DISABKIDSDISABKIDS

HRQoL assessment in HRQoL assessment in Children with AsthmaChildren with Asthma

Dr. H.M. Koopman

DISABKIDSDISABKIDS

• 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

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

PARTICIPATING COUNTRIES

STUDY DESIGN

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

Components of QOL in children

STATEMENTS

1380 Disease specific statements

1647 Statements relevant to any chronic disease

488 General statements (not disease related)

generic

chronic generic

specific

Structure of chronic generic moduls

Independence

Physical Limit.

Medication

Emotion

Social Inclusion

Social Exclusion

physical

emotional

social

HRQOL

Item Selection Results

Original Pilot test Field study DISABKIDS

Chronic generic 1647 119 56 37

Asthma 304 32 15 11 Epilepsy 179 28 16 10 Arthritis 340 44 19 12 CF 167 38 14 10 Diabetes 141 28 15 10 CP 183 26 16 10 Skin disease 66 36 19 12

DISABKIDS Field Study (N = 1152 )

Gender Male 52% Female 48%

Age 8-12 53%13-16 47%

Disease Asthma 405 Skin 65Diabetes 207 CP 91Epilepsy 191 CF 43Arthritis 150

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

DISABKIDS DomainsIndependence

Physical

Emotion

Soc. Excl.

Soc. Incl.

Medical

Asthma impact

Asthma worry

SmileyGeneric (KIDSCREEN)

Chronic Generic Module

Disease Specific Module AsthmaGeneric Module

50

60

70

80

90

100

Inde

pend

ence

Physic

al

Emotion

Soc. E

xcl.

Soc. I

ncl.

Med

ical

Smiley

Generi

c

AsthmaDiabetesArthritisCFCPEpilepsyAtopic dermatitis

Chronic & Generic Domains

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

How severe was your asthma

0

10

20

30

40%

ChildParent

Parent vs Clinician severity

0

10

20

30

40

50

LowMild

Moderate

Severe

%

Parent objective score

Physician objective score

Physician subjective score

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)

50

60

70

80

90

100

Germany

Netherlands

UK

France

Greece

Sweden

Austria

Domains per Country (asthma)

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)

50

60

70

80

90

100

Child (8-12)

Adolescent (13-16)

Child vs. Adolescent

*

*

*

* significant p< 0.05

50

60

70

80

90

100

Child/Adolescent

Parent

* Significant (p < 0.05)

Child/Adolescent vs Parent

**

*

*

30

40

50

60

70

80

90

100

Low

Mild

Moderate

Severe

Domain scores by Severity

50

60

70

80

90

100

No sick days

1 or more sickdays

Missed School Days

IMPLEMENTATIE STUDIE

GOUDA

Onderzoek:april - september 2004 

Sociodemografische gegevens   Aantal Percentage

Geslacht MeisjeJongen

  41 55

  43%57%

AfnameKliniekThuis

  7523

  77%23%

Gezondheiduitstekendzeer goedgoedredelijkslecht

  13203627-

  13%21%38%28%-

Sportjanee

  1581

  16%84%

Hoe vaak<1123x of vaker

  1232138

  1%28%25%46%

Betrouwbaarheid van de DISABKIDS vragenlijst

Gegevens Kind groep Gouda (total n=97)

Module DomainsNo of items

n

original score

transformed 0-100 score

Cronbach’s alpha

Mean (SD) Mean (SD)

Chronic      Asthma 

IndependenceLimitationEmotionSocial exclusionSocial inclusionTreatment 

ImpactWorry

667666 

65

948992939189 

9394

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

Classificaties van astma ernst

Subjectieve beoordeling van de astma ernst

   Kind Ouder

Ernst van astmanietbeetjeredelijkbehoorlijkheel 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 2

Berekende beoordeling van ernst

Ernst Ouders (Rosier) Verpl. subj. Verpl. obj.

lowmildmoderatesevere

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 3

Correlaties tussen metingen

      

Kind subj ouders subj

Ouders (Rosier)

Verpl. subjectief

Verpl. objectief

Kind subjOuders subouders objVerpl. subjVerpl. obj

-.355.251.183.228

  -.561.316.373

    -.136.178

      -.645

        -

Correlatie ouders en kind

  

Domeinen Pearson

Chronic      Asthma 

IndependenceLimitationEmotionSocial exclusionSocial inclusionTreatment ImpactWorry

.216

.535*

.383*

.223

.094

.531* .506*.252

Hoe ernstig vind jij je astma ?

30

40

50

60

70

80

90

100

Niet

Beetje

Redelijk

Behoorlijk

Hoe ernstig vind jij je astma ? 2

30

40

50

60

70

80

90

100

Indep

enda

nce

Physic

al

Emotio

n

Soc.

Excl

Soc.

Incl

Med

icatio

n

Asthma i

mpact

Asthma w

orry

Sport niet

Sport wel

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

SSvW

Vragenlijsten

Programma Runquest

Beschikbare vragenlijsten

RUNQUEST

Start download

Download proces

DISABKIDS Chronisch generiek

DISABKIDS CG Vragen

DISABKIDS Short Form

Database

Profielscore

Evaluatie

DISABKIDS Einde

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)

State of the art

I am young, but…I will grow

Dr. H.M. Koopman

Department of Paediatrics

Leiden University Medical Center

071-526 1666

h.m.koopman@lumc.nl

WWW.DISABKIDS.DE