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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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slide1

DISABKIDS

HRQoL assessment in Children with Asthma

Dr. H.M. Koopman

disabkids
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
slide3

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

slide5

STUDY DESIGN

-Literature

-Focus groups

-Item selection

-Translations

-Pilot study and evaluation

-Field study and evaluation

-Implementation

slide7

STATEMENTS

1380 Disease specific statements

1647 Statements relevant to any chronic disease

488 General statements (not disease related)

specific

chronic generic

generic

structure of chronic generic moduls
Structure of chronic generic moduls

Independence

physical

Physical Limit.

Medication

emotional

HRQOL

Emotion

SocialInclusion

social

Social Exclusion

slide10

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

slide11

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

slide12

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

slide14

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

slide17

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)

slide19

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)

slide20

Child vs. Adolescent

*

*

*

* significant p< 0.05

slide21

Child/Adolescent vs Parent

*

*

*

*

* Significant (p < 0.05)

implementatie studie gouda
IMPLEMENTATIE STUDIE GOUDA

Onderzoek:

april - september 2004

sociodemografische gegevens

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
betrouwbaarheid van de disabkids vragenlijst

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)

classificaties van astma ernst

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

classificaties van astma ernst 2

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

classificaties van astma ernst 3

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

correlatie ouders en kind

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
slide33

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

computer programma
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
State of the art

I am young,

but…I will grow

slide50

Dr. H.M. Koopman

Department of Paediatrics

Leiden University Medical Center

071-526 1666

h.m.koopman@lumc.nl

WWW.DISABKIDS.DE