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.

Disability Weights Estimates From India in 2018: Measurements From Community Members From Two Distinct States of India.

Background: India is undergoing a rapid demographic and epidemiologic transition. Thus demanding prioritization of diseases based on burden estimation is befitting our cultural diversity. Disability weights (DWs) by Global burden of disease (GBD) studies may not be representative. Hence, a study was conducted to estimate state-specific disability weights to capture the community health perceptions that included urban-rural settings as well as different socio-economic and literacy levels. Methods: A total of 2,055 community members (participants) from two distinct states of India, Odisha and Telangana, were interviewed to assign disability weights to the selected 14 health states based on the state burden and relevance. Each health state was described to the participants using pictorial representations of the health states and valuated using visual analog scale and card sort methods. Results: We noted that DWs in Odisha ranged from 0.32 (0.30-0.34) for upper limb fracture due to road traffic accident (least severe) to 0.90 (0.88-0.93) for breast cancer (most severe) among the 14 health states. While, in Telangana, diarrhea was considered least severe [DW = 0.22 (0.19-0.24)] and breast cancer remained most severe [DW = 0.85 (0.83-0.88)] as in Odisha. Marked difference in the DWs for other health states was also seen. Further, on comparison of community weights with GBD weights using Spearman correlation, we observed a low correlation (ρ = 0.104). Conclusion: Our study provides community-based findings that show how participants valued noncommunicable diseases higher than short-term ailments or infectious diseases. Additionally, the low correlation between GBD also suggests the need for local disability weights rather than universal acceptance. We therefore recommend that decisions in policy-making, especially for resource allocation and priority setting, need to be based not only on expert opinion but also include community in accordance with high scientific standards.

Describing the Development of a Health State Valuation Protocol to Obtain Community-Derived Disability Weights.

For the prioritization of the allocation of national resources, estimating the burden of disease studies play a critical role. Hence the first Global Burden of Disease study conducted in the 1990s was done for this particular estimation. By the means of introducing disability-adjusted life year (DALY) metric, the burden of various diseases was calculated using disability weights (DWs)-a component of DALY. DWs are values that capture individuals' perception regarding the severity of diseases that involve valuation tools and health state descriptions. Various studies have been conducted over the past few decades to evaluate health states and derive disease-specific disability weights using Person-Trade off, Time-trade off, etc. However, use of these complex and cognitively demanding methods has been carried out in developed countries where the bulk of the populace is more educated. Few attempts have been made in low- and middle-income countries such as India, where not only the majority is less educated but also the social construction of diseases and health conditions are diverse. Therefore, due to the absence of methodological protocols of health state valuations for application at the community-level in the developing world, we attempted to systematically describe the procedure that can be used universally and cross-culturally for various health states. We began with the tentative selection of health states and health states valuation methods by conducting a meticulous literature review, followed by community exploration and medical consultations. This led to developing vignettes (clinical description) and 6D5L pictorial narrations (functional status description). Two field tests for checking the usability and refinement of the tools was done. Final consultation by an expert panel comprising of medical and non-medical professionals was held/conducted to finalize the health state labels and functional status profiles of each health state. The methodical approach provides a robust and thorough procedure for guiding researchers to implement health state valuation studies at community level.