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Neuropediatrics 2016; 47(02): 097-106
DOI: 10.1055/s-0036-1571801
Original Article
Georg Thieme Verlag KG Stuttgart · New York

Health-Related Quality of Life in Children and Adolescents with Cerebral Palsy: A Secondary Analysis of the DISABKIDS Questionnaire in the Field-Study Cerebral Palsy Subgroup

Esther Mueller-Godeffroy
1   Department for Pediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany
,
Ute Thyen
1   Department for Pediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany
,
Monika Bullinger
2   Department of Medical Psychology, University Hamburg-Eppendorf, Hamburg, Germany
› Author Affiliations
Further Information

Publication History

07 October 2015

14 December 2015

Publication Date:
15 February 2016 (online)

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Abstract

Introduction Health-related quality of life (HRQOL) instruments are increasingly being used to evaluate interventions and therapy outcomes in children and adolescents with cerebral palsy (CP). A variety of psychometrically sound and validated generic and disease-specific instruments are available. A third type of instrument, the chronic-generic instrument, pertains to features of HRQOL that are shared by various chronic conditions.

The DISABKIDS family of questionnaires consists of a chronic-generic core measure (DCGM-37) and several condition-specific modules, among these, a CP module (CPM). The objective of this article was to describe the performance and, specifically, the validity of the DCGM-37 and CPM in children and adolescents with CP.

Methods Psychometric properties of the DCGM-37 and the CPM are presented. The discriminant validity was assessed compared with generic measures of HRQOL regarding different levels of impairment (physical independence; developmental delay).

Results A total of 86 patients with CP (mean age 13 years, range 7–19 years) and 78 main caretakers participated in this study. The DCGM-37 and CPM showed much better discriminative ability as compared with generic questionnaires.

Conclusions The DCGM-37 and CPM were able to differentiate between patients with different levels of impairment and can be recommended for treatment evaluation and group comparison in clinical studies of children and adolescents with CP.

Keywords

health-related quality of life - cerebral palsy - children - adolescents

Note

Access to the DISABKIDS family of instrument is provided through www.DISABKIDS.org.


 

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