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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
WWW.DISABKIDS.DE