Understanding community perception and disability weights – A qualitative exploration of reasons associated with values in two states of India

BACKGROUND: Health state valuation attempts to evaluate health states based on the perception of individuals. The values are used to derive disability weights (DWs) —an important metric for estimation of disability-adjusted life years and thereby calculation of the burden of diseases. Several studies have calculated DWs using different methods of valuation, however, very few have attempted to explore the underlying cause for assigning values to different health states. This study aims to document the perceptions, preferences, and social context in assigning DWs to given health states. METHODS: A total of 42 community members and 21 service providers (from public and private sectors) across urban and rural Odisha and Telangana were interviewed between July to September 2018. A face-to-face in-depth interview and a rank ordering technique through card sort exercise was employed to explore reasons and perceptions of individuals in the context of health states using the thematic framework approach. FINDINGS: Six themes emerged through analysis: awareness of the health state, nature of the disease, disease consequences, treatment-related issues, social implications, and case burden. Each theme captured an individual’s reason for valuing one health state as different from the other, with differences and/or similarities between community members and service providers. CONCLUSION: Our study provides a comprehensive comparison between contrasting groups of individuals, thereby suggesting mere acceptance of ‘experts’ reasoning may not always suffice. Further research studies in the future need to be conducted for a better insight into the health perspective of a culturally diverse community. It can also help estimate the burden of disease for decision making and resource allocation in developing countries.