The use of generic health-related quality of life instruments among children and adolescents in low- and middle-income countries: a scoping review

Background Health-related quality of life (HRQoL) measures are widely applied in research and clinical practice; however, their use among children and adolescents in low- and middle-income countries (LMICs) has not been explored in depth to date. This is particularly important given that nearly two-thirds of the world’s children and adolescents reside in LMICs. This scoping review aims to identify generic HRQoL instruments used in studies of children and adolescents in LMICs, and to describe their use and reported psychometric properties. Method Guided by Arksey and O’Malley’s framework, a search for peer-reviewed papers published between 1 January 2000 and 31 December 2024 was conducted in six databases (Medline, Embase, PubMed, Scopus, CINAHL, and Web of Science). The review included papers reporting the use of generic HRQoL instruments among children and adolescents aged 0–19 years in LMICs. Results A total of 152 papers originating from 22 (of 75) LMICs met the inclusion criteria. Most papers were from two countries: India 50 (32.9%) and Egypt 25 (16.5%). Eight generic HRQoL instruments (PedsQL 4.0 GCS, KIDSCREEN-10/27/52, HUI-2/3, EQ-5D-Y-3L/5L, PROMIS-25, PedsQL Short Form (15-items), EQ-5D-3L/5L, and SF-36) were identified. Of these, PedsQL 4.0 GCS was reported in 78% of papers reviewed. Only eleven studies (7.2%) reported use of the instruments in the general population, and only one generated population norm data. Very few studies 2 (1.3%) were conducted in the younger age group (≤ 4 years). Three-quarters of the studies (34.9%) included both self- and proxy-reported HRQoL data. Instruments identified were most often used for general health assessment (77.6%); only 9.9% of studies evaluated treatment or intervention outcomes, and 12.5% reported on psychometric testing of the instruments. Nineteen studies (12.5%) reported psychometric properties, but none evaluated all nine properties recommended by COSMIN. Conclusion The use of generic HRQoL instruments in studies of children and adolescents in LMICs, mainly with PedsQL, has increased in recent years, though almost half of the studies identified were carried out in only two countries. Despite their growing use, gaps remain in population coverage, generation of evidence on their psychometric performance in LMICs, and the geographic distribution of research in LMICs using generic HRQoL instruments. Scoping review registration: The protocol was submitted to Open Science Framework on 24 January 2025. Registration DOI: https://doi.org/10.17605/OSF.IO/MVG62