Abstract
ABSTRACT Background: Depending on a country’s diagnostic infrastructure, patients and providers play different roles in ensuring that correct and timely diagnosis is made. However, little is known about the work done by patients in accessing diagnostic services and completing the ‘test and treat’ loop. Objective: To address this knowledge gap, we traced the diagnostic journeys of patients with tuberculosis, diabetes, hypertension and typhoid, and examined the work they had to do to arrive at a diagnosis. Methods: This paper draws on a qualitative study, which included 78 semi-structured interviews and 13 focus group discussions with patients, public and private healthcare providers, community health workers, test manufacturers, laboratory technicians, program managers and policymakers. Data were collected between January and June 2013 in rural and urban Karnataka, South India, as part of a larger project on barriers to point-of-care testing. We reconstructed patient diagnostic processes retrospectively and analyzed emerging themes and patterns. Results: The journey to access diagnostic services requires a high level of involvement and immense work from patients and/or their caretakers. This process entails overcoming cost and distance, negotiating social relations, continuously making sense of their illness and diagnosis, producing and transporting samples, dealing with the social consequences of diagnosis, and returning results to the treating provider. The quality and content of interactions with providers were crucial for completion of test and treat loops. If the tasks became overwhelming, patients opted out, delayed being tested, switched providers and/or reverted to self-testing or self-treatment practices. Conclusion: Our study demonstrated how difficult it can be for patients to complete diagnostic journeys and how the health system works as far as diagnostics are concerned. If new point-of-care tests are to be implemented successfully, policymakers, program officers and test developers need to find ways to ease patient navigation through diagnostic services.
Highlights
Depending on a country’s diagnostic infrastructure, patients and providers play different roles in ensuring that correct and timely diagnosis is made
The results presented in this paper are part of a larger research project that explored the barriers to pointof-care testing in India, reported previously [1]
Community health workers (CHWs) are employed by a non-governmental organization (NGO) (n = 6) and link workers employed by government (n = 7) carry out outreach work to educate the community about symptoms for a range of basic illnesses and refer them to appropriate health facilities
Summary
Depending on a country’s diagnostic infrastructure, patients and providers play different roles in ensuring that correct and timely diagnosis is made. Depending on a country’s specific diagnostic set-up, patients and providers play different roles in ensuring that correct and timely diagnosis is reached and treatment is initiated. India has a complex, fragmented healthcare delivery system, and in our previous work, we have shown that the onus is usually on the patient to ensure that test and treat cycles or diagnostic processes are completed [1,2]. This follow-up paper traces the diagnostic journeys of patients in South India and examines the work they have to do to arrive at a diagnosis. Medical diagnosis is a composite activity and deserves consideration
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