POS1474-HPR PERSONAL EXPERIENCES WITH DIAGNOSTIC DELAY AMONG AXIAL SPONDYLOARTHRITIS PATIENTS – A QUALITATIVE STUDY
Authors: C. Dubé, K. Lapane, K. Ferrucci, A. Beccia, S. Khan, E. Yi, J. Kay, K. A. Kuhn, A. Ogdie, S. H. Liu
Journal: Annals of the Rheumatic Diseases (2021)

Background: The estimated prevalence of axial Spondyloarthritis (axSpA) in the U.S. is 0.4 to 1.3 percent. Undiagnosed axSpA patients suffer from symptoms on average 7 to 10 years, which can also contribute to psychological suffering and healthcare burden due to the prolonged search for diagnosis and treatment. Objectives: To explore the experiences of diagnostic delay of axSpA patients as part of the SpondyloArthritis Screening and Early Detection (SpA-SED) Study. Methods: We conducted exploratory semi-structured patient focus groups. English-speaking participants ≥18 years of age with a rheumatologist-verified clinical diagnosis of axSpA were recruited from three rheumatology practices in Massachusetts, Colorado, and Pennsylvania. Six focus groups were conducted with 26 total participants (16 men, 10 women, age range 21-76 years). Discussions ranged from 1.33 to 2.13 hours. Verbatim transcripts were deidentified, cleaned and coded using NVivo qualitative software. A coding list was generated and summary themes were constructed. Results: Participants described meandering and frustrating journeys in search of a diagnosis. When doctors gave up, it was experienced by patients as profoundly negative. Intermittent axSpA symptoms confused some physicians and caused some patients to either delay seeking medical care (e.g., sporadic flare-up) or use dramatic language to convey the magnitude of the impact on their symptoms. Patients explained their experiences where physicians presumed that patients were trying to obtain narcotics or were “imagining/exaggerating” symptoms. Early symptom stories fell into five areas of importance for patients: pain, stiffness and lack of mobility, impact on sleep, impact on daily life, and changes with weather. Tenacity on the part of the patient and/or their family, patient research and confidence to challenge their physicians were important. Self-advocacy was challenging but necessary and particularly difficult when patients were sick. During the typically lengthy time that participants waited to be diagnosed, they experienced frustration and mental suffering due to lack of answers and/or not being heard, believed, or taken seriously. Some participants described the fatigue they experienced after trying without success to obtain a diagnosis or receive treatment. Early administration of a definitive diagnostic test or screening tools for axSpA would have alleviated both physical and emotional suffering for these participants. Conclusion: Overall, participants expressed satisfaction with physicians who sought to understand them and believed them, took them seriously, and did not give up even with long delays. Patients with axSpA described significant suffering prior to diagnosis which could have been prevented and treated. Further research is needed with axSpA patients who are early in their diagnostic journey to determine best practices to support patients and reduce diagnostic delay. Disclosure of Interests: Catherine Dubé Grant/research support from: Novartis, as personnel on such studies, Kate Lapane: None declared, Katarina Ferrucci: None declared, Ariel Beccia: None declared, Sara Khan: None declared, Esther Yi Employee of: Novartis Pharmaceuticals, Jonathan Kay Consultant of: AbbVie, Inc.; Boehringer Ingelheim GmbH; Celltrion Healthcare Co. Ltd.; Jubilant Radiopharma; Merck &amp; Co.,Inc.; Pfizer Inc.; Samsung Bioepis; Sandoz Inc.; Scipher Medicine; UCB, Inc., Grant/research support from: (paid to UMass Medical School) Gilead Sciences Inc.; Novartis Pharmaceuticals Corp.; Pfizer Inc., Kristine A. Kuhn Consultant of: UCB, Eli Lilly, Novartis, Grant/research support from: Pfizer, Alexis Ogdie Consultant of: Abbvie, Amgen, BMS, Celgene, Corrona, Gilead, Janssen, Lilly, Novartis, Pfizer, UCB, Grant/research support from: Pfizer to Penn, Novartis to Penn, Amgen to Forward/NDB, Shao-Hsien Liu Grant/research support from: Novartis