Background: Chronic diseases are a major contributor to mortality, morbidity, and socio-economic costs globally, including in India. Quality of life (QoL) is an important patient-centered outcome for chronic disease. Measurement properties of tools for assessing QOL in the Indian context have not been assessed systematically.
Methods: A scoping review was conducted, and four major electronic databases were searched. Screening was conducted by at least two independent reviewers, with a third person acting as an arbiter. Data from the retrieved full texts were extracted by one reviewer, with a sample verified by another reviewer to reduce any data extraction errors. A narrative synthesis was done with a focus on measurement properties of tools, including but not limited to internal consistency, inter-rater reliability, test-retest reliability, validity, and acceptability.
Results: Out of 6706 records retrieved, a total of 37 studies describing 34 tools (both generic and disease-specific tools) for 16 chronic conditions were included. Most of the studies were cross-sectional (n = 23). Overall, most tools had acceptable internal consistency (Cronbach's alpha value ≥0.70) and good-to-excellent test-retest reliability (intra-class correlation coefficient = 0.75-0.9), but there was variability in acceptability. In terms of acceptability, seven tools were positively assessed (meeting psychometric property requirements), but all except the World Health Organization QoL tool were disease specific. Many tools have also been tested for local context, and many translated and tested in one or few languages only, thus limiting their usability across the nation. Women were underrepresented in many studies, and tools were not evaluated in other genders. Generalizability to tribal people is also limited.
Conclusion: The scoping review provides a summary of all QOL assessment tools for people with chronic diseases in India. It supports future researchers to make informed decisions for choosing tools. The study highlights the need for more research to develop QOL tools which are contextually applicable and enables the comparability across diseases, people, and regions within India and potentially in the South Asian region.
Keywords: Chronic diseases; India; health-related quality of life; psychometric properties; quality of life; tools.