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

• Published in: International journal of rheumatic diseases Vol. 23; no. 12; pp. 1707 - 1718
• Main Authors: Jain, Avinash, Aggarwal, Amita, Adams, Jo, Jordan, Rachel E., Sadhra, Steven, Dubey, Shirish, Allen, Kerry, Kumar, Kanta
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.12.2020
• Subjects: Autoimmune diseases; delay; Developing countries; healthcare; India; LDCs; Patients; Qualitative research; Rheumatoid arthritis; symptoms perspectives; India; delay; rheumatoid arthritis; symptoms perspectives; India; healthcare
• ISSN: 1756-1841; 1756-185X
• DOI: 10.1111/1756-185X.14001

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.