A survey of awareness of diagnosis and treatment of rare diseases among healthcare professionals and researchers in India

Vashishta, L and Bapat, P and Bhattacharya, Y and Choudhury, MC and Chirmule, N and D’Costa, S and Jindani, S and Rao, M and Sheth, S (2023) A survey of awareness of diagnosis and treatment of rare diseases among healthcare professionals and researchers in India. In: Journal of Biosciences, 48 (4).

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Abstract

Rare diseases (RDs) are those that affect a small fraction of the total population. In India, where resources are scarce, the healthcare infrastructure and policy framework are focused on mitigating diseases that affect a large number of people. As a result, many cases of RDs remain unreported, undiagnosed, and untreated. To understand the current level of RD awareness among healthcare professionals (HCPs) and researchers, as they are key stakeholders in diagnosis, treatment, policy making, and drug development, we conducted a survey based on identification of an RD, time for diagnosis, treatment options, and relationship with family history and geographic location. The survey was divided into two parts, one for researchers and the other for healthcare professionals, each consisting of 22 questions. We observed that among all our respondents, 31 of researchers and 29 of HCPs did not know the time required for diagnosis of a rare disease they mentioned in the survey. They identified the importance of family history but failed to realize its association with geographic location. The results from the exploratory study can provide information for enabling larger studies to develop recommendations and policies that can improve awareness about RDs in healthcare communities. © 2023, Indian Academy of Sciences.

Item Type:	Journal Article
Publication:	Journal of Biosciences
Publisher:	Springer
Additional Information:	The copyright for this article belongs to the Springer.
Keywords:	disease treatment; drug development; health worker; stakeholder; survey method, India
Department/Centre:	Division of Interdisciplinary Sciences > Centre for Society and Policy (formerly: Centre for Contemporary Studies)
Date Deposited:	01 Dec 2023 09:42
Last Modified:	01 Dec 2023 09:42
URI:	https://eprints.iisc.ac.in/id/eprint/83359

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