Background: Axial Spondyloarthritis (axSpA) is a common chronic inflammatory rheumatic disease primarily affecting the axial skeleton, and potentially other joints and organs [1]. Considerable time still elapses between the onset of initial symptoms of axSpA and the final diagnosis [2]. The journey to diagnosis and accurate management of axSpA is often complex and multifaceted [3], affecting not only the patients but also their relatives. Objectives: This study aims to explore the patient journey in axSpA, focusing on the experiences and challenges faced by both patients and their relatives. It seeks to identify areas where the healthcare systems can improve in providing support and care. Methods: This study includes semi-structured telephone interviews with axSpA patients and relatives. The participants were contacted with an advert in the magazine of German Association for Morbus Bechterew (DVMB). Interview data was analyzed using structured qualitative content analysis. Results: The patient journey is categorized into four phases: pre-diagnosis, diagnosis, post-diagnosis, and current care. In the pre-diagnosis phase, patients and relatives experience confusion, psychological distress, and frustration due to non-specific symptoms and misdiagnosis. "That was of course extremely stressful psychologically." (6_P, pos. 63) The diagnosis phase brings mixed feelings of relief and emotional upheaval, with many reporting that their diagnosis was a coincidence. "And the diagnosis was basically a coincidence, I would call it now." (3_R, pos. 29) The post-diagnosis phase is marked by a reduction in doctor visits and a focus on coping strategies, highlighting the importance of comprehensive medical advice and education. "With the diagnosis, the race to the doctor also stopped." (9_P, pos. 117) The current care phase emphasizes the role of specialist care, particularly rheumatologists, and the challenges in maintaining consistent care. "And my wife has been very, very lucky so far, because the rheumatologist is very, very good." (3_R, Pos. 35) Throughout all phases, the strong need for better public awareness, high-quality education, psychological support, and clear communication about the disease's prognosis is evident. Conclusion: The study emphasises that the journey for axSpA patients and their families is complex, stressful and often dependent on fortunate circumstances. There is an urgent need for a structured approach to identify and treat people with axSpA as quickly as possible. Beyond medical care, there is a need for analogue and digital psychological support services to improve care and quality of life for both axSpA patients and their families on the patient journey. REFERENCES: [1] Sieper J, Poddubnyy D. Axial spondyloarthritis. Lancet. 2017;390(10089):73-84. doi:10.1016/S0140-6736(16)31591-4. [2] Fuchs F, Morf H, Mohn J, et al. Diagnostic delay stages and pre-diagnostic treatment in patients with suspected rheumatic diseases before special care consultation: results of a multicenter-based study. Rheumatol Int. 2023;43(3):495-502. doi:10.1007/s00296-022-05223-z. [3] Otón T, Sastre C, Carmona L. The journey of the non-radiographic axial spondyloarthritis patient: the perspective of professionals and patients. Clin Rheumatol. 2021;40(2):591-600. doi:10.1007/s10067-020-05269-z. Acknowledgements: We declare our gratitude to our interview partners and the Deutsche Vereinigung Morbus Bechterew (DVMB) for their support of the study. This study is partially supported by Novartis Pharma GmbH. Disclosure of Interests: Felix Muehlensiepen Novartis, Novartis, Novartis, Abbvie, Susann May: None declared, Franziska Gabb: None declared, Katharina Boy: None declared, Hannah Labinsky Pfizer, Janssen, Johannes Knitza Abbvie, Novartis, Medac, Sanofi, Amgen, UCB, Consultant of: Abbvie, Novartis, Lilly, Medac, BMS, Sanofi, Amgen, Gilead, UCB, ABATON, GSK, Werfen, Vila Health, Böhringer Ingelheim, Janssen, Galapagos, Chugai, Abbvie, Novartis, Thermo Fisher, UCB, ABATON, Sanofi, DFG, EIT Health, Martin Welcker Abbvie, Actelion, Amgen, Biogen,BMS, Berlin Chemie, Celgene, Galapagos, Gilead, GSK, Hexal, Janssen, Medac, MSD, Mundipharma, Mylan, Novartis, Pfizer, Roche, Sanofi, SOBI, UCB, Abbvie, Actelion, Aescu, Amgen, Cel- gene, Hexal, Janssen, Medac, Novartis, Pfizer, Sanofi, UCB, Novartis, Abbvie.
No takes yet. Share an insight, caveat, or question.
Muehlensiepen et al. (2024) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: