51 L ny Clinic Code P171F 2 Date of last clinic visit Hospital admissions since last clinic visit E Biday ouent 1997 Piyee Iv 12 Patient has not been admitted since last clinic visit Lengi of admissions days Date of this clinic visit lchadin Sudan S 3 admissions 19 Erin 04 rIGmonth E year For elective investigation i tta i a C na Clinician initials 10 Specialist Pee E 15 aM Je 11 Nor specialist For chest infection a Jan C ns NB EVERY FIELD MUST HAYE AN ENTRY f For bowel obstruction Jos ro C 21 Use either the mouse or the keyboard to enter data S See section 4 of the user manual for further details For haemopty sts Jea Pa 3 m 24 IFusing the keyboard type data in the fields press nee eee k Jesi L Jes z 27 Cancel SFACE to select checkboxes arow keys then For pneumothorax Jes ro C Bo SPACE for radio buttons pressing Enter at the end of each item SHIFT TAB and TAB move you For other reason 1 2 O p3 gt backward and forward between fields Specify SA iet F
10. All trademarks acknowledged Contents 1 PREFACE 2 INSTALLING THE SOFTWARE 2 1 Unpacking 2 2 Installing the Data Entry Software on your computer 2 2 1 Set up of UKCF Database 2 2 2 Getting Started 2 2 3 Completing the Installation 3 PATIENT REGISTRATION BIOGRAPHY AND ANNUAL REVIEW 3 1 Patient registration and biography 3 1 1 Sample patient history 3 1 2 Completing the paper forms 3 1 3 Calculating the UK CF Patient Number 3 1 4 Entering the biographical data 3 1 5 Filling the paper forms 3 2 Annual Review 3 2 1 Summarised patient history 3 2 2 Completing the paper forms No computer 3 2 3 Entering annual review data on computer 3 2 4 Entering Snapshot Data Routine Clinic Visit data 4 GUIDE TO COMPLETING QUESTIONS 4 1 The Patient Registration and Biography Forms 4 1 1 Data collection protocol 4 1 2 Guide to the sections and questions 4 2 The Annual Review Form 4 2 1 Data collection protocol 4 2 2 Guide to the sections and questions 4 3 The Snapshot Data Routine Clinic Visit Form 4 3 1 Data collection protocol 4 3 2 Guide to the sections and questions AR version 5 USING THE DATA ENTRY SOFTWARE 5 1 Entering and leaving the system 5 2 The main menu 5 2 1 New patient number Record Death 5 2 2 Patient biography form 5 2 3 Annual review form 5 2 4 Snapshot form 5 2 5 Custom functions 5 2 6 Transfer data to central UK CF Database 5 2 7 System buttons 5 2 8 Printing Additional Patient Registration Label
11. Figure 3 10 The three pages of the UK CF database annual review forms The questions on pages one two and three of the annual review forms all refer to the status of the patient since the last annual review All the questions refer to the last period which is between the last annual review and the current annual review If a patient has not received an annual review before then the last period should be the last twelve months Most of the questions on page three of the form and the whole of the Snapshot Data form see Section 3 2 4 Entering Snapshot Data collect snapshot information describing the patient health and therapies at the time of the annual review There are two versions of the Snapshot Data form The version shown in figure 3 11 is used by the majority of the United Kingdom The version shown in figure 3 12 is used by Scottish CF clinics for more detailed data collection If you would like to use the Scottish forms please contact the national data centre for further details Unknown Not done X Not applicable UK Cystic Fibrosis Database Snapshot Data 1 of 1 Please use the following in the large boxes if necessar LEE DLT DLL LLG eee Patient Number the data entry software here if available 2 Part no 44R SDF 1997 2 Clinic Number Date of last clinic visit
12. If you are backing up to removable media e g zip disks ensure that the media is in the drive and click on the OK button Backing up your system may take a few seconds or many minutes depending on the amount of data in your system and the speed of your computer When the backup has been successfully completed you will see the message shown in Figure 5 29 UK Cystic Fibrosis Database Backup Completed Figure 5 29 The Backup complete message box 5 8 1 Restore from Backup Should your computer system crash data can be easily recovered from zip disk Your data is stored on zip disk as an exact replica of your own database To do this you should insert the zip disk you want to recover the data from open it up and copy and paste the contents into a new folder exactly the same method as recovering from a floppy disk Please ring technical services in Dundee if you require help 5 9 Importing Information Figure 5 31 The import icon on the Main Menu Screen Import Occasionally data information may need to be sent from the Dundee data centre to the clinic s system In this event a member of the database team will contact you with further details on the use of this button 5 10 Browsing and deleting database table records THIS SHOULD BE DONE WITH EXTREME CAUTION AND IN EXCEPTIONAL CIRCUMSTANCES Should you need to delete records in the tables please ring the Dundee Data Centre on 01382 632596
13. Number of still births 97 Oiss Other evidence of mi as TTT 99 Social eee of CFi oil last iat C101 None C102 Less than two weeks Oinos Less than two months Onos Two months or more b p D BORO Wna di TEREE SERFS PRESS Sots ET Ea C106 Less than two weeks C107 Less than two months Re Two months ormore o Number of clinic visits in last period ho Number of other clinics this patient attends for shared care 110 Gluc ya 1111 Glucose tolerance test was not performed 0112 Normal e g lt 8 mmol l C113 Equivocal e g 2 8 mmol r amp lt 11 mmol O14 Diabetic e g gt 11 mmol r Please use the DOLAN in TA E boxes if necessary Unknown Not done X Not applic QO TAPING TIBI cly EEN h oH the patient identification label generated by the data entry software here if available Part no 44R ARF 1997 2 UK Cystic Fibrosis Database Annual Review 2 of 3 D116 Active list 1117 Reserve list Oj118 Currently being evaluated 0119 Rejected by transplant centre 120 Patient refused offer of transplant Transplant performed C121 Bilateral lung C122 Unilateral lung C123 Heart lung On24 Liver Clinicat trials in last period C128 Patient is taking part in the clinical trial s below LETT TT TTT TTT TTT FEET TT EEE ETT EEE 129 Treatment ODE in last period 131 Average complier C1
14. Oss Other Specify other reasons Ora Ogs Clinician preferred not to ask question ONLY THE WHITE TOP PAGE SHOULD BE SENT TO THE UK CF DATABASE Age at Diagnosis Note the system will not accept a value in this box gt 12 You will have enter this as 0l years O6months The data from the patient biography form now needs to be entered into the data entry software The data entry software will not allow you to complete either annual review forms or snapshot data forms for a given patient until a patient biography form has been completed and entered into the system From the main menu screen the New patient biography form option is selected 2 button from the top Figure 3 4 The first data entry screen then appears and should be completed as shown below Lik Cesta Fie Dalat Poe Ae peiliate lia ot 2 au Fibrosis DEE Nee s4R FEE 1063 2 Bs Blagraphy 18 of 1 Pinni Cocke de eSe oer ll E Clink Coste PF E clinician Details Ethnicity TEU rte pu ja Thi ni ale Le Fe ee aea caches dais Fire EE ey Ei jea pA jie RE pre p MA w MAh Date of birth gt Ta O Black Adie Tha dey ce birth ix deiam nal nequaied in thin nechon gt NA CP ach Canbbees Noh fo pF HA O fbioa Ta af bah MET pi mE ety Ci alii igale O a O Ga Rabon Sex at birth lt gt el 2S Berge Co h zr FH C E Chess kd 10 Fe a a RH LI Pirn i 7 CT liins or Other lt gt GO Gi Othe ran Co Ba G GA eevee petted ee is ae
15. Ta iiih beh prh p F at Pat oy H ie g d SHIFT TAR waTAD io gt i aia zr G G PH Ges eed a oe Peai Di tha caran Bahiani D Wki Mej ge p Fit Ham Figure 3 8a Page one of the electronic version of the patient biography form completed using sample patient data Note that you choose the patient code from a list of codes in a drop down box This means that you must calculate or register the patient number as shown earlier before you can enter the patient biography annual review or snapshot data To move to the next page of the form click on the black Next arrow pointing to the right in the bottom right hand corner of the screen IE pune phnom mehes Podiendt eget 16 ot 7 UK Cystic Fibrosie Database miata Patient Registration ib of 1 Patt Ce woe ETE Garigty pe E O Eada D pE Fiy pa E pjr iere aiia el paa Bij bea m ET O Pijar iay D TP Peed sendic ba ger pe Sas a pee a ee eee bey rd oe 1 ia F z Mo Scere 16 at i l ZIE ilir Age at diagnosis of Cystic Fibrosis z 7 ro a Tal Cte ste le eee F ij ol Sage ti appre ji Hdi Method of diagnosis of Cystic Fibrosis O dS Lier ie HH ecran Ber peeing pores a dad Ml carina kui Jita Fehi lege Diay F Fis mAAR phrin r J iH Pcl ar Erde Site eal eet ders Tau Cee ue E at F koe to hres areca rain SHIP TAD ard TAB to mhar te badi Phe O A715 besos sii rras iai ria Pe Pai Sed irrt tims b AN a ae aibei ealain em by Fe inil b t ee ma a al
16. This number will be used to identify all the patient data that you enter Once a patient has been registered you must complete a patient biography and then any annual review and routine clinic visit snapshot forms for patients Record Death Click the right hand pink button to record the death of any patient Select your clinic code and the patient identifier number from the drop down lists supplied and then complete Date of Death Cause of Death and Notes When finished click Done MS ee Hee T Pe aj HEAR i ei S ag E D O Pid O rE ETE D AEn i o T e ppe drh a Lar Dees dira Figure 5 4 b Record Death screens 5 2 2 Patient biography form Patient biography form Mew Browse amend Figure 5 5 The Patient biography form icons Use these buttons to enter browse and amend data from patient biography forms You will need to have registered a patient before you can use this function You can only enter a new patient biography form the left hand light blue button once per patient If you discover that you made a mistake while entering this data click on the right hand pink Browse amend button select the patient identifier number and choose the Amend button For further details see If you want to see which patients have had patient biography forms completed click on the right hand Browse amend button to view a list To see the values entered on the pati
17. i Taurine Chriss Drizer Orr A ern Al jies min days ei Weise _ FYC Oz samranon Exercise Tolerance Score i insulin Orna Irus Cwr sot FT iat 62 Xi ONO fsee Below sLikeg Olei ines i Oral hypoglycaemic Grs Oise Giri Exercise Tolerance Scors 0 Abla to do everything as well as others 3 Has to stoo when walking at own gace 2 Pancreatic enzymes of the same ace an the revel i 1 More breathless on hilts and Stars 4 Breathless on the slightest activity Name of drug E ian contemporanas 2 g washing dressing Capsules per day When Tuxen derore Dunpg Ateemeais Unknown 2 Can walk on tha level at own zace 5 Breathless at rest meas meals lags behind contemporanes E Grm Gen Ora Gin H y are oe Led 145 Most recent bacteriology culture result since last clinic visit Chie No bacteriology 5 inic visit i i 64 NO bacteriology performed since last cl Name of drug i i sar Pate of culture Caasues Ser gay When Tuxen Beroe Dunng arer meus Unknown i inek ued shat anpiy_ meas NENF PE TESIEN Ee i Gass Cni Criss Criss Ois Normal fora Crei Pseudomonas rugnosa Cim Burkholderta cepaciae tN Or Unknown result Oey Haemophilus influenzae Cis Staphylococcus aureus Ora MRSA Thank you for completing this form Please check that you have Cinsi Other Specify ALL other bacterta entered your UK CF Clinic Code and the patient s UK CF LIT ET ET TTT ETE TILT TT TT Database Numbe
18. the Main Menu screen appears WE Lyde lnem Dalshans dam Baer Pationt registragon Tarin Hew El Racord Death Padient ography form Ej Haw Ej Drs emer fienwal tawiew arm E Flew E3 siiceg 1 e iiL hLt Smapshod data bent Haws El Brosac amare Cesta nokon Baj D4 Fix Table Transfer data io cental OR Cyane Fibwoss Mainha kal lisar y Syam Backup 4 imga Labis Leg out of sem k Figure 3 4 The Main Menu screen Wanting to calculate a new UK CF patient number Clare clicks on the New icon on the patient registration form section of the screen top left button on the screen A replica of the paper form then appears as in figure 3 5 UE Lyri Fabci Daiei i UR Cystic Fibrosis Database E Paii Coie 0 F Hagin 2 iiR PRE 1277 2 H 2 i Patient Registration 1 of 1 iat ii HH i C BHG l Tyra C H HHO dea are apma bad plese mires jD bees decd Ths asar pet biria ba clic asheby rend rescesihesd Sex at bath Family name da pO Cites ieee rare i rected Cag of bath E 4 i EH ce F ama i Leya lenie res af berth i ed F dy Fei k Date of birth Warth of bath im Fi lirira oe iea E ALe ihi e ot lie res a a First initial fm Aj Leap et tial a bath ic receded et Laga ect etd a ra ot Glee e receded w H Oe et eel a ee Tro iria L5 Order in birth E jE inga bre ESET an a E T Country of birth JETE E i Towen of birth l limat St berth
19. Fibrosis Database routine clinic visit annual review snapshot forms You will need to have registered and entered a biography before you can use this function Choose the left hand light blue button to enter a new routine clinic visit form for a patient If you discover that you made a mistake while entering the routine clinic visit data click on the right hand pink Browse amend button select the patient choose the date of the routine clinic visit you wish to amend and choose the Amend button For further details see 6 3 Entering data If you want to see which patients have had routine clinic visit forms completed and on what dates click on the right hand Browse amend button to view a list To see the values entered on the form select the patient identifier number that you are interested in and the date of the visit then click on the Browse button 5 2 5 Custom functions Custom functions Et Bad IDs E Fix Tables These two custom functions perform diagnostic tasks Bad ID s will validate all patient numbers and print any that it finds that are not in the accepted format You should rarely need to use this Fix Tables should be used with extreme caution It will delete data held in your database tables Please ring the UK CF Data Centre before clicking this button Further guidance on this button is detailed in Sec 5 10 Browsing and Deleting Database Tables 5 2 6 Tra
20. Figure 3 8b Page two of the electronic version of the patient biography form completed using sample patient data Next complete page two of the electronic form If you need to return to the previous screen for any reason this can be done by clicking on the Back button in the bottom right hand corner of the screen When you are satisfied that all the patient details are correct click on the Finish button in the bottom right hand corner of the screen The message below will then be displayed UK Cystic Fibrosis Database csr Patient Registration 1b of 1 JUE Coitic Filters Dal abane j J i ce I Pism paved in databace Genotype w E dane P DIF Fieni d i ee UR oo Fianna arim parse aces PT fet Pare haria i O maSin kiez O Ei Bech nips rebalance Age at diagrasls of Cystic Fibras Ll aR erp ESTEN Ei jaiai eee LI G5 the gpk the meam nod drona tycoons n O HA rinn ms C 3 herera ber nard upa C 4 decorum ies managed resdcaby Typa daa m Hha Foi praded perry O Le Puke Biris ene A Pe aed o eh be ca Le 5 El a Fugue bo thara areia rarai SHIFT TAD svj TAB k miun ia akk The O ee es eee eee Bee age Pees haigh krah A i ihe a eee abe gt Thad T ba hs et Goan eheh pou pa i Figure 3 9 Patient biography information saved You have now successfully registered a patient and entered their biographical details into the data entry software The next section will tell you what to do with the paper for
21. General activity score Lees 25 Physical examination 21 25 Normal No cough Clear lungs No deformity Respiratory rate normal 16 20 Resting respiratory rate normal Rare coughing Minimal emphysema Clear lungs 11 15 Occasional cough Mild emphysema Respiratory rate slightly elevated Rarely localised crepitations Early clubbing 6 10 Frequent cough usually productive Moderate emphysema May have chest deformity Chest retraction Crepitations present Moderate clubbing OS Severe coughing spells Tachypnoea with tachycardia Extensive pulmonary changes May have signs of right heart failure Marked clubbing Physical examination score 137 25 Nutrition 21 25 Height and weig 16 20 Height and wei abnormal 11 15 Height and weight above 3 centile Abnormal stools Poor muscle tone with reduced muscle mass ibove 25 centile Well formed stools at 15 20 centile Stools slightly 610 Height and weight below 3 centile Abnormal stools Abdominal distension Flabby muscles os Marked malnutrition Protuberant abdomen Rectal prolapse Large foul frequent fatty stools Nutrition score 131 25 Chest X ray 21 25 Clear lung fields 16 20 Early emphysema Minimal accentuation of bronchovascular markings 11 15 Mild empysema with patchy atelectasis Increased bronchovascular markings 6 10 Moderate emphysema Widespread areas of atelectasis with superimposed areas of infection Minimal br
22. Nasal polyps whether treated medically or surgically should be indicated here if present 16 Allergic Bronchopulmonary Aspergillosis Refers to antibody positive and culture positive disease requiring steroids to suppress the inflammation 17 Asthma This field refers to bronchodilator induced reversibility of FEV 18 Pneumothorax requiring chest drain We are interested here in the frequency of this complication with respect to utilisation of inpatient hospital resources hence the restriction to those requiring chest drains 19 Massive haemoptysis Here we are restricted to more than 100cc s or such severity requiring transfusion in order to once again calculate the load imposed on hospital resources 20 Distal Intestinal Obstruction Syndrome Should only be ticked if the following features are present recurrent abdominal pain relieved by either gastrograffin administration treatment with enteral washout solutions or pain associated with X ray confirmed faecal masses in the right iliac fossa region 21 Haematemesis We have not specified a volume but will correlate this field with other indices of portal disease 22 GI reflux requiring treatment We realise that GI reflux is very common in CF but are interested in determining how many patients actually require treatment in the opinion of the clinician 23 Colonic stricture This is an ongoing monitoring question and this box should only be ticked if the patient
23. Singleton birth _ Order in birth if multiple birth 117 e g 2 if second of twins Country of birth Please supply the country that the individual was born in Country of birth Eau LL Town of birth Please supply the town that the individual was bom in Town of birth BRN SiT 0 L Thank you for completing this form UK CF Database Department of Child Heath University of Dundee Dundee D01 9SY 901382 633619 FAX 01382 845783 E MAIL ukdalabase 3 cf org Do not complete below this line UK Database internal use oe I l ji Le Stick iha patient dentiication label generated Patient Number LI BERENE Clinic Number 1 ot Figure 3 2 How the patient registration form should be completed for the patient described in 3 1 1 The UK CF Patient Number 1 is left blank as it is not yet known you will be shown how to calculate the number in section 3 1 3 Calculating the UK CF Patient Number The UK CF clinic number 2 is completed with the code allocated by the national centre when you registered your clinic It is very important that every form contains both patient number once known and the clinic code on every page Every section on the form indicated by a black vertical bar to the left of the list of questions has been designed such that at least one item in the section should be ticked or completed The dat
24. Unlock Menu Ei Please enter unlock key bo match EvodyF9G this can be obtained on line at Cancel i http if134 36 202 82fukcfdb PINGen asp or by phoning the UECF Data Centre on 01382 6352596 m Figure 5 32 Menu to permit access to tables You will be given a number to enter in the white box and click OK This will bring up the next screen 6 Amend Tables Menu The options on this menu should only be used by esperenced users to make changes to the underlying data where they belewe this to be inconsistent corupt for e ample when a patient has been accident registered twice Using a different interpretation of Town of Birth Glasgow vs Bellshill 2 IDs will exist for this patient Amend Biographical Data Amend Clinic visit Data Amend 4nnual Review Data Figure 5 33 Select table to amend or browse Select the table where you want to amend the data and click the open door icon A table with your data will be shown similar to the one below E PrivatePatientBiography Table You will see your data here Figure 5 34 Sample of table data displayed Use this table to browse your data and delete incorrect entries Please let the Data Centre know in order that they can keep their records synchronised with yours 5 11 What to do if the system reports an error First of all don t panic The software has been designed to fail safe it is most unlikely that you will lose any data In the exceed
25. You will need to have the data entry software installed before you proceed further Start the software as shown in sec 2 2 2 Getting Started You will be presented with the log in screen requesting you to enter a username and password Your local computer expert allocates user names and passwords when you install the software The figure shows claredewinton logging into the software UK Cystic Fibrosis Database Enter the database U K Integrity check Part number 44R DES_ACCESS 1993 1 Data base TIOTHC Betad 1995 1998 Cystic Flbrosis Audit Group Department of Child Health University of Dundee Dundee 001 9S United Kingdom Tel 44 1382 633919 Fax 44 1382 646783 WU http Nwww cf org ukdatabase Please enter a user name and password below to gain entry to the system Your user name and password are allocated by your database manager as described in the user manual Username claredewinton Password gt Enter the database Quit Reproduction prahibied withaut writen perm issianfram capyrigh hakder h may beacriminal diere ta im part ar ea part his solware in certain urisdictians Parias distributed under licere fram CFIDSS IDEM TM fa treademart d Ascam Tech Ud Patent righs d Ascam Tech Ud given in EP JP US Figure 3 3 User claredewinton logging into the data entry software Having entered her login details and clicking on the Enter the database icon the right pointing arrow
26. has had a barium enema confirming the diagnosis and or surgery 24 Barium enema looking for colonopathy Refers to the prevalence of disease that is suspected as being due to pancreatic enzyme induced colonopathy but turns out not to have been present 25 Gallbladder disease requiring surgery Self explanatory 26 Pancreatitis Should only be ticked if there is documented evidence of an elevated amylase or some other specific pancreatic marker in association with abdominal pain 27 Abnormal liver function tests Defined as an abnormal AST ALT and or 5 nucleotidase 28 Cirrhosis with portal hypertension This should only be ticked with ultra sound evidence of a fibrotic liver and or biopsy and documentary evidence of portal hypertension by the presence of varices or splenomegaly 29 Diabetes requiring insulin oral hypoglycaemic Should only be ticked where a glucose tolerance test has been performed and shown to be abnormal 30 Arthropathy This refers to pain and or swelling in the joints without evidence of other joint pathology such as rheumatoid ANF etc 31 Clubbing On clubbing we are particularly interested in the number of children and adults who definitely have no clubbing and wish to correlate clubbing positive individuals with other markers of severity 32 Raised IgG We are trying to correlate this with other markers of severity of CF 33 Cancer Please indicate if any evidence of cance
27. i e the last period should be listed Form 1 of 3 asks for details of drugs that the patient is taking This section of the form is the only practical way of trying to gauge what sort of treatment the patients are receiving at the time of the annual review 4 2 1 Data collection protocol e Stick a label on each sheet of the form ready for completion 1 Complete pages one two and three of the annual review form 2 Enter the data in the UK Database by doing one of the following a Using the data entry software and transferring the data electronically to the UK data centre see 5 5 Transferring data to the national centre or b Sending only the top white part of pages one two and three of the annual review forms to the national data centre or c Enter the data into your local data collection software which has been upgraded to be UK CF Database compatible and transfer the data to the national centre 3 Keep the yellow pages of the form in the notes as it is your record of the annual review visit The white copy should be filed centrally This file may be audited It should be forwarded to the UK CF Data Centre in Dundee when the data transfer is done electronically 4 2 2 Guide to the sections and questions We have divided this form into a number of different sections The first part of the annual review form 1 of 3 asks questions about what has happened to the patient with respect to complications what sort of long term ant
28. 18 Cmim Vahey peer oder et ies ered od aac Here Lira TAE Sh TAE bo once bahren mkh Figure 3 5 The details of the sample patient entered in the patient number calculator The information from the paper based registration form is then transcribed to the electronic form on the screen When all the data has been entered Clare clicks on the icon with the picture of the floppy disk bottom right hand corner of the data entry screen Upon pressing the disk icon the computer calculated the UK CF patient registration number and displays it on the screen If instead she wants to cancel the data entered she can click on the icon with the picture of a cross UK Cystic Fibrosis Database Patient Registration 2 of 2 UK Cystic Fibrosis Database Patient Registration 1 of 1 44h PRF 1997 2 Please use the following codes in the large boxes where necessancUnknown Motdone x Not applicable Day of birth Month of birth Sex at birth 5 Male E Female F Unknown or other E f cr Family name f 8 Legal family name at birth is recorded 9 Legal family name at time of diagnosis is recorded 10 Other family name is recorded Family name JOHNSON 11 ozis i recorded Order in birth M116 Singleton birth Order in birth if multiple birth L n7 Country of birth BG United Kingdom E Town of birth x i Town of birth BRISTOL 19 Enter values pressing Enter at the end of each Item Use TAB
29. 32 Does everything he she is told to do Northern Score preferred Award 0 4 points as below for each quadrant of the X ray total and add up to four discretionary points for focal lesions etc 0 Normal no CF lung disease evident 1 Mild Minimal increase in linear markings and or nodular cystic lesion up to 0 5 cm diameter 2 Moderate More pronounced linear markings and or more widespread nodular cystic lesions 3 Severe Prominent increase in linear markings profuse nodular cystic lesions large areas of collapse consolidation 4 Very severe Little or no area of normal seen dense infiltration Northern Score 134 20 and or Chrispin Norman score if done Please see the user manual for a description of the Chrispin Norman score Chrispin Norman score Figure 3 14 Page two of the UK CF database annual review form completed for the sample patient described in 3 1 2 Page three of the annual review form completed for our sample patient can be seen below Note that as for the patient registration form every section has at least one entry Please use the following in the A m if amai Unknown Not done X Not applicable Patient Number Clinic Number HIAIC BOLLE IS a Me Seaman score att review To siecle a a Shwachman score inadi up to 25 poin for each of the four sections listed below and total General activity 21 25 Full normal acti
30. 5 Northern Score 20 134 Total score a n40 4100 a Figure 3 25 Completing the eighth annual review data entry screen transcribed from page one of the annual review form UK Cystic Fibrosis Database Annual Review 3b of 3 ES UK Cystic Fibrosis Database aap apr joss Annual Review 3b of 3 Patient Code 004G M648 6HHC V G51 L 1 Clinic Code F171F E 2 Fat soluble vitamin plasma at review Employmentischool status at review f 141 Not measured 152 Pre school 142 Measured 153 At school Pubertal status at review a fab ies fates r i a newak 2 3 hours per week Patient s voice has broken Patient has had first period 157 Fart time work gt 5 i a i 7 158 Fulltime homemaker 159 Unknown Marital status at review Domicie at revicw 6 ting ie nae I First half of postcode 160 or town if unknown 147 Married ae 161 x 148 Separated Genotype at review fk 149 Divorced C 162 Not done C 163 Refused 150 widowed Allele 164 Allele2 165 151 Unknown Ceta MA Back Finish Figure 3 26 Completing the ninth annual review data entry screen transcribed from page one of the annual review form When you are satisfied that all the data has been correctly entered click on the picture icon with the floppy disk in the bottom right hand corner of the screen Upon completion of the annual review form you will be prompted to enter a Snapshot Data Routine Clinic Vis
31. Diez Not done 63d ioaym sy Diss Normal flora Oien Pseudomonas aeruginosa Oiss Burkholderia cepaciae Ois Unknown result Cmo Haemophilus influenzae Ory Staphyloccus aureus Orma Other Specify ALL other bacteria tT MRSA speci LL PELE LEER Status of long term administered therapies since last clinic visit Start date Tick if ongoing rreament End date Tick if marted today 1 Ops Beta agonist 4 Irs gor oO o M i i i o ai o Onon NSAID for arthropathy Opo NSAID anti inflammatory Oni N acetylcysteine Oi112 Lactulose Orm URSO deoxycholic acid Opis Taurine 11 Onz Insulin HHEH a hypoglyca as 12 Pancreatic enzymes When Taken Before meals During meals After meals Unknown Oum Ons Ou Onw m COO por day 131 132 When Taken Before meals During meals After meals Unknown Ons Ous Oms On cose T TT TTT sa Figure 3 12 The Scottish version of the snapshot data routine clinic visits form Page one of the annual review form completed for our sample patient can be seen below Note that as for the patient registration form every section has at least one entry Please use the following in the BIG aC if NIN IL Unknown Not done X Not applicable Patient Number te tt Te la UK Cystic Fibrosis Database GHICN ISD ikr Annual Review 1 of 3 by the data entry so
32. Number 1 and UK CF Clinic 2 fields completed It is best to stick the patient label on each sheet of every paper form before starting e Every question should have an answer e Text boxes see 5 3 1 3 must have a value or if unknown x a measurement was not done or be crossed out if recording a value in the box would not be applicable e e g a Name of a short term antibiotic should equal if not short term antibiotics have been prescribed See Sec 7 for default values on forms e Check boxes see5 3 1 4 must have all the applicable options ticked or else the decline option usually the first option in the group selected e Radio groups see 5 3 1 5 must have one and only one option ticked e If completing a two part paper form the white copy should be kept in a file the yellow bottom copy is for your reference 1 e in the notes e The open door icon at either the bottom right or bottom left of every screen takes to you back a level For example if you are browsing data it will abandon the record and take you back to the record browser box If you are trying to log in clicking on this icon will exit the software Figure 5 15 The open door icon 5 3 3 Data entry mainly using the keyboard Preferred Data entry using the keyboard is usually most appropriate when entering a batch of forms after a clinic It is vital if a question has not been answered on a paper form
33. Omo Length of course days SHORT TERM ANTIBIOTICS IV Oral Ico aco 230 NSAID For arthropathy Dom Oma Om trict vet 37 00 1 0 nj Dea Lung anti inflammatory dose Oma Oms Cime L ay ie asi an Olas H2 antagonist Oimn Oms Oms f pi LI o 00s ks x Osa Proton pump inhibitor Ono Onu Oua ALL OTHER SHORT TERM T N acetylcysteine Or Ona Oins Lactulose Omna Onm Ouz ia E5 aii Gastrograffin Ors Ono On Most recent laboratory and social data since last clinic visit Height ed PEF Days off work school URSO deoxycholic acid Ons Oms Oma 156 571 1581 59 reel Taurine Owa Owa um eLm litres Imin days Weight FVC Q saturation Exercise Tolerance Score 11 Insulin Dmna Ou Dimo r Jeo 7 m 621 831 see below JeL ikg litres h Oral hypoglycaemic Onm Ona Ona Exercise Tolerance Score 0 Able to do everything as well as others 3 Has to stop when walking at own pace 12 Pancreatic e 5 E of the same age on the level l l 1 More breathless on hills and stairs 4 Breathless on the slightest activity Name of drug Jisa than contemporaries e g washing dressing Capsules per day When Taken Before During After meals Unknown 2 Can walk on the level at own pace 5 Breathless at rest a meals meals lags behind contemporaries O Oma Oum Ons Or usi Most recent bacteriol culture result since last clinic visit E iology performed sice ast inie vin om m 64 No bacteriology performed since last clinic vi
34. Patient Biography Form The data entry software will not allow you to complete either annual review or snapshot forms for a given patient until a patient biography form has been completed and entered into the system Click the Yes button to take you to the Patient Biography screen The No button takes you back to the Main Menu UK C TOTE m okap inaring pide ai bwm for thas peni Ta cani chaa bo dip ha i d TA o pester bul member thal pou vall not ba able lo corpplets Snapchat chines viz HHS ID Seslanl or Arenal Reve lr i in pated url theii biagraphy detai hos baan medi laud pow doe be cr he paler beep ree Da a ced Horde Sex at ete m Em a 1G n beh plenae Dje im bih i akipita f an B Country of birth o im 2 Loge lirak iira ot eth oo corded TER Ste 3 Legal ism nara ai Gree of dayar ir reae Taw of birth CC P Ch thee brak rare ns wenden Toren of bari zF L 17 Ceen JOHKSOH Esta sila pirig Ene af the a of each L isn Ua TAB oe Shale TAB ip meres besten bij Figure 3 8 The message displayed prompting you to complete a Patient Biography Form 3 1 4 Entering the biographical data The next form which should be completed immediately after registering the patient is the patient biography form NB You will be prompted to complete this form after registration see Figure 3 8 Please use the following in the large boxes if necessary Unknown Not done X Not applicable
35. R Y563N pA 3121 2A gt G 435insA D993Y 11234V Q1100P S1251N Y569C ete 3121 2A gt T 4374 1G gt A E1104X 11269N Q1144X S1255P Y569D ee 3129del4 4374 1G gt T E116K 1148T Q1238R 1255X Y569H ieee 3131del15 4382delA E1321Q 1175V Q1238X S1455X Y577F OGSA 3132delTG 441delA E1371X 1336K Q1291H S364P Y913C ioe 3153delT 444delA E1409V 1506S Q1291R S42F Y917C eee 3171insC 457TAT gt G E193K 1506T Q1313X S466L Y919C TO ce 3195del6 460delG E193X 1539T Q1352H S466X C gt A 3196del54 541del4 E504Q S466X C gt G 3271 1G gt A 541delC E585X 3272 1G gt A 36 Not done If a patient has not been genotyped when this question is asked due to a the measurement not having been performed or b the results not being available when completing the form then only this box in this section should be ticked If measurement was not performed because the patient refused see then next question 37 Patient refused to be genotyped If the doctor requested that the patient be genotyped but the patient refused for whatever reason e g religious psychological etc then this option should be ticked 38 39 Allele 1 Allele 2 If a patient has been genotyped then the mutation should be written using standard notation see the table on the next page for a non exhaustive list If a mutation was unable to be typed by the genetics contractor then a value of should be recorded It is suggested that if an allele can be identified as coming from the mother the
36. Selecting the Transfer data to central UK Cystic Fibrosis Database from the main menu can do this See section 5 5 Transferring data to the national centre UK Cystic Fibrosis Database Routine Clinic isit 1b of 1 UK Cystic Fibrosis Database sap eprj9973 Snapshot Data 1b of 1 Please use the following codes in the large boxes where necessan Unknown Mot done x Not applicable Patient Code O04G M648 6HHC YGS1 L Clinic Code P171F 1 2 Short term drugs since last clinic visit aie meta te are AAi ENTRY n TAB M 12 Patient has not received short term drugs since last visit SPACE a nie tem CURSOR KEYS Choose ien SHORT TERM Length of course days ANTIBIOTICS WO Oral osteo 2 ndco 3 co Exercise Tolerance Score LIF pel mE el Bey 40 0 Able to do everthing as well as others of same age a dJ 1 bore breathless on hills and stairs than contempoanes booo tan l T E mak usi 46 2 Can walk on level at own pace lags behind contemps aJe al wf soy pi 52 3 Has to stop when walking at own pace on the level 4 Breathless on the slightest activity eg washing dressing ALL OTHER SHORT TERM DRUGS 5 Breathless at rest 53 Most recent laboratory and social data since last clinic visit Height FEW PEF Exercise Tolerance Score see abovey x 1803 54 Jem 207 55s k 6sm M 5A PT Weight FY O2 saturation Days off woark echool a gt 58 ke 53 litres ko 60
37. TERM ANTIBIOTICS IV Oml 1 co 2 co 23co LATTA ATT 53 Most recent laboratory and social data since last clinic visit Exercise Tolerance Score Height FEV PEF B cm UL BIS tits 2315 rnin Eee orea OR a cm litres pE l min see e A Weight FVC cer Days off work school 58 59 60 161 hig Ly kg fi uf litres days Most recent bacteriology culture result Date of culture since last clinic visit sick ali that apply I t62 Not done 63 d 64yn 651y Oiss Normal flora j67 Pseudomonas aeruginosa Cies Burkholderia cepaciae O69 Unknown result Oro Haemophilus influenzae Opn Staphyloccus aureus Orm Other Specify al tt TT Ti TT Specify 74 Status of long term administered therapies since last clinic visit Start date Tick if ongoing treatment End date Tick if starved today Tick if ended today Mi 78 i 1 Ors Beta agonist man 01123 Oral hypoglycaemic eae E ARN a Sele meee rs 12 Pancreatic enzymes When Taken Before meals During meal After meals Unknown On27 Oj128 D129 Oj130 Capsules Brand per day i31 132 When Taken Before meals During meals After meals Unknown O33 Ous Ons O36 Capsules Brand per day 1371 Figure 3 17 The Scottish version of the UK CF database snapshot data routine clinic visit form completed for the sample patient described in 3 2 1 3 2 3 Entering annual review data on computer Do not use the computer unless you are sure that the form
38. Vol 1 Installation guide and user manual a United Kingdom Cystic Fibrosis Database November 1998 ACCESS 1997 WARNING It is up to you to ensure you are not breaking the law Known export issues Export of the software from the United Kingdom may need an export licence from the United Kingdom Department of Trade and Industry Export of the software from the United States of America will infringe ITAR export controls and is considered to be illegal exportation of munitions Import export and use of this software in France needs a permission to use encryption waiver from Ministry of Justice under the medical use exemption programme Intellectual property issues e You may not use this software or any accompanying materials for commercial purposes e Use of this software before 20 September 2000 in the United States of America will infringe US Patent 4 405 829 unless you negotiate a license with RSA Data Security Inc 10 Twin Dolphin Drive Redwood City CA 94065 Telephone 1 415 595 8782 Information in this document is subject to change without notice Companies names and data used in examples are fictitious or used with consent unless otherwise noted No part of this document may be reproduced or transmitted in any form of by any means electronic or mechanical for any purpose without express written permission from the copyright holder 1998 Department of Child Health University of Dundee United Kingdom
39. a and infection Lobar atelectasis and bronchiectasis Chest X ray score Ni 25 Guide to severity of Cystic Fibrosis indicated by Shwachman score Severe 0 40 Moderate 41 55 Mild 56 70 Good 71 85 Excetlent 86 100 Total Shwachman score aaa 100 E Vou Caor Are THiS Fiero 11 15 6 10 0 5 General activity score 16 20 11 15 6 10 0 5 Physical examination score Nutrition 21 25 16 20 17 15 6 10 0 5 Nutrition score 11 15 6 10 0 5 aiai A deia eA FORM EE Males Females Patient s voice has broken Patient has had first period gt Cisa Yes gt Ona No amp Marital status at review Cunas Single child or never married Dis Living together C 147 Married Otsa Separated Ous Divorced C180 Widowed Ons Unknown Employment school status at review Children C152 Pre school i153 At school Adults Ons Higher education D155 Unemployed Onse Fuil time work gt 37 hours per week C is7 Part time work Onsa Full time homemaker usa Unknown Domicile at 0 COO First half of eee eTA or town as specified below if postcode unknown Genotype at review Fitts2 Not done Onsa Patient refused to be genotyped Please enter genotype exactly as reported by molecular biology laboratory Appendix Appendix 1 What to do if you already have Access 95 Databases on your computer and wish to install the UK CF Database APPxX 1 What to do if you h
40. a CF clinic inthe last period backward and forward between fields eee Number of clinic visits in last period 04 m09 Number of other clinics this patient NB EVERY FIELD MUST HAYE AN 5 7 ENTRY Back Mert Figure 3 23 Coinplenine he sah mae review data entry screen transcribed from page one of the annual review form UK Cystic Fibrosis Database Annual Review 2c of 3 E sais si Fibrosis Database aap aprj9972 Annual Review 2c of 3 1 USE the following codes in the large boxes where necessarncUnknown Mot done x Mot applicable e Q04G M645 6HHC YG51 L 1 Clinic Code P171F 2 Transplant status in last period Clinical trials in last period Total number of days off work or school in the last period f 127 Patient is not taking part in ary clinical trial 015 Not referred for tranzplant in last period f 129 Patient is taking part in the tral z below 117 Reserve list 118 Currently being evaluated 120 Patient refused offer of transplant Treatment compliance in last period Transplant performed Do you consider the patient to be tick one of the following O 122 Unilateral lung fe 116 Active list 129 119 Rejected by transplant centre 121 Bilateral lung l 30 Non compen 123 Heart lung i 32 Does everything hei ig told to do 124 Liver O 125 Other as specified below Rad 126 NB EVERY FIELD MUST HAVE AN ENTRY Am gt Figure 3 24 Completing the seventh annual re
41. a on the patient registration form Figure 3 2 is used by the program to calculate the patient s UK CF patient number This number is unique to the patient and is automatically calculated no matter where that patient registers within the United Kingdom providing they always give the same answers to the questions on the patient registration form The questions are straight forward although it is important to note that the family name and given initial of the patient should be that of the patient when they were born This is because hopefully the patient will give the same answers to these questions at anytime in the future irrespective of whether they change their name because of marriage etc Once a UK CF patient number has been calculated the data entry program will print out this number onto sticky labels see Sec 1 Preface Note on Label Specification for type of labels to be ordered You can then attach a label to the patient registration form and insert the remaining labels into the patient s notes 3 1 3 Calculating the UK CF Patient Registration Number Now that you have completed the paper registration form you need to calculate the UK CF patient number This demonstration will illustrate using the data entry software how to generate a unique patient number Centres who do not wish to install the UK CF software can have the UK CF data centre generate a unique patient number by telephoning the centre on the number shown on the form
42. are more than three different courses of drugs given then choose the three most important and include these only 4 3 2 3 Most recent laboratory and social data since last clinic visit For adults the first time that you fill in this form we require a height for following visits if a height is not done the value x Not done should be recorded The exercise tolerance test ranges from 0 to 5 and is indicated on the form For children we require a height at this visit The remaining boxes are self explanatory The exercise tolerance score ranges from 0 to 5 and is indicated on the form The oxygen saturation should be recorded at rest clearly for children it is likely to be normal and for this reason is often not done 4 3 2 4 Most recent bacteriology culture result since last visit Please tick which organisms are present and the date of that culture Emerging organisms can be picked up in this manner in the specified box 4 3 2 5 Status of long term administered therapies since last clinic visit Once again we are trying to do a snapshot to see what sorts of drugs are being administered which we can correlate with other parameters of the disease This section is in tick boxes and simply defined as yes no or don t know The remaining questions are self explanatory Question 7 the anti inflammatory use of non steroidal antibiotics refers to their use as described by the recent paper in the New En
43. ave already have Access 95 Databases on your computer and wish to install the UKCFDatabase After you have installed the UK CF Database which is Access 97 runtime version you will find the following 1 You can still use your Access 95 database only if you go in via Start Programs Access Open Database Database name 2 If you try to open your own existing databases either by double clicking in Explorer or via an icon on your desktop you get a message similar to This database was opened using an earlier version of Access Do you want to e Convert it Open it AT THIS STAGE DO NEITHER JUST EXIT This is because the system mdw file that the old Access 95 databases use is now overwritten by the newly installed runtime Access 97 This is a known bug in Microsoft Access Simply copying the old Access 95 version of the sytem mdw file appears not to work The cure is to force your old Access 95 databases to open with the Access 95 you already have installed on your machine as follows Open Windows Explorer Find your old Access 95 database that was working well until the UKCF Database was installed Single click to highlight it With the mouse pointer in the highlighted area hold down the shift key and right click the mouse In the pop up menu select Open With In the Open With window that appears find Msaccess and click to select it Check the white box below MW Always use this prog
44. before changing it and if you need help ring technical services in Dundee 5 7 1 1 Via zip disk To transfer via zip disk you need to change the Default data transfer file see Fig 5 27 above You need to substitute the c of c ukcfdb exported mdb to whichever letter represents your zip drive This is because the default is set to place a copy of the transfer file on your C drive If you need help ring technical services in Dundee 5 7 1 2 Via Internet Under construction If transferring via the Internet or modem you will need at least five megabytes of hard disk space free for the data transfer routine s temporary file 5 7 1 3 Via modem Under construction If transferring via the Internet or modem you will need at least five megabytes of hard disk space free for the data transfer routine s temporary file 5 7 2 Default backup file The path and file name you enter in this field set the name of the file which is created when a user clicks on the Backup button on the main menu The system is configured with the default set to backup to c ukcfdb backup mdb as shown in figure 5 27 field Default Backup File However you are strongly advised to change this to backing up your system to a zip disk You should do this by changing the C of C ukcfdb backup mdb to the letter that represents your zip drive as you did for the transfer file above If you need help ring technical services in Dund
45. ce of fertility as specified NB EVERY FIELD MUST HAVE AN ENTRY Co ee ancel Back Mest Figure 3 22 Completing the fifth annual review data entry screen transcribed from page one of the annual review form UK Cystic Fibrosis Database Annual Review 2b of 3 Ea UK Cystic Fibrosis Database gap aprjo973 Annual Review 2b of 3 Please use the following codes in the large boxes where necessarncUnknown Mot done x Not applicable Patient Code O04G M648 6HHC 7 G51 L Et Clinic Code P171F BS Social impact of CF in last period Glucose tolerance in last period Total number of days off work or school in the last period f 111 Glucose tolerance test was not performed C i 00 Does rr not attend school or work 012 Normal feg 8 mmol ie 13 Equivocal fez 8 mmoll lt 1 mumolT C t i Less haa two weeks gt 114 Diabetic eg 11 nemo f 103 Less than two months O 104 Two months or more How many days wae the patient in hospital because of their Use either the mouse or the keyboard to enter data CF in the last period See section 4 of the user manual for further details f 105 None Cr 106 Less than two weeks IF using the keyboard type data in the fields press SPACE to select checkboxes arrow keys then 107 Less than two months SPACE for radio buttons pressing Enter at the 108 Two months or more end of each item SHIFT TAB and TAB move you x How many times did patient visit
46. confirmed the diagnosis The molecular biology laboratory genotyped Michael as being homozygous AF508 For the purposes of this demonstration assume The patient was registered in clinic P171F Dr Anil Mehta completed the forms on the 1 January 1996 Clare de Winton will be entering the forms into the data entry system Now go to the next section to see how to complete a paper form for this patient 3 1 2 Completing the paper forms We will now complete the paper patient registration form for the patient described in 3 1 1 Sample patient history The patient registration form 1 of 1 should be completed as demonstrated in Figure 3 2 Note that the numbers in square brackets in the text refer to the numbers in square brackets on the form UK Cystic Fibrosis Database Patient Registration 1 of 1 Please write all letters in BLOCK CAPITALS within the boxes Date of birth The year of birth is deliberately not requested in this section Day of birth Uu Month of birth oB Sex at birth Zis Male Ole Female Or Unknown or other Family name Please supply below the LEGAL FAMILY NAME AT BIRTH i e THE NAME ON THE BIRTH CERTIFICATE AT BIRTH of the individual The name should be written using the standard romanised form of the name if applicable e g for Chinese names and any accents or apostrophes should be ignored e g O Conner should be written OCONNER Surnames consisting of more than one wo
47. correct a mistake in a record you will need to choose the Figure 5 3 When you select one of these options you will see a screen similar to Figure 5 18 UK Cystic Fibrosis Database Clinic Visit Form Browser UK Cystic Fibrosis Database Clinic Visit Form Browser You must not alter data without good reason 1 Choose a patient identifier 3 Browse or amend the record Click on one of the codes below using the left hand mouse button to select a patient Q34K 1JEL DJSH HGA1 C Q04G M648 6HHC YG51 L Browse a clinic visit form Amend a clinic visit form WARNING YOU SHOULD NEVER NEED TO AMEND A ini iei FORM IF YOU ARE UNSURE OF VALUES ON A FORM 2 Choose a clinic visit FIND OUT WHAT THE CORRECT VERSION IS BEFORE List format daymonth year clinic code If you have ENTERING THE DATA EXCESSIVE USE OF THE AMEND selected a patient identifier but no records are listed below OPTION MAY RESULT IN DATA BEING EXCLUDED then no clinic visits have been entered for the patient FROM THE MAIN DATASET AS UNRELIABLE Return to the main menu Figure 5 18 A Clinic Visit Form browse amend record Browser The currently selected record is that of the visit on the 1 January 1996 by the patient with the identification number OQQ4G M648 6HHC YG51 L Choose the patient identifier of the record you want to browse in the portion of the screen labelled 1 Choose a patient identifier All the clinic visits recorded in the system will then a
48. d it useful to consider the following top ten tips for efficient use of the software devised by our testers UK CF Database Top Ten Tips The password on the login screen is case sensitive When entering your password for the first time note whether the password was entered in upper or lower case Every field on every screen form must be completed Either always use the Tab key or always usd the mouse to select fields If you click with the mouse in a text or number box the cursor will appear where you clicked Always click on the left hand side of such a box or use the Home key to move the cursor to the left hand side If you carry on typing the text will automatically be left aligned but you may run out of room Radio buttons groups of circular buttons are choice of one questions only one button can be selected from the group Tick boxes square boxes are individual questions and therefore as many as are required can be selected Text entry boxes with a down arrow to the right of the box require that you pick one choice from the options that appear when you click on the arrow If you want to delete text in a text box make sure the cursor is to the right of the text to be deleted and use the backspace key top right hand corner of most keyboards to delete the text Error message due to invalid data being entered can occur either when you have just entered data or when you wish to move
49. de unknown 161 Genotype at review C163 Patient refused to be genotyped Please enter genotype exactly as reported by molecular biology laborato sree Alb OI OT ia ah aie Bhat Ueki clo A SNAPSHOT FORM Dies Shwachman Score not applicable for an adult cross out as shown The Snapshot Data form completed for our sample patient can be seen below Note that as for the patient registration form and annual review forms every section has at least one entry Please use the following in the large boxes if necessary Unknown Not done X Not applicable Ge tee bHACIN GIFU UK Cystic Fibrosis Database a Sn o dina oriry software har i valabio 2 Part no 44R SDF 1997 2 Date of last clinic visit Snapshot Data 1 of 1 falo Aah Patient Number Clinic Number Date of this clinic visit Clinician initials 02 aig Sto Specialist d 4 Tym UA 8 9 Orn Non specialist al admissions since last clinic visit Status of long term administered therapies Ana Patient has not been admitted to hospital since last clinic visit G7 Patient has not received long term administer therapies y Length of admissions days Drug received at some time since the issi 1 adm 2 adm gt 3 ad a paaa Admissions 23 adms last clinic visit 1 Gh Yes No Unknown For elective investigation 13 14 ns v Eoo mee ae Specify 16 il aa One Inhaled or nebulised anti cholinergic Dis Oez Di
50. drome O21 Haematemesis O22 GI reflux requiring treatment Otz Colonic stricture Ojz4 Barium enema looking for colonopathy C25 Gallbladder disease requiring surgery Dead No cultures were paul in last period Sputum culture Cough Swab culture Normal flora Ole Oies Staphylococcus aureus 167 Cies C26 Pancreatitis O27 Abnormal liver function tests O28 Cirrhosis with portal hypertension C29 Diabetes requiring insulin oral hypoglycaemic Oiso Arthropathy Oi Clubbing Ortz Raised IgG Oiss Cancer C js4 Had IV port replaced Haemophilus influenzae Cies Cro Pseudomonas aeruginosa Or Ope Other pseudomonas species Ora Ora Burkholderia Cepaciae Ors Crs Aspergillus O7 Cie Candida Ceo Other organism as specified the following other complications Figure 3 13 Page one of the UK CF database annual review form completed for the sample patient described in 3 1 2 Page two of the annual review form completed for our sample patient can be seen below Note that as for the patient registration form every section has at least one entry Patient Number roe Clinic Number Oiss Oral supplements Oiss Nasogastric Cjs7 Gastrostomy Css Parenteral lan C Child ANDOR no evidence a E fertility d detected Cjs2 Self or partner is currently pregnant Number of spontaneous abortions 93 Number of induced abortions 94 Number of pre term births 95 Number of full term births 96
51. e Little or ng area of nomnal seen dense infiltradon Oiio Two months or more How many times did the patient visit a CF cinic in the last period Number of clinic visits in last pertod Thee Number of other clinics this patient attends for shared care 1 Glucose tolerance in last period Northern Scare ALM isa 20 Orn Glucose tolerance test was not performed Onia Normal e g lt 8 mmoi I Lii Equivocal e g 23 mmol l amp lt Li mmol ri andor CArispin Norman score if done Please see che user manual for a desenpten of the Chospin Nomman score l Chrispin Norman score x 135 al ec in a Paw w FT mamal Poy Patient Number FELT E LT Clinic Number Rega Please use the following in the large boxes if necessary Slick the patient ktentification label generated by the data entry software here if aveilabie Pan no 44R ARF 1997_2 Unknown Not done X Not applicable UK Cystic Fibrosis Database Annual Review 3 of 3 4 Fat soluble vitamin plasma values at review Orar Not measured Oiz Measured ig a ft Pubertal status at review To omnes a Shwachrian score pes up to a see for each of the four sections listed below and total General activity 21 25 Fuil normal activity Goes to schoo regularly 16 20 Lacks endurance Tires at end of day Good school attendance Tires easily after exertion May rest during day Fair school attendance Dyspnoeic after
52. e on Label Specification 5 2 9 Log out of system Log out of system Figure 5 11 The Log out of system icon Clicking on this standard open door icon returns you to one level back in the system in this case the log in screen described in iene nen ean oa When you click on this button the current person using the system is logged out and will be required to re enter their user name and password before accessing the system again 5 3 Entering data The best demonstration of how to enter data in to the software is given in Sec 3 Patient registration biography and annual review We strongly recommend that you work your way through the example to become familiar with the data entry procedure In addition everyone who will collect data on forms should practice completing the forms from the case studies presented in the example 5 3 1 Conventions There is inevitable jargon used to describe various aspects of data collection forms and software Here we present a brief glossary of the terms we will use 5 3 1 1 Fields Fields are the places on the forms or the computer screen where data can be entered Each field is uniquely identified by its field reference a number in square brackets to the right of the area where data can be entered 5 3 1 2 Sections Sections are collections of fields which answer a single question For example Figure 5 14 demonstrates a section called Sex at birth which ascertai
53. ed to as drive D E F or Q If you are installing from a CD ROM E in the Open data entry box in the Run window you should type e setup exe without the quotation marks If the CD ROM is not called E you should replace the first letter of text in the quotation marks with the letter used to refer to your CD ROM then click OR 2 2 16 UKCF Database 97 Set up When programme asks to close any open applications click continue as you should have followed Sec 2 2 there should be no open applications If however you have any applications open then click Exit set up Close all applications and start again from section 2 2 e Set up now starts e When asked which folder to use accept what set up suggests and click OK e Set up then asks to select the kind of installation Typical Custom or Compact Click Typical At this point one of two options will occur depending on the configuration of your machine Option 1 e A window now appears UKCF Database 97 Restart Windows The message reads as follows You need to restart Windows to complete the installation etc e Click the Restart Windows button Your PC will then reboot screen goes black for a short time and starts up again e To check that the set up installation has worked click the Start button at the bottom left of your computer screen and select Programs
54. ee 5 7 3 Importing data The data entry software will come configured only to enter data collected at your centre If you intend to enter for another clinic contact technical support who will provide a clinic list update disk which you load using the Import a list of clinic codes button 5 7 4 Repairing a system If the internal system configuration tables get corrupted or you get locked out of the system contact technical support who can unlock tools for resolving some situations 5 8 Backing up the system NB Backing up the system should not be confused with transferring data to the National Data Centre You should safeguard your data on a regular basis at least once a week preferably once a day by using the Backup system option on the main menu This will create a copy of all your patient user and system data on zip disk which will allow you to recover your data if necessary To backup your system click on the Backup icon on the main menu A message similar to the one below will appear rarer aon E FEF a Pata ne g E a ap z E Abad fo Bachup too wiheide barkupa hi ap ee meted check DE ase Paiti bi a Coninas finn al ter Sraeahal data hadi e Per m Hiria in Custer tunojn on Bad IDs Ej Fim Tables Transfer data to coetial UA Getic Fibrosi Matabi n B wer Spatem tial Sarku Al mpn a Labels Lagaw of syatim Li Figure 5 28 The backup database message box
55. ee Dundee DD1 9S United Kingdom Tel 44 1382 633919 Fax 44 1382 646783 VV http si cf org ukdatabase Please enter a user name and password below to gain entry to the system Your user name and password are allocated by your database manager as described in the user manual Username claredewinton Password Enter the database Quit Repraductian prahibied withau writen permissianfram capyright hakder h may bea criminal diere ta im par ar gapan his sowang in certain urisdictians Parian distributed under licemefram CFIDSS IDEM TM fa tredemart d Ascam Tech Ud Patent righs d Siscam Tech Ud given in EP JP US Figure 5 1 The log in screen Enter your user name and password as allocated by your system administrator see 5 6 Administering Users Note that both the user name and password are case sensitive The password will appear as a series of asterisks e g to prevent someone observing the password you enter If you mistype your user name or password the system will not let you in and you will see the message shown in Figure 5 2 One of the most common causes of not being able to log into your system is having the E on Log in tailed You have not supplied a walid username and or password Please try again Figure 5 2 The message seen if you mistype your user name or password Once your user name and password have been authenticated you will see the main menu Please refer t
56. eet k Phe Tee Pee ml Import a het of potent numbers Decl daba tansha meib Figer diik Impunt a bet ol dines coder Thats hennie botha raira cenie vin miare or orade iE Wi gaT pohe ae Conve be aid Cord r ahii Pa palh of the diia iard Ae a ri el in Aspe Syctem Lan oni be uniocked bet leohri i rt niara ance commend ine Epp ip s TA ee 1b dures soothe em hamde conar Ti Haham to the anin Hig ii anole N 19 uee some eee Figure 5 27 The System Configuration Browser We will assume you are an IT specialist for the rest of this section If not please contact technical support See Sec 2 for address 5 7 1 Data transfer There is currently only one method of transferring data to the National Data Centre in Dundee via zip disk We recommend this option for several reasons but primarily because of the size of files being transferred and ease of interpretation The system is configured with the default set to back up to c ukcfdb exported mdb as shown in Figure 5 27 field Default data transfer file This will place a copy of your database on the C drive However you are strongly advised to change this to backing up your system to a zip disk You should do this by changing the c of c ukcfdb backup mdb to the letter that represents your zip drive The drive letter of your zip drive shown next to Zip Removable Drive in Windows Explorer will be E for most users but may vary Please check
57. ent biography form select the patient identifier you are interested in and click on the Browse button NB Patients must have their biographies entered into the system before you can enter clinical details for them 5 2 3 Annual review form Annual review form BEN Browse amend Figure 5 6 The Annual review form icons Use these buttons to enter browse and amend data from pages one two and three of the UK Cystic Fibrosis Database annual review forms You will need to have registered and entered a biography before you can use this function Choose the left hand light blue button to enter a new annual review form for a patient If you discover that you made a mistake while entering the annual review data click on the right hand pink Browse amend button select the patient identifier number choose the date of the annual review you wish to amend and choose the Amend button See 5 3 Entering Data If you want to see which patients have had annual review forms completed and on what dates click on the right hand Browse amend button to view a list To see the values entered on the annual review form select the patient identifier number that you are interested in and the date of the visit then click on the Browse button 5 2 4 Snapshot form Snapshot data form Browse amend Figure 5 7 The Snapshot form icons Use these buttons to enter browse and amend data from page one of the UK Cystic
58. er You must not alter data without good reason 1 Choose a user identifier 2 Set user parameters Click on one of the codes below using the left hand Chose the operations that the selected user may perform mouse button to select a user mijohnson gitamehta M User may enter patient data administrator fmuhsin T User may browse patient data TH User may amend patient data TT User may transfer data T User may backup data Add a new user gt User may administer users I User may configure system Change user password AMRY Delete selected user lt Return to the main menu Figure 5 22 The User Permissions Browser Important points to note are e the list of currently defined users in the top left hand quadrant of the window e buttons to add new users change user passwords and delete users in the bottom left quadrant e the permissions of the currently select user none is selected in Figure 5 22 so they are all greyed out The standard open door icon in the bottom right of the screen will return you to the previous screen 1 e the main menu We will demonstrate how to use each of these functions by example in the rest of this section 5 6 1 Adding a new user account The data entry software when first installed contains a single user whose username is administrator the password of which can be found on the letter accompanying the CD This account should only be used to administer user accounts and should
59. eriod Oin Asthma Di Patient does not have an IV port One Pneumothorax requiring chest drain ise Patient has an IV port Dys Massive haemoptysis gt 240cc in 24hrs or Oise Received no IV antibiotics in the last period transfused Des Distal Intestinal Obstruction Syndrome fete Number of courses Total number of days Den Haematemesis Mainly home IV s pa Dea GI reflux requiring treatment Mainly hospital IV s je fear Dis Colonic stricture Organisms cultured in the last period Den Barium enema looking for colonopathy gganism Guituired in the last period and taken from Dis Gallbladder disease requiring surgery ies Pancreatitis Sputum culture Cough Swab culture Dien Abnormal liver function tests a eae Normal flora Ds Dei i Sirthosis wil ortal hypertension as j p ce Pa Staphylococcus aureus Den Den es Diabetes requiring insulin oral hypoglycaemic EE ic a Haemophilus influenzae Ds Dre Disa Arthropathy Pseudomonas aeruginosa Onn Ora Dion Clubbing Other pseudomonas species Ora Dra Dez Raised IgG Burkholderia Cepaciae Ors Ors Dios Cancer ae a spergillus hirn ive Disa Had IV port replaced ee eee Candida Cra Dro Dos Developed the following other complications Other organism as specfods Eley e Cee CT
60. erred not to say If the individual declined to suggest a category then this option should be ticked 34 35 Clinician preferred not to ask question If the clinician preferred not to ask the patient s ethnicity then this option should be chosen 4 1 2 13 Genotype This section records the genotype if known of the patient For example from the Cystic Fibrosis International Data Standard 1996 based on information supplied by Cystic Fibrosis Genetic Analysis Consortium AF508 1898 3A gt G 3272 26A gt G 552insA E60X 1556V Q1411X S489X G542X 18984 5G gt T 3272 4A gt G 556delA E664X 1618T Q1412X S492F G551D 1898 73T gt G 3272 54del704 557delT E692X 1980K Q151X S4X 621 1G gt T 1918delGC 3272 9A gt T 574delA E730X K1060T Q207X S50P R1162X 1924del7 3293delA 591del18 E822K K1177R Q220X S50Y R117H 1949del84 3320ins5 605insT E822X K14X Q237E S5491 A1507 2043delG 3359delCT 6214 2T gt C E826K K166E Q290X S549N AD192 2055del9 gt A 3419delT 6214 2T gt G E827X K68N Q2X together S549R A gt C AE115 2113delA 3423delC 621G gt A E831X K710X with R3W S549R T gt G AF311 2118del4 3425delG 622 1G gt A E92K K716X Q30X S912L AL1260 211delG 347delC 622 2A gt C E92X K830X Q359K T360K S912X MaRS 2141insA 3495delA 624delT F1052V L1059X Q39X S945L O 2143delT 349942T gt C 657delA F1074L L1065P Q414x S977P an 2176insC 3499 6A gt G 681delC F1286S L1065R Q493R T 10861 ace 2183AA gt G 3556insAGTA 711 1G gt T F311L L1077P Q493X T12461 A 2184delA 359
61. erted a blank zip disk Click OK to start the data transfer and notice that the cursor changes to an hour glass When the cursor returns to normal the transfer is finished This will happen very quickly in most cases Now post the disk along with the corresponding copies of the paper forms which were used to enter the data in your software to the address shown in section 2 for the UKCF Database team NB Whilst you should safeguard your data by taking regular back ups see 5 8 Backing up the system Pg 60 do not confuse this option with your data transfer to the national centre see 5 5 Transferring data to the national centre Pg 54 5 6 Administering users The data entry software requires that individual users identify themselves to the system with a unique user name and password which identify a user account The administrator of a system can specify which users can perform which operations for example entering data or exporting data This section describes how to create new user accounts change user account s password delete user accounts and limit what functions individual users can perform From the main menu choose the Administer users icon shown below E liser Figure 5 21 The users icon on the main menu You will then be presented with the User Permissions Browser shown below UK Cystic Fibrosis Database User Permissions Browser UK Cystic Fibrosis Database User Permissions Brows
62. et oak Ant staphyloceccal Oua eT Please tick aif complications that occurrad in the last period nti aceadepaaal Oun Cus Cha C no Had no complications in last period Clin Elevated respiratory rate at rest Anu haemophilus Ciso Cisi Cisay Other oral angbioucs Quz Regular coughing at rest C12 Chronic pseudomonas infection gt 2 solates year Cna Chronic staphylococcus aureus gt 2 isolates vear Cisi Nasal polyps Tick a fl antibiotics administered inthe fast periods Qis Patient does not have an IV port Cire Allergic Broncho Pulmonary Aspergillosis O7 Asthma Ciis Pneumothorax requiring chest drain Cosa Patient has an fV pon Oiss Received no V antibiotics in the last period Route Number of courses Torti number of days Mainly home IV s dd lololo lolol Mainly hospital V s OO O00 Dls Lies Colonie siricture Organisms cultured in the last period Qes Barium enema looking for colonopathy Please tick ail organisms Cultured in daar gen and indicate where the samples were taken frome DE Crs Massive haemoptysis gt 240ce in 24hrs or transfused Cza Distal Intestinal Obstruction Syndrome Che Haematemesis Cia GI reflux requiring treatment Chest Gallbladder disease requiring surgery Cites No cultures were performed in last paced C es Pancreatitis Sputum culture Cough Swab culture C27 Abnormal liver Function tests Normal flora Cissi Fresi Lra Cirmhosis with porta
63. ftware here If available Part no 44R ARF 1997 2 LS within the ee antibiotios in n last ssh Clinician details Your initials A Today s date nan day all month NACE 6 year Date of Review EO cay Bh monn AIG 7 day 8 month 9 year Otis Colistin Ois Gentamicin O46 ss Received the following other nebulised antibiotics ANAT ANAC ETT Tobramycin Pre infection Post infection 4 4 Prophylactically Continuously Intermittesitly Anti staphylococcal Oua Ous We Anti pseudomonal Ou Css Oiss lea Had no P Ea in last aia On Elevated respiratory rate at rest Anti haemophilus Oiso Ois1 C js2 Other oral antibiotics Onz Regular coughing at rest O13 Chronic pseudomonas infection gt 2 isolates year O14 Chronic staphylococcus aureus gt 2 isolates year Ous Nasal polyps intravenous al antibiotics in last One Allergic Broncho Pulmonary Aspergillosis RIVER REE PEEM red in the last period O17 Asthma On F Patient does not have an IV port Ois Pneumothorax requiring chest drain Oise Patient has an IV port Ons Massive haemoptysis gt 240cc in 24hrs or T 1159 Route Number of courses Total number of days Mainly home IV s PTL TLL ha nie hospital V s 62 63 Received no IV antibiotics in the last period transfused O20 Distal Intestinal Obstruction Syn
64. g 1996 not as two e g 90 4 1 2 11 Sex at birth The sex at birth questions 9 11 include a value of unknown or other in question 11 One of these three boxes must be ticked Question 11 is an internal validation check for the database 9 Male If the patient was male at birth then only this box should be ticked in this section 10 Female If the patient was female at birth then only this box should be ticked in this section 11 Unknown or other If the sex of the patient at birth was unknown or indeterminate for medical reasons as opposed to not being recorded due to administrative problems then only this box should be ticked in this section 4 1 2 12 Ethnicity We would like to find out the proportion of patients who are not of purely white Caucasian origin The single option which the patient feels best describes their ethnicity should be ticked The ethnic categories are taken from the Higher Education Councils recommended categories for the UK population 12 29 Specify ethnicity If the patient strongly identifies with one of these ethnic categories then the appropriate category should be ticked If the patient is uncertain or considers that more than one category describes them best the 30 31 Other option should be ticked 30 31 Other This option is chosen when the patient does not fit neatly into one of the ethnicity categories listed in questions 12 to 29 82 33 Individual pref
65. gland Journal of Medicine Tick in this section only if you are following their protocol Subsection 12 Pancreatic enzymes name the drug how many capsules are taken per day and tick whether they are taken before during or after the meals If the patient is on more than one kind of drug please enter the second name as indicated 5 Using the Data Entry Software This section of the manual will show you how to use the data entry software If you have any problems you should contact your local computer expert If they are unable to help contact the national technical support centre at the address given in section 2 5 1 Entering and leaving the system Before reading this section please make sure you have installed the software having followed the instructions in section 2 Installing the Software Having installed the software you should start it by Pressing the Windows 95 NT 4 0 Start button at the bottom left hand corner of the screen selecting Programs and choosing the UKCF Database 97 option you created during the installation process Once you have started the data entry software you will be presented with a log in screen inviting you to enter a user name and a password UK Cystic Fibrosis Database Enter the database U K Integrity check Part number 44R DES_ACCESS 1998 1 Data base TIO1HC Betad 1995 1998 Cystic Fibrosis Audit Group Department of Child Health University of Dund
66. gt C 3906insG A561E G480D M1137R R347C W1282X oT 2790 1G gt T 394delTT A800G G486X M1137V R347H W1310X sates 2790 2A gt G 4005 1G gt A C225R G544S M12101 R347L W1316X rG 284delA 4006 19del3 C276X G550R M152V R347P W19C CA 2869insG 4006 61del14 C524X G550X MII G gt A R352Q W361R GK 2907delTT 4010del4 C866Y G551S MII G gt T R553G w401X TG 2909delT 4015delA CF40kbdel G576X MIK R553Q W496X ETN 296 12T gt C 4016insT CF50kbdel 1 G628R G gt A MIV R553X W57G einer 296 1G gt C 4040delA D110H G628R G gt C M244K R560K W57X CRTA 296 2T gt C 4048insCC D1152H G673X M265R R560S W79R sea 297 28insA 405 1G gt A D1154G G85E M348K RS60T W79X ek 297 2A gt G 4054 3A gt C D1168G G85V M9521 R709X W846X1 T 297 3C gt T 405 4A gt G D1270N G9IR N1303H R74W W846X2 ee 299 1del32 406 10C gt G D1377H G970R N13031 R75L W882X faeacie 3007delG 406 1G gt C D192G H1054D N1303K R75X Y1092X C gt A T ae 300delA 406 1G gt T D192N H1085R N418S R764X Y1092X C gt G GT 3041 1G gt A 406 2A gt C D443Y H139R N66S R766M Y109C ve 304 1delG 406 6T gt C D44G_ H199Q PILIL R785X Y1182X AIG 3056delIGA 4114ATA gt TT D572N H199Y P140S R792G Y122X OTIA 306delTAGA 4172delGC D579G H620P P2058 R792X Y247X E EEE 306insA 4173delC D579Y H939D P574H R851X Y301C RIIGA 3100insA 4218insT D614G H949R P5L S108F Y304X iltiG sc 3120 1G gt A 4271delC D648V H949Y P67L S1159P Y563C Reon 3120G gt A 4279insA D836Y 11005R POOL S1196X Y563D AT 3121 1G gt A 4326delTC D985Y 11139V Q1071P S1235
67. h See 18 Town of birth Please supply the town that the individual was born in Oio Legal family name at time of diagnosis is recorded Cio Other family name is recorded E IT di L Town of birth _ ji 119 Thank you for completing this form UK CF Database Department of Child Health University of Dundee Dundee DO1 9SY 01382 633619 FAX 07382 645783 E MAIL ukdatabase ct org Family name Do not complete below this line UK Database internal use Patient Number LI lent identical eral ed by the data antry sofware nere f available art no _ 44R PRF hon la 2 Part PRF 1997 2 Clinic Number Figure 3 1 The patient registration form is used to calculate a unique patient identification number and is stored by your clinic as a record of which patient identification numbers have been allocated to which patients 3 1 1 Sample patient history The fictitious patient below will be used to demonstrate the system Michael James Johnson name at birth an adopted Caucasian male was born in Bristol UK as a singleton birth on the 16 March 1971 Diagnosed as having Cystic Fibrosis CF at 18 months he was referred to a CF specialist as a result of presenting with a lower respiratory infection Further examination by the specialist confirmed the lower respiratory infection and found failure to thrive A positive sweat test
68. hould be written HIBBETSMITH if the legal family name at birth is unknown then the legal family name at the time of diagnosis of Cystic Fibrosis should be recorded If legat family name at birth or diagnosis of Cystic Fibrosis is unknown then the sumame at the time of filling this form in should be used un Note that It Is Important that every effort is made to obtain the legal name at birth to prevent multiple registrations in the database and to allow us to track patients who change clinics Oie Legal family name at birth is recorded First initial Please supply below the FIRST LETTER OF THE GIVEN NAME AT BIRTH of the individual e g if named Claire Jane Katherine Johnson the letter C should be recorded As for the family name if the given name at birth is unknown then the name at time of diagnosis of Cystic Fibrosis should be used or as a last resort the first Initial at the time of completing this form should be used Ouz Legal first initial at birth is recorded Ous Legal first initial at time of diagnosis is recorded Ous Other legal first initial is recorded First initial Cha Order in birth Please indicate whether the patient was born as a singleton or as one of a multiple birth twins triplets etc Country of birth Please supply the country that the individual was born in Orns Singleton birth Order in birth if multiple birth L417 e g 2 if second of twins Country of birt
69. ibiotic treatment the patient is receiving whether the patient is receiving intravenous treatment and what organisms have been found This theme is continued in the remaining parts 2 of 3 and 3 of 3 It is extremely important to ensure that when a piece of information is not known that you say so Do not guess We would much prefer if it was indicated that it was not known or not available rather than having a guess Each guess contaminates the data 4 2 2 1 Annual Review 1 of 3 The initial nine boxes are to be completed as for the earlier parts of the form 4 2 2 2 Complications in the last period 10 Had no complication in last period Particularly aimed at making the form easy to complete for children Tick here if no complications in last period 11 Elevated respiratory rate at rest Refers to a respiratory rate of more than 60 per minute in the first year of life and more than 40 per minute between one and seven years of age and more than 25 breaths per minute thereafter 12 Regular coughing at rest Refers to troublesome cough of such frequency and or severity that it causes a disturbance embarrassment to either the patient or the family Used as a marker of airway irritability 13 Chronic pseudomonas infection If this was isolated on three or more occasions per annum please tick this box 14 Chronic staphylococcus aureus Tick here if isolated on 3 or more occasions per annum 15 Nasal polyps
70. igure 3 29 Completing the second snapshot data routine clinic visit data entry screen UK Cystic Fibrosis Database Routine Clinic isit 1c of 1 UK Cystic Fibrosis Database gap eprj9973 snapshot Data 1c of 1 Please use the following codes in the large boxes where necessan Unknown Mot done x Not applicable Patient Code 004G MB648 6HHC YG51 L ny Clinic Code FIFO Most recent bacteriology culture result Yes 2 Nebulised antibiotic Colomycin CO cs Date of culture Gentamicin M 62 Not done t631day f 4imonthy Ji65Kyear Tobramycin C C 66 Normal flora 67 Ps aeruoinosa O 68 Burk cep Other 5 oio TO RO Ms D 69 Unknown C 70 Haemophilus O 71 Staph aur Oral antibiotic C 72 Other specify ALL other bacteria C 73 MRSA Inhaled steroid Alternate days status of long term administered therapies i Drug received since last clinic visit Yes Mo 9 7 9 T iS D 02 0 48 390008 g 5 6 DNase 1 Inhaled or nebulised beta agonist TAB Nest field Inhaled or nebulized anti cholinergic O SHIFT TAE Previous field SPACE Select itern NB EVERY FIELD MUST HAVE AN ENTRY ee ee es Figure 3 30 Completing the third snapshot data routine clinic visit data entry screen UK Cystic Fibrosis Database Routine Clinic Visit 1d of 1 UK Cystic Fibrosis Database gap pcy api9961 Routine Clinic Visit 1d of 1 Please use the following codes inthe large boxe
71. ination Nutrition and Chest X ray and then total the score at the bottom For adults enter BMI if known for the Nutrition section of the score 4 2 2 18 Fat soluble vitamin plasma values at review 4 2 2 19 Pubertal status at review Have been carefully chosen to be markers of mid puberty in males and end puberty in females If the patients voice is in the process of breaking do not enter yes we will catch that on the following years review 4 2 2 20 Marital status at review Self explanatory 4 2 2 21 Employment school status at review 4 2 2 22 Domicile at review These questions a allow data to be analysed by geographical region 4 2 2 23 Genotype at review See 4 1 2 13 Genotype 4 3 The Snapshot Data Routine Clinic Visit Form This is the part of the form where we look at what is happening to the patient at the time that they are seen in order to try and sample the status of the whole of the UK CF populations treatments and health 4 3 1 Data collection protocol L 2A Stick a label on each sheet of the form ready for completion Complete the one page routine clinic visit form Enter the data in the UK Database by doing one of the following a Using the Microsoft Access based data entry software and transferring the data electronically to the UK data centre 5 5 Transferring the data to the national centre or b Sending only the top white part of the page to the national data centre or c Enter the data in
72. ingly unlikely event that you do data loss should be limited to the single patient visit or details you were entering at the time the error occurred Except for data validation errors i e you entered an incorrect value in a field for example 45 as the day of birth you should report all errors to technical support so we can fix the problem and ensure that you are not inconvenienced again 6 Case studies Every member of medical staff who will complete data forms for the national database is requested to complete paper forms for at least one of the case studies from the pack the national centre will send you These forms should be sent to the national data centre so that we can accept data from these members of staff who will be internally identified by their initials Please ensure that each member of staff uses a different pair of initials For your own records you may wish to use the list below to note who has completed which case studies Date completed Section 7 Default Data Values on Forms Note There are no default values on the Patient Registration Form gy ag gee ee a SE SIS og eet of ec Cee ce opt eles Bos Tas E ME MESERGAUOTE LOE Al Zii biology laboratory PET coro minha Ha CELLET EP cease use the following in the large boxes if necessary Unknown Not Patient Number PE LIEE EOL AErE Ts ZENAR Sdcx he zaban identiicalion iabe generaled Clinic Number done X N
73. inic visit Clinician initials others of the same age own pace on the level Ono Specialist 1 More breathless on hills and stairs 4 Breathless on the slightest isid Tm shy 191 Oj11 Non specialist than contemporaries activity e g washing dressing Hospital admissions since last clinic visit Length of admissions days 2 Gan walk on the ved al com pace Beeatiess at raet 1 adm adm Dai lags ind contemporaries tick ent 3 sasha ie For elective investigation 12 3 Om fT iT TLL Fatiem ig speci TTO h 9 L years For chest infection Lha Lin O For bowel obstruction A9 po Oen For haemoptysis 03 a Oe For haematemesis 251 2 Oen For pneumothorax 28 29 Opo For other reason EN z Dos Specify l LITI I l lw Short term drugs since last clinic visit Length of course days SHORT TERM ANTIBIOTICS W Ort Ico co 2300 PEP oem CC a 35 Ope pn 38 Do ki Dua0us LI fas Da 44 47 Dieses s Oa T ALL OTHER SHORT TERM DRUGS Most recent laboratory and social data since last clinic visit Height FEV PEF Exercise Tolerance Score 154 I 155 I 156 I see above A cm litres 1 min Weight FVC Oz saturation Days off work school 138 I 9 160 i 61 kg litres days Most recent bacteriology culture result Date of culture since last clinic visit sick ai shat apply
74. insT 711 3A gt C F693L L1254X Q525X T3381 SCA 2184insA 3600 5G gt A 711 3A gt G F87L L127X Q552X T388X o hee 2307insA 3600G gt A 711 3A gt T G103X L165S Q685X T5821 DISTIN 2347delG 3601 17T gt C 711 5G gt A G1061R L206W Q890X T582R eee 2372del8 3601 2A gt G 712 1G gt T G1069R L227R Q98R T665S irode 237insA 3659delC 852del22 G1123R L320F Q98X V1190P edna 241delAT 3662delA 875 1G gt A G1127E L320V R1066C V12121 G 2423delG 3667del4 875 1G gt C G1244E L327R R1066H V1397E odk 2522insC 3667ins4 876 10del8 G1244V L346P R1066L V232D ARAG 2556insAT 3724delG 876 14del12 G1249E L375F R1066S V317A eee 2566insT 3732delA 905delG G1249R L558S R1070Q V322A Hier 2603delT 3737delA 936delTA G126D L568X R1070W V456F edd 26224 1G gt A 3750delAG 977insA G1349D L571S R1158X V520F isdie 2711delT 3791delC A1006E G149R L610S R117C V5201 13 ideiCT 2721del11 3821delT A1067T G178R L619S R117L V5621 pine 2734G gt AT 3849 10kbC gt T A120T G239R L633P R117P V562L CSA 2751 3A gt G 3849 1G gt A A1364V G27E L719X R1283K V569X ge 2751G gt A 38494 4A gt G A141D G27X L732X R1283M V920M s ddA 2752 1G gt T 3849G gt A A309D G314E L88S R170C W1063X GT 2752 26A gt G 3850 1G gt A A349V G314R L88X T gt A R258G W1089X one 2766del8 3850 3T gt G A455E G330X L88X T gt G R297Q W1098R AIAG 2767del8 3860ins31 A46D G392A L927P R31L W1098X 1343 SG 2789 43delG 3898incC A534E G458V M1101K R334Q W1204X ina ose 278945G gt A 3905insT A559T G480C M1101R R334W W1282R ini OER 2790 1G
75. it form for the patient as shown below UK Cystic Fibrosis Database Annual Review 3b of 3 E UK Cystic Fibrosis Database 44P ARF 19973 Annual Review 3b of 3 Please use the following codes in the large boxes where necessancsUnknown Notdone x Mot applicable Microsoft Access c Record saved in database Y ould you like to enter a snapshot i data form for this patient Droker 143 Yes gt 144 No Marital status at review Domicile at review i i o a d j First half of postcode 160 or town iF unkno 47 Married o 161 x 148 Separated Genotype at review Ba 149 Divorced gt 162 Not done FO 163 Refused i 050 Widowed Alelet 164 Alelez 165 151 Unknown Delta F508 ei detanrsos Back Finish j Figure 3 27 The message which appears when the data has been successfully stored in the database 057 Fart time work 158 Full time homemaker 055 Unknown Click on the Yes button if you wish to enter a snapshot data routine clinic visit for the patient For our sample patient we will click on the Yes button 3 2 4 Entering Snapshot Data Routine Clinic Visit Data Entering snapshot routine clinic visit data is the same as for the annual review forms This section shows the screen you will encounter when entering this data Note data input into the UK CF database along with a copy of the accompanying paper forms must be transferred to the UK CF data centre every three months
76. itial We need to know the first letter of the given name or Christian name 4 1 2 6 Order in birth section 16 17 Singleton birth Order in birth if multiple birth Order of birth refers to whether we have a single child or twins triplets etc Please indicate in the case of multiple births the order in which the patient was born 4 1 2 7 Country of birth 18 Country of birth Country of birth should be indicated to ensure international compatibility of data 4 1 2 8 Town of birth 19 Town of birth Town of birth is used increase the pool of available patient identification numbers Patient Biography Form 1 UK CF Patient Number This question appears on all UK CF Database forms and refers to the unique identification number which will be allocated to a patient when you have completed the Patient Registration form For the Patient Biography Form a label should be stuck here with the patient s UK CF number and clinic code 2 UK CF Clinic This question appears at the top of all UK CF Database forms and refers to the unique identification number which your clinic was allocated when you initially registered with the UK CF Database All correspondence between yourself and us has this number If you are unable to find it please call the UK CF Data Centre on 01382 633919 or fax us on 01382 645783 4 1 2 9 Clinician details This section collects information allowing the person who completed the form to be identified s
77. l hypertension Staphylococcus aureus ene es Miast Diabetes requiring insulinoral hypoglycaemic Haemophilus influenzae Cisal Cre Citso Arthropathy Pseudomonas aeruginosa r Cra Oir Clubbing Other pseudomonas species Opx Drs Otsa Raised IgG Burkholderia Cepaciae Orsi Drs Css Cancer Aspergillus Clr Orsi Oaa Had V port replaced Candida ee Ciso Other organism as specified Ghar Maz n Not done X Not applicable UK Cystic Fibrosis Database Annual Review 2 of 3 Please use the following in the large boxes if necessary Unknow Patient Number PTT EEL ELT LTTE a FELT IL Cii N b SUCK if pant cenificaison lata gerne in umber try hes Cha ay sofferma hara of aeaa C Sart t A AA E og Supplemental feeding in last period Transpiant status in last period Tok a supplemental feeding administered in the fast period Co Received no supplemental feeding in last period Ces Oral supplements Cins Not referred for transplant in last period ai n Oma Active list Qnin Reserve list Cies Nasogasiric Oo Currently being evaluated Oen Geasrostomy Cms Rejected by transplant centre Cisa Parenteral Ciro Patient refused offer of transplant Transplant performed Crey Bilateral lung Opn29 Unilateral lung Oji23 Heart lun Evidence of fertility in last period 5 Complete or Botts patient and partner Please indicate i hace i feet cca ERE R O24 Liver feet Self or par
78. l the UK CF Data Centre on 01382 633919 or fax us on 01382 645783 4 1 2 2 Date of birth 3 4 The day of birth of the patient and a number representing the month the patient was born e g 04 April 4 1 2 3 Sex at birth 5 Male if patient was male at birth then only this box should be ticked in this section 6 Female if patient was female at birth then only this box should be ticked in this section 7 Unknown or other If the sex at birth was unknown or indeterminate for medical reasons as opposed to not being recorded due to administrative problems then only this box should be ticked in this section 4 1 2 4 Family name 8 9 10 Legal family name at birth at diagnosis at other time is recorded Indicate whether the Legal family name at birth 1 e that recorded on the birth certificate has been entered If this is not available then the family name at the time of diagnosis preferred or some other family name is recorded in 11 Family name For example if Michelle Johnson was born Michelle Smith Smith would be the family name recorded 11 Family name See above 4 1 2 5 First initial 12 14 Legal first initial at birth at diagnosis at other time is recorded Indicate whether the first initial at birth 1 e that recorded on the birth certificate has been entered in or the first initial at the time of diagnosis or some other first initial is recorded in 15 First initial 15 First in
79. mber by he data oniy softwar hare avaata BI Pang RARE 10072 Nebulised antibiotics in last period Tick all nebulised ai ministered in the last period O in Received no nebulised antibiotics in last period Ops Colistin Your initials L E 3 Ops Gentamicin Dyo Tobramycin rl Today s date arany LL fe ona L LTT deus Diu Received the following other nebulised antibiotics Date of Review ane ae cameo HH Oral antibiotics in last period Tiek alf oral antibiotics adrnia t period Os Received no oral antibiotics in last period Pre infection Post infection Prophylactically Continuously Intermittent Complications in the last Period Anti staphylococeal Oa Oe Cua tick all complication laa Anti pseudomonal Omn Om Os O no Had no complications in l st period Aitt Haemophiiua Oa Oe Clee Oyn Elevated respiratory rate at rest Other oral antibio Da Oy Den Opa Regular coughing at rest Oia Chronic pseudomonas infection gt 2 isolates year 65 Ona Chronic staphylococcus aureus gt 2 isolates year Ops Nasal polyps Intravenous IV ani tics in last period Ors Allergic Broncho Pulmonary Aspergillosis Tiek alr IV antibiotics adininistered in the tast p
80. ms You must keep a copy of all forms on file at all times in case of computer failure 3 1 5 Filling the paper forms For local and national data quality control purposes all paper forms must be kept Patient Registration Forms and combined Patient Registration Biography Forms are one part yellow paper and should be kept somewhere secure Forms which are two part i e carbonised that is the Patient Biography Annual Review and Snapshot data forms should have the white top copy posted to the UK CF Data Centre in Dundee Otherwise keep the yellow copy in the notes and keep the white copy in a central file This will be aydited Every section on the forms indicated by a thick black vertical line to the left of the questions has been designed so that at least one item in the section should be ticked or completed Any question which asks for information which is not available because say a measurement has not yet been performed should have the value X recorded If a measurement has been performed but the results are not known at the time of completing the form completing Genotype 36 and 37 might pose this problem the value should be recorded If a measurement is not applicable because of the patients age for example the data entry box should have a score through it See Sec 7 for the default values on all forms You are required to send quarterly returns to the Dundee Data Centre via zip disk The corre
81. muhsin permission to enter browse and backup data select the user name fiona muhsin see Figure 5 25 Using the mouse click on the check boxes in the right hand side of the window labelled User may browse data User may enter patient data User may backup data When you have finished the screen should look similar to UK Cystic Fibrosis Database User Permissions Browser UK Cystic Fibrosis Database User Permissions Browser You must not alter data without good reason 1 Choose a user identifier 2 Set user parameters Click on one of the codes below using the left hand Chose the operations that the selected user may perform mouse button to select a user M User may browse patient data mijohnson User may enter patient data User may amend patient data User may transfer data User p data Add a new user User may administer users User may configure system Change user password Delete selected user Return to the main menu Figure 5 26 Sample user name fiona muhsin configured to be able to enter browse and backup user data Permissions come into effect immediately so be careful not to lock yourself out of your system if you change your settings The permissions you can configure are User may browse patient data Allows the user to look but not change any patient data entered in the system User may enter patient data Allows the user to enter new patient data bu
82. n this should be entered in the allele 1 box 4 1 2 14 Age at diagnosis of Cystic Fibrosis 40 41 Age years months The age at diagnosis of cystic fibrosis may sometimes be unknown please enter a in each box if this is the case For adult patients an age to the nearest year is good enough 4 1 2 15 Method of diagnosis of Cystic Fibrosis The purpose of the method of diagnosis section is try and establish the symptoms with which the patient presented as opposed to those which were subsequently found We appreciate that for adult patient this is frequently unknown and this should indicated by ticking box 42 43 44 Meconium ileus and or DIOS 45 46 47 48 49 50 51 52 53 54 55 Meconium ileus is defined as complete intestinal obstruction following birth associated with characteristic x ray picture and or perforation DIOS is defined as bowel obstruction secondary to accumulated matter within the terminal ileum caecum and colon Prolonged jaundice Prolonged jaundice is defined as jaundice being present beyond ten days of age Failure to thrive and or malnutrition Failure to thrive is defined as a failure to maintain an appropriate weight centile and or a reduction in muscle mass and or a reduction in body fat Steatorrhoea and or abnormal stools and or malabsorption Steatorrhoea is defined as the presence of fat globules within a microscopic sample of sputum or an increa
83. ne entry eee Please use the tollowing codes in the large boxes where necessary Unknown Not done X Not applicable Clinic Number Patient Number Wa tte BHBIC NISL UK Cystic Fibrosis Database Routine MIRRE lee i 2 Lh Date of last clinic visit 2 UK CF Database Department of Child Health University of Dundee Dundee DD1 9SY mui 01382 633919 FAX 01382 645783 E MAIL ukdatabase ct org Exercise Tolerance Score id 4m Sly 0 Able to do everything as well as 3 Has to stop when walking at Date of this clinic visit Clinician inlays others of the same age own pace on the level LIU ARI HM f10 Specialist 1 More breathless on hills and stairs 4 Breathless on the slightest ld Q Tim sly 19 O11 Non specialist than contemporaries activity e g washing dressing aani apieonlnainnn Alana laai alata siak Tiennth af atuiectaue inok 2 Can walk on the level at own pace 5 Breathless at rest Hospital admissions since last clinic visit Length of admissions days adm 2 adm 23 adms lags behind contemporaries tick sy ae Patient s name Patient s age nate iit x J TL LTELIIT LLL L E Specify 15 e L years For chest infection 16 17 18 For bowel obstruction 19 20 21 For haemoptysis 22 23 124 For haematemesis 25 2 Orn For pneumothorax Ace Ono For other reason Hehe Op specify EEE H Short term drugs since last clinic visit Length of course days SHORT
84. ne or more disks which are posted to the national data centre Internet Data is transferred via the Internet possibly via modem if that is how you are connected to the Internet Modem Data is transferred via a modem directly to the national data centre Your computer expert will have configured which option you will use see 6 7 Configuring the kystem Transferring data is very simple whichever method of data transfer has been selected On the main menu click on the button labelled Transfer data to central UK CF Database You will see a window similar to that in Figure 5 20 appears Patient reqistrati LACK Cate Eamon i About tp hiraf deta te Annial raven fi emi Snapshot dace fone E aten E a rd Cismim fiibtiliide fan fed sl E Fis Tobio Transfer data io central UE Cystic Fibensis D atabkesa EZ Liner ay Saree rn fal Fac hus l impar E Labele Logom of eyetem Ke Figure 5 20 The window asking for confirmation that the user wishes to initiate data transfer Patam biegeapk When you first receive the database the transfer button will place a transfer file copy of your database in your C V drive called ukcfdb97 transfer mdb However to transfer data via zip disk you will have to make certain changes to the Default data transfer file see5 7 Configuring the system Please refer to this section before going any further To transfer via zip disk ensure you have ins
85. never be used to enter data To add a new user log into the system see 5 1 as administrator giving the appropriate password or as a user with permission to administer users Click on the users button on the main menu Figure 5 21 You will then see the user permissions browser Click on the Add a new user button in the bottom left of this screen You will then be prompted to enter a user name for the user This name should be at least eight characters long and is case sensitive For example if we wanted to create an account for Fiona Muhsin we might choose the user name fiona muhsin Please type a username for the new user required Cancel User names should be at least 8 characters long fiona muhsin Figure 5 23 Entering a new user name Type the name in the box provided and press the OK button You will then be prompted to enter a password for the new user The password should be at least eight characters long contain at least one letter and one number and is case sensitive You will be asked to enter the password twice to ensure you did not mistype Please enter the new password Your password must contain at least 6 charcaters and be a mixture of letters and numbers hOr53jump1 ng Figure 5 24 Entering a password for a user Once you have entered the password twice you should see the new user name appear in the list of users in the top left of the user permissions browser
86. not to guess value for this missing item but to contact the clinician and ask for the missing value If this is not done the data will be meaningless when local and national analysis is performed Keyboard data entry is very efficient if you keep the following keystrokes in mind TAB or ENTER moves the focus cursor to the next field or button on a form SHIFT TAB holding down the SHIFT key and pressing the TAB button move the focus to the previous field or button on a form SPACE is the equivalent of single clicking the mouse when the focus is over check boxes or radio groups The LEFT CURSOR and RIGHT CURSOR keys move the focus between options in a radio group F4 causes the choices in a drop down list to be displayed Use the UP CURSOR and DOWN CURSOR keys to select the option you want and press TAB or ENTER to move to the next field or button 5 3 4 Data entry mainly using the mouse If you prefer to use the mouse to choose options there are a few tips which are worth knowing To tick individual tick boxes or options in radio groups position the mouse over the option you want to select and click the left hand mouse button once a single click If you are presented with an option which looks similar to clicking on the downward pointing arrow on the right of the main box will display a list of values Single click on a value in the drop down list will insert that value into the field box Genotype 24 Not done 25 Pa
87. ns the sex of the patient when they were born 5 3 1 3 Text boxes ante LE EL EEL EEL EE TE h Figure 5 12 A text box This is box or group of boxes which are used to record numbers or free text They are represented on the paper forms by the symbol shown in Figure 5 12 5 3 1 4 Check boxes Multiple choice a Features at b Features at referral diagnosis Unknown O 30 O 31 Meconium ileus and or DIOS Clis2 Clis3 Prolonged jaundice Qes Lgs Figure 5 13 A group of check boxes Note the decline option at the top of each list if the features at referral or features at diagnosis are unknown one can tick the top box in each column and skip to the next section Individual or groups of tick boxes where one or more can be ticked to indicate a selection If a long list of check boxes is present then the first box in the list will be a decline box see Figure 5 13 5 3 1 5 Radio group single choice Sex at birth Cla Male Cno Female Ln Unknown or other Figure 5 14 A radio group Only one of the options shown is valid Radio groups named after the buttons on car radios are groups of tick boxes of which only one may be chosen See Figure 5 14 for an example 5 3 2 Filling in the forms There are some general rules that should be followed when completing either paper or electronic versions of the United Kingdom Cystic Fibrosis Database forms e Ensure that each and every page has the UK CF Patient
88. nsfer data to central UK CF Database Transfer data to central UK CF Database Figure 5 8 The Transfer data to central UK CF Database icon This icon allows you to initiate a data transfer via zip disk depending on the configuration set as described in 15 7 Configuring the system you must refer to this section Please use this to send your data to the Dundee Data Centre quarterly along with the corresponding paper forms 5 2 7 System buttons E ser z oystem l Backup A Import Figure 5 9 Left to right The users icon Allows qualified users to configure user accounts see 5 6 Administering users the system icon Allows qualified users to configure the software see 5 7 Configuring the system Backup Allows qualified users to backup data see Backing up the System Import icon Allows qualified users to import information into the database see 5 9 Importing Information 5 2 8 Printing Additional Patient Registration Labels Labels Figure 5 10 The Printing labels icon Clicking on the print label icon will allow you to print an A4 sheet of patient labels These labels should be attached to the patient registration and biography annual review or snapshot data routine clinic visit forms The patient s registration and biography details must first be entered into the system before this option can be selected The labels are an industry standard format see sec 1 Preface Not
89. o hospital since lasr clinic visit Length of admissions days Admissions agm aym 23 ads jo eee i tekh E ARE SERN i Fy Aua or elective invesdeaton tr La 4 Spas i SELEPAS IDEE i inhaled or nebulised beta agonist Geca Oir Cra 3 ift vai Ein Inhaled or nebulised anti choiinergic Oan Oea Cis For chest infection Len ig aa oe 2 Nebulised andbiode Colomycin Cea Oen Cae For dowel obstruction 1 3 J j c Gentamicin Cen Chast Oya For hae moptysis Lt 24 z rT rT x Tobramycin Ooo or Aen For haematemesis Lis 27 a Other Cin Eiai Chen For pneumothorax 3 Oral anabiotic Chea Oo Owe Foc other reason Inhaled steroid Chr Otw isor 5 Orad sterord Every day Chie Zos Crw Short term drugs since last clinic visit Altemate days Gros Cro Oran 6 DNase Cro Cowi iral Length uf course days SHORT TERM ANTIBIOTICS NW Ont co 30 E 7 NSAID For arthropathy Ome Oax Onin i tea i j i inet E py Fond po 10 l Auz Lung anti inflammatory dose Onu Greist Cii i aa os i bo ro DE le i sar Proton pump inhibitor Ona Oena Gaz TH i i i e ALL OTHER SHORT TERM DRUGS i 9 N acetylcysteine es Otc Ona Lactulose des Dosi Drs al Gastrograffin Onse io Cisi Most recent laboratory and social data since last clinic visit PEF Davs off work school 0 URSO deoxycholic acid Ong Ons Jer Height FEY xT le H 7 Fg s f 9 pa Xi i e
90. o that if any queries arise they can be addressed to the appropriate person 3 Your initials Please enter two initials of your choosing preferably the first letter of your given name and your family name which will allow the person who completed the form to be identified if there are any queries 4 Today s date day This should contain a number representing the day of the month the form was completed For example 01 if the form was completed on the 1 September 5 Today s date month This should contain a number representing the month the form was completed as below 01l gt January 04 gt April 07 gt July 10 October 02 gt February 05 gt May 08 gt August 11 November 03 gt March 06 gt June 09 gt September 12 gt December 6 Today s date year This should contain a number representing the year The year should be written as four digits e g 1996 not as two e g 96 4 1 2 10 Date of birth This section collects information describing the date of birth of the patient for demographics We have deliberately omitted the day of birth in order to ensure patient confidentiality 7 Month of birth A number representing the month the patient was born see question 5 for number 4 relationships If the month of birth is unknown the value should be recorded 8 Year of birth A number representing the year the patient was born The year should be written as four digits e
91. o the next section for further details When you have finished using the data entry software click on the open door icon labelled Quit 5 2 The main menu Once you have entered a valid user name and password you will see the main menu shown below WF Late oho imahna Mian Menu Patient reqisiratiom fore New BI Record Death Patient big ragehy Hit Mew Browaniamcnd Feud revii fari H Hew El Brows dla enied Smepshot Asta form f Hew Ej Erse amend Ceili Pitari a Had ID zj Fix Tabia Transtar data t cemiral UK Cystic Fibrosis Database CEMT k Laii ip ral gi ll Backus amp l Impar l Latak Log oan of systemic ng Figure 5 3 The Data Entry Software main menu You may not necessarily be able to select all options Options you are permitted to select will contain colour in the icons pictures on the buttons used to access the option See sections 2 2 3 Completing the Installation and 5 6 Administering Users for setting up the user permissions The buttons have the following functions 5 2 1 New patient number record death Patient registration form Blew Record Death Figure 5 4 a The New patient number and Record Death icons Patient Registration Form Before you can enter any data describing a patient you must register that patient Click on the left hand light blue button to enter the details that will allow an internationally recognised patient identification number be calculated
92. onchiectasis OS Extensive changes with pulmonary obstructive pneumonia and infection Lobar atelectasis and bronchiectasis Chest X ray score 120 25 Guide 1o severity of Cystic Fibrosis indicated by Shwachman score Severe 0 40 Moderate 41 35 Mild 56 70 Good 71 85 Excellent 86 100 Total Shwachman score 140 100 Fat soluble vitamin plasma values at review Om Not measured Ons Measured Males Females Patient s voice has broken Patient has had first period gt hen Yes gt hey No Marital status at review Orus Single child or never married Os Living together Dun Married Oras Separated Des Divorced Duso Widowed Ons Unknown Employment school status at review Children Dusz Pre school Diss At school Adults Orsa Higher education Duss Unemployed Ouse Full time work gt 37 hours per week Ols7 Part time work Onse Full time homemaker Dusa Unknown Domicile at review First half of postcode 180 or town as specified below if postcode unknown tien Genotype at review Ouez Not done Opes Patient refused to be genotyped Please enter genotype exactly as reported by molecular biology laboratory Allele 11 fea Allele 2 tres COMPLETE A SNAPSHOT FORM Oiso a have Thank you for compl iim Plea
93. or Shift TAB to move between fields Figure 3 6 The patient registration number displayed after clicking on the Finish picture icon Upon clicking the OK button the dialogue box below is displayed prompting you to print a sheet of A4 labels See secl Preface Note on label specification for label size to be ordered Upon clicking the yes button the labels are printed These labels should be added to the patient s notes and can be attached to forms as and when required UK Cystic Fibrosis Database Patient Registration 2 of 2 UK Cystic Fibrosis Database 44F PEF 199732 r aneni Registration 1 of 1 Please use the following codes in the large boxes where necessari Unknown 7 Motdone x Not applicable Labels Would you like to print a sheet of patient identification labels for this patients notes E Female f M 16 Singleton birth 7 Unknown or other Order in birth if multiple birth 17 Family name Country of birth f 8 Legal family name at birth is recorded i United Kingdom jia 5 Legal family name at time of diagnosis is recorded Town of birth co o 0 Other family name is recorded Town of birth Family name TOHNEUN BRISTOL 19 ll Enter values pressing Enter at the end of each mj 11 tem Use TAB or Shift TAB to move between fields Finish Figure 3 7 The message displayed prompting you to print patient labels for adding to patient notes Clare will now be prompted to complete a
94. ot applicable UK Cystic Fibrosis Database Patient Biography 1 of 1 Ty ihe date antry software tera d availabe 2l Part ng 44R P9F 1997 2 Clinician details Genotype ea Not d Your initials i I ia Clas Not done HE 2 T JE Msn Patient refused to be genotyped Today s date Ga day 5 month Lz 6 lyear Please enter genotype exactly as reported by molecular The day of binis deliberately not requested j jo ihis section Allele 2 tasi Monik ot birh E Age at diagnosis of Cystic Fibrosis E Ek gt 7 a Year of birth RER Age at diagnosis Ee years s1 months Sex at birth Method of diagnosis of o nee Osi Male ersten att a apple o K n lt thein intial features idi atve of OF hat cas Pallant to 10 Female De E E qand eee Ast Rae r si refered to ii ee aye ae hos No sat Cien Unknown or other a faatu dicative rat ved bythe spec special on comp spec nostic examination 2 SLT AS Ethnicity Ouz Unknown Please dick the one description which thes r potent feels Best Ube usede Cua Meconium ileus needing surgery describes steric Thie informatic pr awry 5 genotype phenotype studiase 3S Cle Meconium ileus Managed medically Father Mother Clas Prolonged jaundice 4 Cus Failure to thrive and or malnumition Oa Os White Cuz Steatorrhoea and or abnormal stools_arid or Oos Oost Black African malabsorption C csi Fia Black Ca
95. ppear in 2 Choose a clinic visit If you want to browse view the contents without being able to modify a record click on the light blue Browse a clinic visit form You will then see a form which looks the same as the data entry form but which will not allow you to modify the contents of the record If you want to amend a form click on the pink button labelled Amend a clinic visit form Once again you will be presented with a data entry form but this one will allow you to alter the data on the form Use this option with great caution If you need to amend records frequently you are doing something wrong please contact technical support if you need help 5 5 Transferring data to the national centre Having entered all your data you should transfer it to the Dundee Data Centre quarterly along with the corresponding paper forms B Transferring data to the national centre should not be confused with backing up the system There is currently only one type of data transfer possible Zip disk Internet or modem are not implemented as yet ee kd Paper Data Collection System Interactive Query Tool py py Internet Modem Floppy disk Data Entry Clerk Dundee Internet Modem Clinical Database Systems U K C F Clinical Database Figure 5 19 Electronic data transfer options left hand side of diagram Zip disk Data is transferred on o
96. r radio buttons Aspergillus C oe C Fa pressing Enter at the end of each item SHIFT TAB and Candida C ray so TAB move you backward and forward between fields Other organism as specified C a O a2 ancel Back Next Figure 3 21 Completing the fourth annual review data entry screen transcribed from page one of the annual review form Use either the mouse or the keyboard to enter data See UK Cystic Fibrosis Database Annual Review 2a of 3 E UK Cystic Fibrosis Database 44P ARF 199732 Annual Review 2a of 3 Patient Code QO4G M648 6HHC 1 G51 L 1 Clinic Code P171F 2 Supplemental feeding in last period Evidence of fertility in the last period Tick all supplemental feeding administered in the last period Complete for both patient and partner Please indicate the M 84 Received no supplemental feeding in last period number of each type of indicative event not offspring O 85 Oral supplements I 91 Child AND OR no evidence of fertility detected E 86 N asogasztric E 92 Self or partner i currently pregnant C 87 Gastrostomy ona T 28 Parenteral Humber of spontaneous abortions i D 89 Other supplemental feeding as specified below Number of induced abortions 4 70 Number of preterm births 95 TAB Next field Number of full term births t Jes SHIFT TAE Previous field eE PACE Select iter Number of still births a7 CURSOR KEYS Choose tem O 98 Other eviden
97. r at tie top of avery sheet Seecity 1741 SI UK CF Database Dapanment of Chid Hearth University of Dundee Ouades DOT SY W 01362 833919 Fax orag 545783 E MAIL ukdalabase ctorg Please use the following in the large boxes if necessary Unknown Not done Patient Number HETE Ll PESAR Stax ihe pajer identificadion us ganarai et Clinic Number EAE dy che data amry software here f available 2 Part o 4A AAF 1997 2 Wilte all leners in BLOCK CAPITALS within the boxes Nebulised ues in last E natae C i ee T Ee T T aaa SRN Os S oa ETE A ET A Sean ie adeaben X Not ap UK Cystic Fibrosis Database Annual Review 1 of 3 Write the patient and clinic number at the top of each page ae an Received no nebulised antibiotics in last period Clinician details Your initials m HEMA Hea Today S Pei 4 tay 4 5 fmancs Gi cyear Date of Review Cesa Colistin Ons Gentamicin Cuo Tobramycin Clia Received the following other nebulised antibiotics GG ch conte in month s iepa 4 ae paient im ihe last period gan BL NAO ees pian a p KE evious UK secon Revers have been dotie thea the sperod mith va suice the Jast anntial review Meee Ab ae Pre infecuen Post intectian Ines as the previous 12 months i J n A z Prophylacacally Connnuously Latermictendy Complications oe the last Panpa e c
98. r for the patient using one of the following methods a Use the Microsoft Access based data entry software see 5 3 Entering data or b Telephone user support who will be more than happy to calculate a number for you 3 Produce patient identifier labels when prompted and attach to registration form 4 Attach patient identifier label to biography form 5 Complete the patient biography form 1 of 1 Keep your copy of the patient registration form in a safe place as it is your record of which patients have been allocated which patient number 4 1 2 Guide to the sections and questions Patient Registration Form 4 1 2 1 UK CF Patient Number and UK CF Clinic Code Initially the UK CF Patient Number will be blank However once a patient has been registered and allocated a number sticky labels should be printed for them These contain his UK CF Patient Number and Clinic Code One label should be stuck here 1 UK CF Patient Number This question appears at the top of all UK CF Database forms and refers to the unique identification number which will be allocated to a patient when you have completed the Patient Registration form 2 UK CF Clinic This question appears on all UK CF Database forms and refers to the unique identification number which your clinic was allocated when you initially registered with the UK CF Database All correspondence between yourself and us has this number If you are unable to find it please cal
99. r has been detected 34 Had IV port replaced There have been reported instances of emboli from the end of an IV port and many ports are having to be replaced because they are blocked Some instances of contraceptive pill induced block have been reported 35 36 Developed the following other complications Give brief description of complication if not covered by the previously mentioned 4 2 2 3 Nebulised antibiotics in last period Many patients are switched between antibiotics and we are interested to find out which patients stay on one medication and which patients move between nebulised antibiotics 4 2 2 4 Oral antibiotics in last period These antibiotics are used in a number of ways With recent data suggesting that prophylactic anti staphylococcal treatment from a young age may be associated with a better outcome with respect to lung disease e Tick the prophylactic box if the antibiotic was started before the isolation of the organism in question e If the antibiotic was given after the development of chronic infection tick the continuous box e The intermittent box is self explanatory In this way we hope to find out how many patients at the first isolation of the organism are immediately put on the antibiotic in question 4 2 2 5 Intravenous IV antibiotics in last period We are trying to understand the spread of costs between home IV s and hospital IV s We are also interested to find out the administration ro
100. ram to open this type of file 7 If Msaccess is not an option click Other for the Open With box and find msaccess exe probably in path C Program Files Access msaccess exe and click Open Remember to check the MI Always use this program to open this type of file 8 Now try your old Access 95 databases and they should be OK as should the UK CF Database Sd eee a NB If you ever uninstall the UKCF Database you will again need to use this Open With box and repeat steps 1 8
101. rd should be written as one long word with no punctuation e g Hibbet Smith should be written HIBBETSMITH If the legal family name at birth is unknown then the legal family name at the time of diagnosis of Cystic Fibrosis should be recorded e If legal family name at birth or diagnosis of Cystic Fibrosis is unknown then the surname at the time of filling this form in shouldbe used Note that it is Important that every effort is made to obtain the legal name at birth to prevent multiple registrations in the database and to allow us to track patients who change clinics is Legal family name at birth is recorded Ce Legal family name at time of diagnosis is recorded Otto Other family name is recorded Family name D First initial Please supply below the FIRST LETTER OF THE GIVEN NAME AT BIRTH of the individual e g if named Claire Jane Katherine Johnson the letter C should be recorded As for the family name if the given name at birth is unknown then the name at time of diagnosis of Cystic Fibrosis should be used or as a last resort the first initial at the time of completing this form should be used Yoa Legal first initial at birth is recorded Ova Legal first initial at time of diagnosis is recorded Os4 Other legal first initial is recorded vata First initial Order in birth whether the patient was born as a singleton or 15 as one gf a multiple birth twins triplets etc va
102. re breathless on hills and stairs 4 Breathless on the slightest activity Name of drug 144 than contemporaries e g washing dressing Capsules per day When Taken Before During After meals Unknown 2 Can walk on the level at own pace 5 Breathless at rest meals meals lags behind contemporaries Ous Onn Onas Oia 145 Mos recent bacteriology culture result since last clinic visit ies No bacteriology performed since last clinic visit PITTI LILLIE LLL Name of drug 150 MDate of culture Capsules per day When Taken Before Dunng Attermeals Unknown tick all that apply_ meals meals 65 d 66pm 67 T Onus Onsa Ons Diss ji E Oiss Normal flora Ojos Pseudomonas aeruginosa O70 Burkholderia cepaciae Orn Unknown result O72 Haemophilus influenzae O 73 Staphylococcus aureus Orna MRSA Ors Other Specify ALL other bacteria rip University of Dundee Dundes DD gsY 01382633919 FAX 01382 645783 E MAIL ukdatabase ct org Specify Figure 3 16 The UK CF database snapshot data form completed for the sample patient described in 3 2 1 e Spot the deliberate errors in this form compared to the history e Also note that Exercise Tolerance Score and Days off work school are reversed on the corresponding data entry screen The Routine Clinic Visit form completed for our sample patient can be seen below Note that as for the patient registration form and annual review forms every section has at least o
103. ressing Enter at the end of each item SHIFT TAB and TAB move you backward and forward NB EVERY FIELD MUST HAVE AN between fields ENTRY Back Mest Figure 3 20 Completing the third annual review data entry screen transcribed from page one of the annual review form UK Cystic Fibrosis Database Annual Review 1d of 3 E UK Cystic Fibrosis Database 44F ARF 19972 Annual Review 1d of 3 Please use the following codes inthe large boxes where necessarn Unknown Mot done Mot applicable Patient Code Q04G M648 6HHC Y G51 L 1 Clinic Code P171F Ha Intravenous antibiotics in last period Organisms cultured in the last period i f 57 Patient does not have an I port Please tick all organism cultured in the last period and 58 Patient has an W port indicate where the samples were taken from Tick all intravenous antibiotics administered in the last period T 64 No cultures were performed in last period M 59 Received no intravenous antibiotics in last period Sputum culture Cough swab Humber of courses Total number of days Mormal flora O 65 O B6 Home I s 60 61 Staphylococcus aureus Iv E7 O E8 Hospital s 62 63 Haempohilus influenzae O 69 O 70 Pseudomonas aeruginosa O 71 O re eection 4 of the user manual for further details If using the Other pseudomonas species m Fa m 4 keyboard type data in the fields press SPACE to select Burkholderia Cepaciae C ps E pe checkboxes arrow keys then SPACE fo
104. ribbean lias Rectal prolapse Gons Ona Black Other Cus Sinus disease and or nasal polyps Oea Oer Indian Crisa Lower respiratory infection Oiza Oza Pakistani Cis Family history Ora Ogs Bangladeshi Otsa Screening O ize Oien Chinese Osa Electrolyte imbalance Oea Ogg Asian Other Oia Infertility Oiso Cor Other Cissi Other Specify other reasons Og Cio Individual preferred not to say CI iy Oas Clinician preferred not to ask question Thank you for completing this form Please check that you have entered your UK CF Clinic Code and the patient s UK CF Database Number at the top of every sheet TA UK CF Dambase Deparment of Chid Health Universdy of Oundes Oundes oot gs W 01382 GAIG19 FAX O1982 643793 EMAIL ykdatabass Oct org ONLY THE WHITE TOP PAGE SHOULD BE SENT TO THE UK CF DATABASE Unknown Not done X Not applicable Patient Number TT YT T i UK Cystic Fibrosis Database Ty Stick Ihe ganan Kentficaton label generaled by Snapshot Data 1 of 1 Clinic Number Cae Date of last clinic visit l uus Te HEI Date of this clinic visit Clinician initials PoR Dp ge n au adli l irmis ja Lil Joi Atti Non specialist Status of long term administered therapies Cir Patient has not received long term administer therapies Drug received at same nme since the fast clinic visit Yes No jiri Hospital admissions since last clinic visit Cuza Patient has not been admitted t
105. s 5 2 9 Log out of system 5 3 Entering data 5 3 1 Conventions 5 3 2 Filling in the forms 5 3 3 Data entry mainly using the keyboard Preferred 5 3 4 Data entry mainly using the mouse 5 4 Browsing and amending data 5 5 Transferring data to the national centre 5 6 Administering users 5 6 1 Adding a new user account 5 6 2 Setting user account permissions 5 6 3 Changing a user account password 5 6 4 Deleting a user account 5 7 Configuring the system 5 7 1 Data transfer 5 7 2 Default backup file 5 7 3 Importing data 5 7 4 Repairing a system 5 8 Backing up the system 5 9 Importing information 5 10 Browsing and deleting database tables 5 11 What to do if the system reports an error 6 CASE STUDIES 7 DATA ENTRY DEFAULT VALUES ON ALL FORMS APPENDIX Appendix 1 IMPORTANT Please read before using the data entry software All fields must be completed 23 Text entry boxes e g U must contain text or one of the following entries Indicates Unknown X Indicates Not done Indicates Not applicable automatic default in some cases SEE SECTION 7 DEFAULT VALUES ON FORMS REMEMBER YOUR PASSWORD Keep a copy in a safe accessible place If at anytime the system fails to respond press the escape key top left hand corner of the keyboard you will NOT do any damage to the database 1 Preface The software has been designed to collect information as quickly and accurately as possible You may fin
106. s are complete and correct The next step is to enter the data from the three pages of the annual review form into the electronic data entry system From the main menu screen the New Annual review form is selected The data entry screens should be completed as in the following figures For clinical description of each of the data items you should refer to section 4 Guide to completing questions UK Cystic Fibrosis Database Annual Review 1a of 3 UK Cystic Fibrosis Database gap apr 9973 Annual Review 1a of 3 Please use the following codes in the large boxes where necessan Unknown Motdone Not applicable Patient Code O04G M648 6HHC G51 L 1 Clinic Code P171F 2 Clinician Details HB EYERY FIELD MUST HAYE AN ENTRY y EM Use either the mouse or the keyboard to enter data i our initials 5 See section 4 of the user manual for further details 19 Hda 02 5 th 19937 E Jodas daie s Jr Kay oe It cm ss ji Kyear IF uzing the keyboard type data in the fields press SPACE to select checkboxes arrow keys then Date of Review SPACE for radio buttons pressing Enter at the end goaia 02 Ekmon 1997 Pye of each item SHIFT TAB and TAB move you backward and forward between felda The following questions refer to the status of the patient in the last period If previous UE CF Annual Reviews have been done then the last period is the interval since the last annual review o
107. s have an annual glucose tolerance test beyond adolescence We are trying to monitor both the prevalence of GTTs and the frequency of abnormal glucose tolerance tests in the whole population 4 2 2 12 Transplant status in last period Here we are trying not only assess how many have received transplants but how many never reach a transplant centre 120 Refused Should include those who refuse the offer of transplant assessment or referral 4 2 2 13 Clinical trials in last period 127 Patient is not taking part in any clinical trial This is self explanatory 128 Patient is taking part in the clinical trial s below This is self explanatory 4 2 2 14 Treatment compliance in last period We are trying to assess whether non adherence treatment has a major impact on the outcome for groups of individuals 4 2 2 15 Most recent Chest X Ray in last period Northern score is simpler than other scores if the clinician wishes the individual quadrant scores may be written on the form and the final score entered into box 137 out of a maximum of 20 If some centres do a Chrispen Norman score this should be included only if done in that particular centre The next sections refer to what we call snap shot data This is purely an assessment of the current status of the patient 4 2 2 16 Annual Review of 3 4 2 2 17 Schwachman score at review Clinicians should circle the relevant section value under General activity Physical exam
108. s listed Cancel 22 GI reflux requiring treatment z 23 Colonic stricture O 24 Barium enema looking for colanapath 36 Back j Mert Figure 3 19 Completing the second annual review data entry screen transcribed from page one of the annual review form UK Cystic Fibrosis Database Annual Review 1c of 3 Ea UK Cystic Fibrosis Database gap apri9973 Annual Review 1c of 3 Please use the following codes in the large boxes where necessarcUnknown Mot done Mot applicable Patient Code Q04G MB48 6BHHC G51 L 1 Clinic Code P1F1F E 2 Nebulised antibiotics in last period Oral antibiotics in last period Tick all nebulised antibiotics administered in the last period Tick all oral antibiotics administered inthe last period 37 Received no nebulised antibiotics in last period al 43 Received no oral antibiotics in last period Pre infection Post infection a O 39 Gentamicin Prophylactically Continuously Intenmittenthy M 40 Tobramycin M H Received the following other nebulised antibiotics Sere E 44 O us C 146 Anti pseudomonal O 47 O 49 O 45 2 a aa 42 Received the following f other oral antibiotics in Use either the mouse or the keyboard to enter data See the last peri d C 53 O 4 Ops section 4 of the user manual for further details If using the keyboard type data in the fields press SPACE Fo 56 x to select checkboxes arrow keys then SPACE for radio 56 Cancel Buttons p
109. s of fertility or diabetes although a glucose tolerance test has not been performed to confirm this In the four clinic visits since his last annual review he has not missed any of his full time work MJJ currently receives 30 Creon capsules a day A transplant is not appropriate and he has not been referred for one Clinical nurse specialist RM recorded MJJs height as 180 25cm his weight as 74 22kg FVC and FEV of 2 07 and d1 45 litres respectively He is slightly more breathless on stairs than others of his age He was X rayed at his last clinic visit when he was recorded as having a Northern score of fourteen At review MJJ is receiving inhaled beta agonists inhaled steroids 1 2ml of Abidec liquid 250mg of Vitamin E once a day and DNase as part of a Scottish trial He is about average at complying with his prescribed treatment regime He is AF508 homozygous For the purposes of this demonstration assume that Clare de Winton will be entering the forms into the data entry system Try entering this history for practice The history contains a number of deliberate errors See if you can spot them when you get to the forms 3 2 2 Completing the paper forms no computer ary Unknown Not done X Not aj UK Cystic Fibrosis Database Annual Review 1 of 3 Please use the following in the large boxes if neces Patient Number i icine pulone Maesteg Clinic Nu
110. s where necessarcUnknown Mot done Mot applicable QO4G Mb40 6HHC GS1 L 1 Clinic Code P171F E 2 Status of long term administered therapies Drug received since last clinic wade Yes Mo 7 12 Pancreatic enzymes Name of drug Creo Fina Cap Time taken Before During After Unknown per day meals meals meals c7 e0 Jonaz D maa O p44 O p45 M 146 Mame of drug 147 Cap Tume taken Before During After Unknown per day meals meals meals CP E Jus C pag ps0 O n51 O n52 T NSAIL For arthropathy Anti inflammatary 5 H2 antagonist Proton pump inhibitor oig 9 N acetylcysteine Lactulose Gastragraftin 10 URSO deoxycholic acid Taurine TAB Next field 441 Inulin SHIFT TAB Previous field f SPACE Select item 1 Oral hypoglycaemic f NB EVERY FIELD MUST HAYE AN ENTRY CURSOR KEYS Choose item 253 03 9890 489 0g 253 03 O80 489 345 9 Figure 3 31 Completing the fourth snapshot data routine clinic visit data entry screen UK Cystic Fibrosis Database Routine Clinic isit 1d of 1 UK Cystic Fibrosis Database gap pcy AR 1995 Routine Clinic Visit 1d of 1 use the following codes in the large box where necessam Unknown Mot done Mot applic able Patient Code Q04G M648 6SHHC 1 G SMAELE HEE status of long term admin Record saved in database Drug receved sine last clinic visit T NSAI For arthropathy EN i Unknown Anti inflammatory hn Before During After
111. s31 For chest infection 17 18 BE aa Omi 2 Nebulised antibiotic Colomycin Osa Oss Cisa ion 20 21 7 For bowel obstruction BE T PEE On Ows Oies e 25 For ee a T Tobramycin O Om O92 D j28 For haematemesis The 271 Other Os Ow Ois For pneumothorax EES ggn Opn 3 Oral antibiotic Ow Opn Cios For other reason 32 33 4 Inhaled steroid Om Ono Oro ay ITITI E oe era Cher o Ch Shot term drugs since last clinic visit Alternate days Quos Orno Cuon Wiss Patient has not received short term drugs since last clinic visit 6 DNase Cuo Ono Onno Length of course days SHORT TERM ANTIBIOTICS IV Oral co co 2360 7 NSAID For arthropathy Onin Omz Orn tick tick ITITI penton LLULL Ouz Lung anti inflammatory dose Oma Oms Ors TTT T poaa a n ffe raaes Dun On Bh TT T howo a CE o0 f Poon pump ini Om Oen Ora ALL OTHER SHORT TERM DRUGS TEITT 9 N acetylcysteine Onz Onz Ons PTET ET TTT TT TET ET ET Ee Bo Se 55 Gastrograffin Ois Oa Diii t and ia since last clinic visit noot seat Days off work school 10 URSO deoxycholic acid Ona Ohs3y Or 0 9 ogee amis tenoa Tee en Oo ar litres 2 5 min days Wei vA saturation Exercise Tolerance Score 11 Insulin Ows Ona miey Tar fa BE aE litres Oral hypoglycaemic Ona Ous Orna Exercise Tolerance Score 0 Able to do everything as well as others 3 Has to stop when walking at own pace 12 Pancreatic enzymes ooo cee TOT 1 Mo
112. scular 11 15 Mildem 6 10 Modegite emphysema Widespread areas of atelectasis with posed areas of infection Minimal bronchiectasis ive changes with pulmonary obstructive pneumonia nfection Lobar atelectasis and bronchiectasis 139 25 0 5 Exte Ghest X ray score rity of Cystic Fibrosis indicated by Shwachman score Severe 0 40 Moderate 41 55 Mild 56 70 Good 71 85 Excellent 86 100 aie 100 Total Shwachman score Figure 3 15 Page three of the UK CF database annual review form completed for the sample patient described in 3 1 2 identification label generated by the data entry software here if available Part no 44R ARF 1997 2 af Respiratory rate slightly UK Cystic Fibrosis Database Annual Review 3 of 3 H Fat soluble vitamin plasma values at review 141 Not measured C142 Measured Pubertal status at review Males Females Patient s voice has broke Patient has had first period gt A Yes gt Ois No Marital status at review Oj146 Living together 147 Married C148 Separated O49 Divorced C150 Widowed O151 Unknown Employment school status at review Children C152 Pre school C153 At school Adults C154 Higher education Oiss Unemployed Frise Full time work gt 37 hours per week C157 Part time work C158 Full time homemaker Oj159 Unknown Domicile at review N First half of postcode AD g 160 or town as specified below if postco
113. sed faecal fat output if quantitated Rectal prolapse Self explanatory Sinus disease and or nasal polyps Sinus disease is defined as an opaque sinus on x ray Lower respiratory infection Lower respiratory infection is defined as evidence of an increased respiratory rate cough and a chest x ray appearance showing consolidation either lobar or patchy consolidation Family history Family history either a genotype or sweat test confirmed diagnosis of CF within a relative who has a direct blood link with the patient Screening This can be antenatal neonatal or opportunistic Electrolyte imbalance Includes excessive dehydration due to loss of salt in the sweat or urine and includes CF Renal Electrolyte Syndrome Infertility Here we are looking at the congenital bilateral absence of the vas deferens syndrome Other Specify other reasons Any other reason not listed in fields 42 54 4 2 The Annual Review Form This form is divided into two different parts e The first is a historical collection of complications etc which have occurred since the previous form was completed Formlof 3 2of 3 e The second provides a description of the status of the patient at the time of the review Form 3 of 3 1 Time If this is the first time the patient is completing the form then the complications occurring in the last year should be recorded All other times Otherwise the complications occurring since the last annual review
114. short walk Rests a good deal Poor school attendance Confined to bed or chair Orthopnoeic AY 25 Physical examination 21 25 Normal No cough Clear lungs No deformity Respiratory rate normal Resting respiratory rate normai Rare coughing Minimal emphysema Clear lungs Occasional cough Mild emphysema Respiratory rate slightly elevated Rarely localised crepitations Early clubbing Frequent cough usually productive Moderate emphysema May have chest deformity Chest retraction Crepitations present Moderate clubbing Severe coughing spells Tachypnoea with tachycardia Extensive puimonary changes May have signs of right heart failure Marked clubbing 137 25 Height and weight above 25 centile Weil formed stools Height and weight at 15 20 centile Stools slightly abnormal Height and weight abies 3 centile Abnormal stools Poor muscie tone with reduced muscle mass Height and weight below 3 centile Abnormal stools Abdominal distension Flabby muscles Marked malnutrition Protuberant abdomen Rectal prolapse Chest X ray Large foul frequent fatty stools Ke 25 21 25 Clear lung fields 6 20 Early emphysema Minimal accentuation of bronchovascular markings Mild empysema with patchy atelectasis Increased bronchovascular markings Moderate emphysema Widespread areas of atelectasis with superimposed areas of infection Minimal bronchiectasis Extensive changes with pulmonary obstructive pneumoni
115. si Nate of dey fisar Date of culture _ Capsules per day When Taken Before Dunng After meals Unknown nck all that apply ineals meals U fesul Llen kon ene nes ete Ooa Ons Oos Oos Ojos Normal flora Ois Pseudomonas aeruginosa Cim Burkholderia cepaciae l su Oru Unknown result Om Haemophilus influenzae Oj Staphylococcus aureus ina MRSA Thank you for completing this form Please check that you have Drs Other Specify ALL other bacteria entered your UK CF Clinic Code and the patient s UK CF f j Database Number at the top of every sheet Specify L pi 3 UK CF Database Department of Child Health University of Dundee Dundee DD1 9SY 01382 639919 FAX 01482 645783 E MAIL ukdatabase cl org Figure 3 11 The UK version of the snapshot data routine clinic visits form UK Cystic Fibrosis Database Routine Clinic Visit 1 of 1 Patient Number Clinic Number LI Date of last clinic visit 3 UK CF Database Department of Chiki Health University of Dundee Dundee DO1 9S 01382 633919 FAX 01382 645783 E MAIL ukdalabase cf org Exercise Tolerance Score pid 4m sy 0 Able to do everything as well as 3 Has to stop when walking at Date of this cl
116. sponding white top copies of the forms entered during that quarter are also required for data verification purposes see 5 5 Transferring data to the National Centre 3 2 Annual Review There now follows a demonstration of completing the annual review form for a patient The forms for an annual review consists of three parts for collecting information since the last annual review usually the proceeding twelve months and a Snap shot form The Snap shot form is used to collect snapshot data That is data describing the health and treatment protocol of the patient at the time of the annual review 3 2 1 Summarised patient history The fictitious patient below will be used to demonstrate the system 24 year old single male patient MJJ UK CF patient number QQ4G M648 6HHC YG51 L last seen on 1 March 1996 was seen by the cystic fibrosis specialist AM for annual review at the clinic P171F on the 19 June 1996 MJJ lives in Dundee at postcode DD1 9SY and attends no other centre for CF related care MJJ last had an annual review in mid 1995 and has had no complications since then During that period he received nebulised Colistin prophylactically and occasionally oral Augmentin He was last on IV s in January 1995 also the last time he was hospitalised A sputum culture taken at the last clinic proved to have nothing but normal flora although a culture last winter showed signs of staphylococcus MJJ showed no sign
117. t not to browse or amend existing patient data User may amend patient data Allows the user to alter any existing patient data but not to browse or enter new patient details User may transfer data Allows the user to export all patient data to the national Cystic Fibrosis data centre User may backup data Allows the user to backup the entire contents of the data entry software database including user permissions to zip disk This is used to protect data from system crashes and for upgrading the data entry software You should backup at least once a week User may administer users Allows the user to perform all the operations specified in section 5 6 User may configure system Allows the user to perform all the operations specified in section 5 7 To change the permissions for another user just select that user name and choose the permissions as described When you have finished click on the open door icon at the bottom right of the screen to return to the main menu 5 6 3 Changing a user account password To change a user account password log into the system see 5 1 as administrator giving the appropriate password or as a user with permission to administer users Click on the Administer users button on the main menu Figure 5 21 You will then see the user permission browser Use the mouse to select the user whose password you want to change in the Choose a user identifier window in
118. talling the UKCF Database will change some associations in the system MDW File so that these Databases will try to run with Access 97 As you do not necessarily want to do this please contact Technical Support now prior to installing your UKCF Database For further information see Appendix 1 2 2 1a Set up of the UK CF Database Insert the CD ROM into the CD ROM drive on your computer To find out which drive letter represents your CD drive go to the Windows desk top you see the Windows desk top when you first switch on your computer Next double click on My Computer You will see a picture of a CD ROM with the drive letter beneath it Th Re bic ed da CO vai Ceh Computer Bis a a E i P PeH Crt Fare ath HT T h L si Mi chee oy Fig 2 2a Double click My Computer showing CD ROM with drive letter beneath in this case E Click the Start button at the bottom left of your computer screen and choose Run from the menu which appears The window shown in Figure 2 2 will appear Hun ti x Type the name of a program folder document or Internet resource and Windows wall oper it for you lt lt q _ This may be blank Cancel Browse Figure 2 2b The Windows Run window completed for installation from a CD ROM You next need to tell Windows where the CD ROM with the files is If you are installing the software from CD ROM the CD ROM drive is probably referr
119. tesi Please use the following in the large bo Patient Number UK Cystic Fibrosis Database Clinic Number 2 rth ory ect ihe Fave ence Annual Review 2 of 3 Supplemental feeding in last period TGk all supplemental feeding admin period Transplant status in last period Cris Not referred for transplant in last period Disa Received no supplemental feeding in last period Des Oral supplements Ops Nasogastric Den Gastrostomy Oes Parenteral Deo Other supplemental feeding as specified below teo Dims Active list Dinn Reserve list Cine Currently being evaluated Dino Rejected by transplant centre Ctro Patient refused offer of transplant Transplant performed Dhan Bilateral lung D22 Unilateral lung hes Heart lung Dia Liver Opn Child AND OR no evidence of fertility detected hres Other as TIT below 125 Dez Self or partner is currently pregnant Number of spontaneous abortions Lie Number of induced abortions Lisa Number of pre term births me Number of full term births L Number of still births Ln Cre Other evidence of fertility as specified
120. the top left hand quadrant of the user permissions browser For example to give the change the password of user fiona muhsin select the user name fiona muhsin see Figure 5 25 Using the mouse click on the icon labelled Change user password in the bottom left quadrant of the screen You be prompted to enter a new password for the user The password should be at least eight characters long contain at least one letter and one number and is case sensitive You will be asked to enter the password a second time to guard against typing errors The password is changed immediately To change the password of another user select that users user name and repeat the procedure When you have finished click on the open door icon at the bottom right of the screen to return to the main menu 5 6 4 Deleting a user account To delete a user account log into the system see 5 1 as administrator giving the appropriate password or as a user with permission to administer users Click on the Administer users button on the main menu Figure 5 21 You will then see the user permission browser Use the mouse to select the user you wish to delete in the Choose a user identifier window in the top left hand quadrant of the user permissions browser For example to delete the user fiona muhsin select the user name fiona muhsin see Figure 5 25 Using the mouse click on the icon labelled Delete selected
121. therwise last perod is defined as the previous 12 months Cancel Figure 3 18 Completing the first annual review data entry screen transcribed from page one of the annual review form UK Cystic Fibrosis Database Annual Review 1b of 3 Ea UK Cystic Fibrosis Database gap apr i993 Annual Review 1b of 3 Please use the following codes inthe large boxes where necessari Unknown Mot done x Mot applicable Patient Code Q04G M6498 6HHC 7 G51 L 1 Clinic Code P171F a 2 Complications in the last Period NB EVERY FIELD MUST HAVE AN ENTRY M tick all complicationsthat occured in the last period TAB Nest field SHIFT TAB Previous field P ifad ne conpieaon ne ped SPACE Select tem CURSOR KEYS Choose tem T C ii Elevated respirator rate at rest E 25 Gallbladder disease requiring surgery 12 Regular coughing at rest T 26 Pancieaiiis O 13 Chronic pseudomonas infection p2 kolates year E 27 bnornal iver functor tess z 14 Chronic staphylococcus aureus b2 isolates year T a wilh poilal hapeienaon ta Nasal polyps 0 29 Diabetes requiring ingulin oral hypoglycaemic E 6 Allergic Broncho Pulmonary Aspergillosis T 20 Arthropathy C 17 Asthma I 31 Clubbing 0 18 Prheumothoras requiring chest drain T 32 Raised IgG O 05 Massive haemoptysis p 240cc in 24hrs or transfused T aiCancer 9 z 20 Distal Intestinal Obstruction Syndrome T 34 Had I v port replaced E 21 Haematemesis 35 Developed other complication
122. tient refused to be genotyped Please enter genotype exactly as reported by laboratory Allele 1 Allele 2 27 Age at diag rea t Fibrosis i Age at diagno mm 29 months R1162 R117H Referral b Diagnosis Delta I507 O o C e A D p32 C 33 Dettal O 132 C Bal E E Failure to thrive and or malnutrition I 36 E 37 Steatorrhoea and or abnormal stools and or malabsorption MC 38 C 39 Figure 5 16 A detail from a screen demonstrating selecting the first item from a drop down list Note the downward pointing arrow with a line underneath just to the left of the field label 27 Clicking on this with the mouse makes the drop down list appear If the focus the flashing vertical line also called the cursor is in a field and you try to click on another field or button a message similar to that shown in Figure 5 17 may appear This means that you must enter a value if it will be discarded if you are abandoning a form in the field with the focus before you move to the new field or button you are trying to click on PreQL interpreter Ci You must enter a value for clinician initials Figure 5 17 A message box warning that a value is required for a field 5 4 Browsing and amending data appropriate browse amend option from the main menu see You will normally enter new data 1 e data which has just been collected in a clinic If however you want to check data entered previously or
123. tner is currently pregnant Number of spontaneous abortions Ih Number of induced abortions g4 Number of pre term births l Number of full term burths 98 Number of still burths Treatment compliance in last period fig you consider the patiantic be Gick one of thie following nz Non complier Social impact of CF in last period perms seat ag e y Cla Average complier Sec ot days olf work on school in the last periods Qno Does not attend school or work Chet None Mirsa Does everything he she is told ta do Most recent Chest X Ray in last period O nao X Ray measurements made Northern Score preferred Award 0 4 poings as below for each quadranr of the X ray toal and add up to four discretionary points for focal lesions ete Ona Less than two weeks Dooa Less than two months Eiros Two months or more How many days Was the patient i ire fi hospital because o OF mer E period YEN e RS a beet eee a oer pauni re Roane aoe gee Gac ea eee pane T Citos tos Less than two weeks Oron Less than two months 0 Normal no CF lung disease evident 1 Mild Minimal increase in linear markings and or nodular cystic lesion up to 0 5 cm diameter 2 Moderue More pronounced linear markings and or more widespread nadular cysuc lesions 3 Severe Prominent increase in linear markings grofuse nodular cystic lesions large areas of collapse consolidaton 4 Very sever
124. to the next screen in a series of screens 10 Every question on the screens and the forms has a number in square brackets to the right of the question These numbers match on the paper and electronic versions of the forms and should be used to refer to the questions over the telephone Note on Label Specification Order Avery labels L7651 Address for use when producing patient registration labels Good luck The UK Cystic Fibrosis Database Development Team l If you don t know say so by entering a X or into the text box see section 7 2 Installing the software 2 1 Unpacking You should have received Software distribution floppy disk or CD ROM And or This manual If anything is missing please contact technical support By post UK CF Database Technical Support Maternal amp Child Health Sciences University of Dundee Dundee DD1 9SY Telephone 01382 632596 Facsimile 01382 633958 2 2 Installing the Data Entry Software on your computer If you use Microsoft Windows 95 or Windows NT 4 x the screen when you first load Windows will look similar to that illustrated in Figure2 1 follow the instructions in section 2 2 la and 2 2 1 b a LJ Network Neighborhood Saa M X Inbox i hy ty 19 00 Figure 2 1 A computer running Windows 95 If your computer screen looks similar to this go to section 2 2 la Warning If you already have Access 95 Databases on your machine ins
125. user in the bottom left quadrant of the screen You will be asked to confirm that you really want to delete the user Once confirmed the user will be deleted To delete another user select that users user name and repeat the procedure When you have finished click on the open door icon at the bottom right of the screen to return to the main menu 5 7 Configuring the system Warning The software comes configured correctly for 90 of users Only follow the instructions in this section if you are sure you know what your are doing Incorrect use of some of these options may cause data loss Please contact technical support if you are in any doubt If you choose the System icon on the main screen and your user account is configured with the appropriate permissions see 5 6 Administering users you will see a screen similar to Figure 5 27 UE Cerbo Fibiodia Dalabage byabem Lonhgqurshon E UK Cystic Fibrosis Database System Configuration Browser Data transfer configuratian software configuration Milii Miba tiini Mi Daliai bitip ii ieee ehk bhp mat Bewe Thi eid dts he chef al fie tech l Ge edio bonia Thit seats bhe ce call Pike aed bo ate a bai od a cd te data to he nabonal cata Cente The chou normaly be a databace Ther fie Gan be weed io eoma coip kopp dre eg eee be o Ee eee te pata he nope OF Be poige re eal eed boa ae eee Pressed Gores het sapi nne Vall Bape chat bo thes fecha Weil ct ball and chen
126. ute of intravenous antibiotics 4 2 2 6 Organisms cultured in the last period Please indicate the type of all the organisms that were isolated and the source of the culture 4 2 2 7 Annual Review 2 of 3 4 2 2 8 Supplemental feeding in last period In view of the evidence linking nutritional status with outcome we are interested to find out how many patients receive supplemental treatment and by what route 4 2 2 9 Evidence of fertility in last period The outcome for pregnancy is variable in different regions of the world Clearly for all children the first box 91 should just be ticked The outcome of any pregnancy in a female should be indicated by entering the appropriate number in the box If the patient is male we are interested in the very fact that paternity has happened 4 2 2 10 Social impact of CF in last period Young i e pre school children need to have box 100 ticked and the remainder are self explanatory For the section How many times did the patient visit a CF clinic in the last period exclude the current clinic visit and add in all other CF clinics attended by the patient The second half of the question refers to the patient who comes for shared care to your centre If this patient is seen by one other doctor in another clinic who provides care for the cystic fibrosis outside your centre then enter the number 1 in the field 110 4 2 2 11 Glucose tolerance in last period It is recommended that patient
127. vident 1 Mild Minimal increase in linear markings and or nodular cystic lesion up to 0 5 cm diameter 2 Moderate More pronounced linear markings and or more widespread nodular cystic lesions Prominent increase in linear markings profuse is large areas of 3 Severe 4 Very severe Little or no area of normal seen dense infiltration Northern Score LL rsa 20 and or Chrispin Norman score if done Please see the user manual for a description of the Chrispin Norman score Chrispin Norman score 136 Below are the three pages of the annual review form See Fig 3 13 for enlarged forms Please use the following in the la ge boxes if necessary Unknown Not done X Not applicable Patient Number UK Cystic Fibrosis Database Clinic Number Annual Review 3 of 3 Shwachman score at review please give detalls ot clinical measliremenis at review To compute a Shwachman score award up to 25 points for each of the four sections listed below and total General activity 21 25 Full normal activity Goes to school regularly 16 20 Lacks endurance Tires at end of day Good schoo attendance 11 15 Tires easily after exertion May rest during day Fair school attendance 610 _Dyspnoeie after short walk Rests a good deal Poor school attendance OS Confined to bed or chair Orthopnocic
128. view data entry screen transcribed from page one of the annual review form The following screen collects X ray and clinical trial data Note that you have a choice of scoring systems to use when describing X ray results The Northern score is the preferred indicator UK Cystic Fibrosis Database Annual Review 2d73a of 3 E UK Cystic Fibrosis Database aap apr jogs Annual Review 2d 3a of 3 Please Use the following codes in the large boxes where necessa Unknown Mot done x Not applicable Patient Code Q04G MB48 6HHC YG51 L ry Clinic Code P171F 2 Most recent Chest X Ray in last period g1 Superior g2 N O 133 Ho X Ray measurements made Norfnem Seore Award 0 4 points as below for each quadrant of the t ray total and add up to four discretionary points for focal Lateral Lateral lesions etc 0 Mormal no CF lung disease evident Q4 Inferior 3 1 Mild Minimal increase in linear markings andor mh risoin Norman Score nodular cystic lesion up to 0 5 cm diameter Chrisnin N Score 00H35 2 Moderate More pronounced linear markings andor E E E bo 133 more widespread nodular sytic lesions Shwachman score at review 3 Severe Prominent increase in linear markings E F J 36 25 profuse nodular cystic lesions large areas General activity of collanse consolidation Physical examination 137 25 a 4 Ver severe Little orno area of normal seen dense Nutrition 138 25 a infiltrations Chest ray 2 139 4 2
129. vity Goes to school regularly 16 20 Lacks endurance Tires at end of day Good school attendance 11 15 Tires easily after exertion May rest during day Fair school attendance 6 10 Dyspnoeic after short walk Rests a good deal Poor school attendance 0 5 Confined to bed or chair Orthopnoeic General activity score Physical examination 21 25 Normal No cough Clear lungs No defg Respiratory rate normal 16 20 Resting respiratory rate normal Rare emphysema Clear lungs 11 15 Occasional cough Mild emphyse elevated Rarely localised crepitatigfis Early clubbing 6 10 Frequent cough usually productive Moderate emphysema May have chest deformity Chestfetraction Crepitations present Moderate clubbing 0 5 Severe coughing spells Tachyp Extensive pulmonary changes failure Marked clubbing gbughing Minimal Physical examination core i 25 Nutrition 21 25 Height and weight abovg 25 centile Well formed stools 16 20 Height and weight at 13 20 centile Stools slightly abnormal 11 15 Height and weight abfve 3 centile Abnormal stools Poor muscle tone with reguced muscle mass 6 10 Height and weight felow 3 centile Abnormal stools Abdominal distengion Flabby muscles 0 5 Marked malnutrifion Protuberant abdomen Rectal prolapse Large foul freqfent fatty stools LT hse 25 Nutrition sobre Chest X ray 21 25 Clear lung fields 16 20 Early empfysema Minimal accentuation of bronchova
130. your local data collection software which has been upgraded to be UK CF Database compatible and transfer the data to the national centre Keep the yellow pages of the form in the notes as it is your record of the clinic visit The white copy should be filed centrally This file may be audited It should be forwarded to the UK CF Data Centre in Dundee when the data transfer is done electronically 4 3 2 Guide to the sections and questions AR version This form has date of last clinic visit included so that we can make an assessment for the whole of the UK except for Scotland of the interval between clinics This is important information for what follows on the rest of the form We also require an assessment of the CF expertise of the individual filling out the details 4 3 2 1 Hospital admissions since last clinic visit Our assessment of the Scottish returns show that the commonest reason for admission was chest infection The second commonest was an admission for investigation hence the request about the nature of the investigation Please show the number of days of each admission in the relevant boxes but tick the small box alone if there were more than three admissions 4 3 2 2 Short term drugs since last clinic visit We are asking here about oral or IV antibiotics and how long each course was given Once again if there were more than three courses given tick the smaller box Other drugs should be indicated in the boxes below If there

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