Abstract
Background: Health-related quality of life (HRQoL) measures are widely used in research and clinical practice; however, their application among children and adolescents in low- and middle-income countries (LMICs), where most of the world's youth reside remains underexplored. This scoping review aims to identify generic HRQoL instruments used in LMICs and describe their applications and reported psychometric properties.
Method: Guided by Arksey and O'Malley's framework, a search for peer-reviewed papers published between 2000 and 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 individuals aged 0-19 years in LMICs.
Results: A total of 152 papers originating from 22 (of 75) LMICs were included. Nearly half of the papers were from 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. Only 11 (7.2%) papers reported use of the instruments in the general population, and only one generated population norms. Very few studies 2 (1.3%) included children ≤ 4 years. One-third (34.9%) of the studies included both self- and proxy-reported HRQoL data. Most of the instruments were used for general health assessment (77.6%); only 9.9% of studies evaluated treatment or intervention outcomes, and 12.5% were psychometric studies. None of the psychometric studies assessed all nine measurement 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, psychometric evidence, 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.