THE USE OF THE EQ-5D-Y HEALTH RELATED QUALITY OF LIFE OUTCOME MEASURE IN CHILDREN: PSYCHOMETRIC PROPERTIES AND FEASIBILITY

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Scott D.1, Jelsma J.1
1University of Cape Town, Department of Health and Rehabilitation Sciences, Cape Town, South Africa

Background: The EQ-5D-Y, is a paediatric, Health Related Quality of Life outcome measure. The feasibility, reliability and validity of the measure was established in 2010, but using mainly healthy, typically developing children, between the ages of eight and 12 years. Following this study a recommendation was made to apply the measure in a longitudinal, clinical study to determine its responsiveness to change over a period of time and to monitor effects of treatment.

Purpose: To determine whether the EQ-5D-Y is reliable, valid and useful when used by physiotherapists in targeting their management to better address the problems identified by the child.

Methods: A longitudinal, analytical descriptive study design was used. Four groups of children were recruited: 105 Main Stream School children (MS); 35 Special School children with chronic physical disabilities (SS); 32 from an institution for chronically ill children (CI); and 52 acutely ill (AI) children in hospital, totalling 224. The EQ-5D-Y was administered at baseline, three months and six months or, in the case of AI, at admission and discharge. The PedsQL was used as a parallel HRQoL and the WeeFim as a functional measure. A self-designed questionnaire was completed by the therapists managing the children. Both descriptive and inferential statistics were used. Reliability was calculated using Cohen’s kappa coefficient. Discriminant and convergent validity was examined using Kruskal-Wallis ANOVA by ranks. Responsiveness was calculated using Effect Size.

Results: The level of problems on the dimensions was associated with institution and in all cases, apart from Mobility, the AI children reported more problems. On test-retest, the measure was reliable (kappa coefficient ranging from 0.365 – 0.653 for dimensions and an ICC of 0.765 for VAS). Discriminant validity was evident between the AI and the MS school, only, on all dimensions p 0.001. Convergent validity between EQ-5D-Y and PedsQL was evident only at the AI for all similar dimensions. The responsiveness to treatment over time was largest in the AI (0.38 Medium effect size p=0.015). The EQ-5D-Y only took five minutes to complete. Six of the nine therapists who took part in the study, found the measure easy to apply, used the information in the management of the child and would continue to use it in future.

Conclusion(s): The psychometric properties of the EQ-5D-Y were variable in the different groups of children, but can be used with confidence in AI.

Implications: The EQ-5D-Y can be used with confidence as an outcome measure for acutely-ill children. It appears to be feasible and useful to include the EQ-5D-Y in routine paediatric assessments, by physiotherapists, to guide the management of children with a health condition.

Funding acknowledgements: EuroQoL Research Foundation

Topic: Paediatrics

Ethics approval: Human Research Ethics Committee of the University of Cape Town (HREC REF 354/2013)


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