Development of an English Health-Related Quality of Life (HRQoL) instrument for very young children, to be completed by proxy




Poster session 1 Wednesday: Evidence production and synthesis


Wednesday 13 September 2017 - 12:30 to 14:00


All authors in correct order:

Verstraete J1, Jelsma J2, Ramma L3
1 Division of Physiotherapy, Red Cross War Memorial Children's Hospital, South Africa
2 Division of Physiotherapy, University of Cape Town, School of Health and Rehabilitation Sciences, South Africa
3 Division of Communication Sciences and Disorders, University of Cape Town, School of Health and Rehabilitation Sciences, South Africa
Presenting author and contact person

Presenting author:

Janine Verstraete

Contact person:

Abstract text
Background & Aims: There is an increasing awareness that, in order to monitor health outcomes both mortality and morbidity need to be assessed. A common metric used to measure morbidity and functional limitation is the Quality adjusted life year or QALY, which incorporates time spent in a health condition and HRQoL (1). This is of increasing importance in low-income countries where programmes have been implemented to address the high burden of child mortality. The ‘first 1000 days’ is one such initiative adopted by the WHO to improve nutrition, healthcare and social support for both mother and child. One of the aims is to improve quality of life during this vulnerable period (2). As there is currently no appropriate HRQoL measure for this age, we set out to develop a HRQoL instrument for children from 1 month to 3 years old, amenable to the elicitation of preference weights.

Methods: The beta draft of the instrument was based on a systematic review of HRQoL measures for children and the results of cognitive interviews with caregivers of very young children who completed the EQ-5D-Y, an existing validated HRQoL measure for older children. The caregivers were requested to identify items to be considered for inclusion, wording and layout of the new measure. The item pool generated from the literature reviews and cognitive interviews were assessed through a Delphi study. These items were further reduced through development of a preliminary measure, subsequent testing, reduction of items and retesting.

Results & Conclusions: The methodology used to identify candidate items was rigorous and resulted in a smaller core set to be tested. Items were developed to be observable with dimension descriptors referring to ‘age-appropriate behaviour’. Caregivers appear to be able to reliably report on HRQoL of their very young children. It seems that it is unnecessary to develop different measures for different age children as long as there are appropriate descriptors. Thus, the possibility of developing a valid and reliable proxy version for infants and toddlers appears very promising. It is recommended that the beta draft be tested for validity and reliability.