Generic patient‐reported outcomes in child health research: a review of conceptual content using World Health Organization definitions

Abstract

AIM Our aims were to (1) describe the conceptual basis of popular generic instruments according to World Health Organization (WHO) definitions of functioning, disability, and health (FDH), and quality of life (QOL) with health-related quality of life (HRQOL) as a subcomponent of QOL; (2) map the instruments to the International Classification of Functioning, Disability and Health (ICF); and (3) provide information on how the analyzed instruments were used in the literature. This should enable users to make valid choices about which instruments have the desired content for a specific context or purpose.METHOD Child health-based literature over a 5-year period was reviewed to find research employing health status and QOL ⁄ HRQOL instruments. WHO definitions of FDH and QOL were applied to each item of the 15 most used instruments to differentiate measures of FDH and QOL ⁄ HRQOL. The ICF was used to describe the health and health-related content (if any) in those instruments. Additional aspects of instrument use were extracted from these articles. RESULTSMany instruments that were used to measure QOL ⁄ HRQOL did not reflect WHO definitions of QOL. The ICF domains within instruments were highly variable with respect to whether body functions, activities and participation, or environment were emphasized.INTERPRETATION There is inconsistency among researchers about how to measure HRQOL and QOL. Moreover, when an ICF content analysis is applied, there is variability among instruments in the health components included and emphasized. Reviewing content is important for matching instruments to their intended purpose.The effectiveness of health programmes and interventions has traditionally been decided by clinicians, administrators, researchers, and policy makers with little input from patients. [1][2][3][4] With more children living with chronic, episodic, or progressive health conditions, 5,6 health professionals need to assess the impact of care on day-to-day life, rather than restrict measurement to biomedical issues, such as morbidities, that might not resolve. 7 In parallel, health care resources are becoming an increasingly precious commodity around the world and difficult decisions need to be made about the focus and allocation of health services. 8 The impact of these services as reported by children and their families can provide insight that can help with these difficult decisions.Scaled questionnaires that assess health, health-related quality of life (HRQOL), and quality of life (QOL) are valuable tools for capturing child and parent experiences. When these validated questionnaires are administered directly to children or their families without clinicians, they are called patientreported outcomes (PROs). 9 Patient-reported outcome instruments are essential patient appraisal tools, but they are often developed and implemented without a firm conceptual basis or a clear definition of what they are intended to measure. Many PROs were developed before there was clarity in the literature on what constituted function...

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