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Verstraete J.1, Jelsma J.2, Scott D.3, Ramma L.4
1Red Cross War Memorial Children's Hospital, Physiotherapy, Cape Town, South Africa, 2University of Cape Town, Division of Physiotherapy, School of Health and Rehabilitation Sciences, Cape Town, South Africa, 3University of Cape Town, Faculty of Health Sciences, Cape Town, South Africa, 4University of Cape Town, Communication Sciences and Disorders, Cape Town, South Africa
Background: Health related quality of life (HRQoL) measures are increasingly included in epidemiological research of perceived health problems, medical audits, outcome measures in health services, evaluation research and cost-utility analyses and valid measures are thus required for all ages. There are very few HRQoL instruments available for very young children and none of these measures are preference based and can be used for cost-utility analysis or to measure HRQoL across the life-span.
Purpose: To develop a HRQoL instrument for very young children, to be completed by proxy derived from an existing HRQoL instrument, the EQ-5D-Y a measure validated in South Africa with older children. The new measure should also have the potential to be utilised for cost-utility analysis.
Methods: The Alpha Draft of the instrument was based on a systematic review of Generic and Preference based HRQoL measures for children and the results of cognitive interviews with caregivers of very young children who completed the EQ-5D-Y. The care-givers were requested to identify items to be considered for inclusion, the wording and layout of the new measure. The item pool generated from the literature reviews and cognitive interviews were assessed through a Delphi study with experts in the field. This process resulted in a reduction of items for the final, Beta draft of the measure.
Results: The perceptions of 84 caregivers of children under seven years of age attending acute health service, chronic health care service and a day care centre suggested that the EQ-5D-Y dimensions were appropriate for children over the age of 3 years. Caregivers of very young children suggested that general movement be included for the very young child instead of their ability to walk. Similarly looking after myself was problematic in the very young child as children only assisted with these tasks. Usual activities for all children was said to be more appropriately described by play. Caregivers of very young children had difficulty completing worried, sad or unhappy and suggested behaviour descriptors to identify these emotions. These results indicated that there was a need to develop a HRQoL measure for children aged 0-3 years. The domains identified from review of the literature and the cognitive interviews were further tested in a two-part Delphi study. Domains included in the Alpha Draft which were consistent with the conceptual frame work included: movement; daily activities; play; pain; controlling emotions, relationships, behaviour, communication, eating, sleeping.
Conclusion(s): The domains included in the EQ-5D-Y are relevant for children aged 3-7 years thus; a new HRQoL measure for children aged 0-3 years was developed. Age appropriate domains and domain descriptors were established through review of the literature, cognitive interviews and a Delphi study. These domains need to be reduced before validity and reliability testing.
Implications: The new measure can be used to evaluate the outcome of physiotherapy intervention and issue of assistive devices. This would not only allow change in management to ensure improved HRQoL for the client but could potentially inform allocation of health resources in the future. The new measure will be tested for reliability and validity.
Funding acknowledgements: We acknowledge the funding from the EuroQoL Foundation for part of this study.
Topic: Outcome measurement
Ethics approval: : Ethical approval was granted by the University of Cape Town Human Research Ethics Committee.
All authors, affiliations and abstracts have been published as submitted.
