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

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

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

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  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 13-16 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) specific chronic generic generic

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

  9. Item Selection Results

  10. DISABKIDS Field Study(N = 1152 ) Gender Male 52% Female 48% Age 8-12 53% 13-16 47% Disease Asthma 405 Skin 65 Diabetes 207 CP 91 Epilepsy 191 CF 43 Arthritis 150

  11. Final DISABKIDS Modules Chronic generic module (37 items) - for all chronic disease -6 domains (α .70 - .87) Disease specific modules (10 - 12 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 * Gender Male 59% 62% Female 41%38% Age 8-12 66% 13-16 34% Severity low 43%47% mild 28%30% moderate 20%18% severe 9%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. Child/Adolescent vs Parent * * * * * Significant (p < 0.05)

  22. Domain scores by Severity

  23. Missed School Days

  24. IMPLEMENTATIE STUDIE GOUDA Onderzoek: april - september 2004

  25. Aantal Percentage Geslacht Meisje Jongen 41 55 43% 57% Afname Kliniek Thuis 75 23 77% 23% Gezondheid uitstekend zeer goed goed redelijk slecht 13 20 36 27 - 13% 21% 38% 28% - Sport ja nee 15 81 16% 84% Hoe vaak <1 1 2 3x of vaker 1 23 21 38 1% 28% 25% 46% Sociodemografische gegevens

  26. Module Domains No of items n original score transformed 0-100 score Cronbach’s alpha Mean (SD) Mean (SD) Chronic Asthma Independence Limitation Emotion Social exclusion Social inclusion Treatment Impact Worry 6 6 7 6 6 6 6 5 94 89 92 93 91 89 93 94 4.2 (.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) .7748 .7220 .8055 .7272 .6926 .7682 .7469 .7435 Betrouwbaarheid van de DISABKIDS vragenlijst Gegevens Kind groep Gouda (total n=97)

  27. Kind Ouder 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%) Classificaties van astma ernst Subjectieve beoordeling van de astma ernst

  28. Ernst Ouders (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%) Classificaties van astma ernst 2 Berekende beoordeling van ernst

  29. Kind subj ouders subj Ouders (Rosier) Verpl. subjectief Verpl. objectief Kind subj Ouders sub ouders obj Verpl. subj Verpl. obj - .355 .251 .183 .228 - .561 .316 .373 - .136 .178 - .645 - Classificaties van astma ernst 3 Correlaties tussen metingen

  30. Domeinen Pearson Chronic Asthma Independence Limitation Emotion Social exclusion Social inclusion Treatment Impact Worry .216 .535* .383* .223 .094 .531* .506* .252 Correlatie ouders en kind

  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 071-526 1666 h.m.koopman@lumc.nl WWW.DISABKIDS.DE

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