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DISABKIDS HRQoL assessment in Children with Asthma Dr. H.M. Koopman.

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Presentatie over: "DISABKIDS HRQoL assessment in Children with Asthma Dr. H.M. Koopman."— Transcript van de presentatie:

1 DISABKIDS HRQoL assessment in Children with Asthma Dr. H.M. Koopman

2 DISABKIDS Project: DISABKIDS - QOL Quality of Life in Children and Adolescents with Disabilities and their Families - Assessing Patients Views and Patient Needs for Comprehensive Care Monica Bullinger - University of Hamburg Ulrike Ravens Sieberer – KIDSCREEN Robert Koch Institute Berlin

3 DISABKIDS POPULATION Children and Adolescents (4-7, 8-12 and yrs) Parents Chronic disease Asthma, Arthritis, Diabetes, Epilepsy, Cerebral Palsy, Atopic dermatitis, Cystic Fibrosis

4 PARTICIPATING COUNTRIES

5 STUDY DESIGN -Literature -Focus groups -Item selection -Translations -Pilot study and evaluation -Field study and evaluation -Implementation

6 Components of QOL in children

7 STATEMENTS 1380 Disease specific statements 1647 Statements relevant to any chronic disease 488 General statements (not disease related) generic chronic generic specific

8 Structure of chronic generic moduls Independence Physical Limit. Medication Emotion Social Inclusion Social Exclusion physical emotional social HRQOL

9 Item Selection Results

10 DISABKIDS Field Study (N = 1152 ) GenderMale 52% Female48% Age % % DiseaseAsthma405Skin65 Diabetes207CP91 Epilepsy191CF43 Arthritis150

11 Final DISABKIDS Modules Chronic generic module (37 items) - for all chronic disease - 6 domains (α ) Disease specific modules ( items) - specific to a disease - 1 or 2 domains Smiley Module (12 items) - generic

12 DISABKIDS Domains Independence Physical Emotion Soc. Excl. Soc. Incl. Medical Asthma impact Asthma worry Smiley Generic (KIDSCREEN) Chronic Generic Module Disease Specific Module Asthma Generic Module

13 Chronic & Generic Domains

14 Asthma Field study (N = 405) Rosier * GenderMale 59% 62% Female41% 38% Age % % Severitylow43% 47% mild28% 30% moderate20% 18% severe9% 5% * Rosier et al. Am J Respir Crit Care Med. 1994

15 How severe was your asthma

16 Parent vs Clinician severity

17 Asthma Module Do you feel scared that you might have difficulty breathing? (worry) Do you feel short of breath when you do sports? (impact) Do you feel that you get easily exhausted? (impact)

18 Domains per Country (asthma)

19 Correlations Moderate correlations of the chronic generic domains with existing measures - Anchor items (KINDL and CHQ) - DUX - KIDSCREEN generic module - FS-II-R (only parents)

20 Child vs. Adolescent * * * * significant p< 0.05

21 * Significant (p < 0.05) Child/Adolescent vs Parent * * * *

22 Domain scores by Severity

23 Missed School Days

24 IMPLEMENTATIE STUDIE GOUDA Onderzoek: april - september 2004

25 Sociodemografische gegevens AantalPercentage Geslacht Meisje Jongen % 57% Afname Kliniek Thuis % 23% Gezondheid uitstekend zeer goed goed redelijk slecht % 21% 38% 28% - Sport ja nee % 84% Hoe vaak < x of vaker % 28% 25% 46%

26 Betrouwbaarheid van de DISABKIDS vragenlijst Gegevens Kind groep Gouda (total n=97) ModuleDomains No of items n original score transformed score Cronbach’ s alpha Mean (SD) Chronic Asthma Independence Limitation Emotion Social exclusion Social inclusion Treatment Impact Worry (.6) 3.9 (.7) 4.4 (.6) 4.6 (.5) 3.9 (.7) 3.9 (.8) 3.7 (.7) 4.3 (.7) 79.9 (15) 71.5 (17) 84.7 (15) 90.4 (12) 72.1 (17) 72.2 (19) 66.7 (18) 83.4 (17)

27 Classificaties van astma ernst Subjectieve beoordeling van de astma ernst KindOuder Ernst van astma niet beetje redelijk behoorlijk heel erg 26 (27%) 33 (35%) 22 (23%) 13 (14%) 1 (1%) 16 (19%) 31 (36%) 26 (31%) 10 (12%) 2 (2%)

28 Classificaties van astma ernst 2 Berekende beoordeling van ernst ErnstOuders (Rosier)Verpl. subj.Verpl. obj. low mild moderate severe 46 (53%) 26 (30%) 15 (17%) - 13 (15%) 51 (61%) 17 (20%) 3 (4%) 6 (7%) 40(48%) 32 (38%) 6 (7%)

29 Classificaties van astma ernst 3 Correlaties tussen metingen Kind subjouders subj Ouders (Rosier) Verpl. subjectief Verpl. objectief Kind subj Ouders sub ouders obj Verpl. subj Verpl. obj

30 Correlatie ouders en kind Domeinen Pearson Chronic Asthma Independence Limitation Emotion Social exclusion Social inclusion Treatment Impact Worry *.383* *.506*.252

31 Hoe ernstig vind jij je astma ?

32 Hoe ernstig vind jij je astma ? 2

33 Conclusion * Differentiates for severity and illness * Comparison between countries * Advantage of several modules * Asthma module gives new data * Available in several languages * Proxy measure available

34 SSvW

35 Vragenlijsten

36 Programma Runquest

37 Beschikbare vragenlijsten

38 RUNQUEST

39 Start download

40 Download proces

41 DISABKIDS Chronisch generiek

42 DISABKIDS CG Vragen

43 DISABKIDS Short Form

44 Database

45 Profielscore

46 Evaluatie

47 DISABKIDS Einde

48 Computer programma Makkelijk hanteerbaar voor kinderen en ouders Geschikt voor herhaalde afname Aantrekkelijke lay out Screen en printer weergave resultaten in profielscores en tekst Koppeling individuele data -normbestand Bestandsbeheer (beveiliging)

49 State of the art I am young, but…I will grow

50 Dr. H.M. Koopman Department of Paediatrics Leiden University Medical Center


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