Patient-reported outcome measures in child health: an overview of reviews
2College of Pediatrics, Chongqing Medical University, China
3Department of Cardiac Surgery, Beijing Anzhen Hospital, Capital Medical University, China
Patient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires for measuring patient-reported outcomes (PROs) that assess patients’ physical, emotional, social, functional, overall well-being, disease burden, and health-related quality of life (HRQOL). For children, the appropriate PROMs need to be selected based on their cognitive development as well as their reading ability, vocabulary, and language skills to reflect the children’s situation more accurately. Systematic reviews (SRs) of PROMs are an important way to select the appropriate PROMs. High-quality systematic reviews can provide a comprehensive overview of the PROMs and provide evidence-based recommendations for pediatricians.
Objectives: This study aimed to provide an overview of pediatric PROMs recommended in SRs.
Methods: PubMed, Embase, and Cochrane were searched, using search terms such as “patient reported outcome measures”, “instruments”, “children”, and “systematic review”. SRs of PROMs published in English focusing on the health of children and adolescents were included. Four researchers performed literature screening and data extraction and evaluated the methodological quality of SRs.
Results: A total of 44 SRs of PROMs were eventually included, of which 123 PROMs were recommended. The range of SRs publication years was 2006-2022. A total of 36 conditions were addressed; the most frequent International Classification of Diseases (ICD)-11 category was “Mental, behavioral or neurodevelopmental disorders” (n=9, 20.45%). Of the 123 recommended PROMs, 36 (29.27%) reported the development country, with most from USA (n=17, 13.82%). Forty-two (34.15%) PROMs reported validated language versions, with the EuroQol Five Dimension Youth questionnaire (EQ-5D-Y) reporting the most language versions of more than 50. There were nine categories of contents of each PROM proposed to measure, and the most frequently measured was quality of life (n=37, 30.08%). Most SRs (35, 79.55%) used the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) to evaluate the reliability and validity of PROMs. Two measurement properties were reported greater than 50%: content validity (n=67, 54.47%) and internal consistency (n=65, 52.85%); measurement error (n=10, 8.13%) was reported as the least.
Conclusions: The quality of SRs of pediatric PROMs still needs to be improved, especially in terms of irregular and incomplete reporting of measurement properties. Patient, public, and/or healthcare consumer involvement: None.