A systematic literature review of preference-based health related quality-of-life measures applied and validated for use in childhood and adolescent populations in sub-Saharan Africa

Objectives: Consideration of health status in children and adolescents now includes broader concepts such as health-related

quality-of-life (HRQoL). Globally, there is a need for relevant preference-based HRQoL measures (PBMs) for use in children

and adolescents, yet measurement of HRQoL in these groups presents particular challenges. This article systematically

reviews the available generic childhood PBMs and their application and cross-cultural validation in sub-Saharan African (sSA).

Methods: A systematic review of published literature from January 1, 1990, to February 8, 2017, was conducted using MEDLINE

(through OvidSP), EMBASE (OvidSP), EconLit (EBSCOhost), PsycINFO, Web of Science, and PubMed.

Results: A total of 220 full-text articles were included in a qualitative synthesis. Ten generic childhood PBMs were identified,

of which 9 were adapted from adult versions and only 1 was developed specifically for children. None of the measures were

originally developed in sSA or other resource-constrained settings. The Health Utilities Index Mark 3 (HUI3) and the EQ-5D-Y

were the only measures that had been applied in sSA settings. Further, the HUI3 and the EQ-5D-Y were the only generic

childhood PBM that attempted to establish cross-cultural validation in sSA. Five of the 6 of these validation studies were

conducted using the EQ-5D-Y in a single country, South Africa.

Conclusions: The findings show that application of generic childhood PBMs in sSA settings has hitherto been limited to the

HUI3 and EQ-5D-Y. Most adaptations of existing measures take an absolutist approach, which assumes that measures can be

used across cultures. Nevertheless, there is also need to ensure linguistic and conceptual equivalence and undertake

validation across a range of sSA cultural contexts.