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Delay in seeking medical help in patients with rheumatoid arthritis in India: a qualitative study

Delay in seeking medical help in patients with rheumatoid arthritis in India: a qualitative study
Delay in seeking medical help in patients with rheumatoid arthritis in India: a qualitative study
Background
Rheumatoid arthritis (RA) is an autoimmune disease with varied articular and extra‐articular manifestations. In developing countries such as India patients with RA often delay seeking medical advice which may impact prognosis and disease burden.

Aim
To explore perceptions and experiences of patients living in India in seeking medical help for their RA symptoms.

Methods
Clinician‐diagnosed RA participants from different socioeconomic backgrounds were interviewed using a semi‐structured topic guide. Participants were purposively selected and interviewed following an iterative approach. All interviews were recorded and transcribed by an independent company and analyzed using a thematic framework. Findings were reported in accordance with consolidated criteria for reporting qualitative research guidelines.

Results
Twenty participants (13 male, 7 female) with median age 40 years (35.7‐46.5) were recruited. Three overarching themes demonstrating participants’ experiences and reasons for delay in seeking medical help were identified. (1) “Symptoms perspectives and delay in participants’ journey” narrated participants’ experiences of having RA symptoms, how these were perceived, rationalized and led to delay. (2) “Participants’ experience of the healthcare system” illustrated delay in referral, reaching diagnosis and treatment initiation highlighting their experiences with the health system. (3) “Recommendations for improving care” where participants made recommendations for reducing the delay at local and national levels.

Conclusion
This is the first qualitative study which explored perceptions and experiences of RA patients in India resulting in delay. Improved provision of rheumatology care, effective referral system and greater involvement of government at local and national levels are needed to improve the delay in seeking medical help for Indian patients.
India, delay, healthcare, rheumatoid arthritis, symptoms perspectives
1756-1841
1707-1718
Jain, Avinash
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Aggarwal, Amita
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Adams, Joanna
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Jordan, Rachel E.
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Sadhra, Steven
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Dubey, Shirish
5c8342cc-9087-42ff-ac90-05140557c79a
Allen, Kerry
31091f0d-1be9-4c3d-9a6a-56d45e56516a
Kumar, Kanta
fccdd642-143f-40ba-8b18-9dba64396be0
Jain, Avinash
4afb0140-9e3c-4ad1-bd3e-1b1808a7af21
Aggarwal, Amita
d9ce48ff-7ec5-47ae-b58d-92712776b853
Adams, Joanna
6e38b8bb-9467-4585-86e4-14062b02bcba
Jordan, Rachel E.
1a70964c-42a2-4132-8f79-7485e14e839b
Sadhra, Steven
17ddb354-bc50-43a2-80e9-679f183707a0
Dubey, Shirish
5c8342cc-9087-42ff-ac90-05140557c79a
Allen, Kerry
31091f0d-1be9-4c3d-9a6a-56d45e56516a
Kumar, Kanta
fccdd642-143f-40ba-8b18-9dba64396be0

Jain, Avinash, Aggarwal, Amita, Adams, Joanna, Jordan, Rachel E., Sadhra, Steven, Dubey, Shirish, Allen, Kerry and Kumar, Kanta (2020) Delay in seeking medical help in patients with rheumatoid arthritis in India: a qualitative study. International Journal of Rheumatic Diseases, 23 (12), 1707-1718. (doi:10.1111/1756-185X.14001).

Record type: Article

Abstract

Background
Rheumatoid arthritis (RA) is an autoimmune disease with varied articular and extra‐articular manifestations. In developing countries such as India patients with RA often delay seeking medical advice which may impact prognosis and disease burden.

Aim
To explore perceptions and experiences of patients living in India in seeking medical help for their RA symptoms.

Methods
Clinician‐diagnosed RA participants from different socioeconomic backgrounds were interviewed using a semi‐structured topic guide. Participants were purposively selected and interviewed following an iterative approach. All interviews were recorded and transcribed by an independent company and analyzed using a thematic framework. Findings were reported in accordance with consolidated criteria for reporting qualitative research guidelines.

Results
Twenty participants (13 male, 7 female) with median age 40 years (35.7‐46.5) were recruited. Three overarching themes demonstrating participants’ experiences and reasons for delay in seeking medical help were identified. (1) “Symptoms perspectives and delay in participants’ journey” narrated participants’ experiences of having RA symptoms, how these were perceived, rationalized and led to delay. (2) “Participants’ experience of the healthcare system” illustrated delay in referral, reaching diagnosis and treatment initiation highlighting their experiences with the health system. (3) “Recommendations for improving care” where participants made recommendations for reducing the delay at local and national levels.

Conclusion
This is the first qualitative study which explored perceptions and experiences of RA patients in India resulting in delay. Improved provision of rheumatology care, effective referral system and greater involvement of government at local and national levels are needed to improve the delay in seeking medical help for Indian patients.

Text
Delay in seeking medical help in patients with Rheumatoid Arthritis in India: a qualitative study - Accepted Manuscript
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More information

Accepted/In Press date: 21 September 2020
e-pub ahead of print date: 17 October 2020
Published date: December 2020
Keywords: India, delay, healthcare, rheumatoid arthritis, symptoms perspectives

Identifiers

Local EPrints ID: 444624
URI: http://eprints.soton.ac.uk/id/eprint/444624
ISSN: 1756-1841
PURE UUID: c412c8b9-ccef-4a0d-a476-8279b55a6db2
ORCID for Joanna Adams: ORCID iD orcid.org/0000-0003-1765-7060

Catalogue record

Date deposited: 27 Oct 2020 19:56
Last modified: 26 Nov 2021 06:01

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Contributors

Author: Avinash Jain
Author: Amita Aggarwal
Author: Joanna Adams ORCID iD
Author: Rachel E. Jordan
Author: Steven Sadhra
Author: Shirish Dubey
Author: Kerry Allen
Author: Kanta Kumar

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