SAT0218 PATIENTS’ JOURNEY THROUGH GIANT CELL ARTERITIS: A QUALITATIVE STUDY

Abstract

Background Giant cell arteritis (GCA) is the most common form of vasculitis. Diagnosis is difficult due to multiple presenting symptoms: headache, jaw and limb claudication, myalgia and visual impairment. Access to care may be delayed because often multiple providers are involved in the diagnosis of GCA and disease management. Treatment with high-dose glucocorticoids (GCs) can relieve symptoms and prevent vision loss, but GC-related adverse events are common; GCA often relapses once GCs are tapered. Objectives To understand the GCA patient care pathway and unmet needs in GCA through in-depth patient interviews. Methods US patients with GCA were recruited through outreach to physicians and The Vasculitis Foundation, which used email newsletters and social media to recruit ≈ 50% of participating patients. Extensive individual interviews with patients were conducted by qualitative researchers by phone or in person and explored patients’ perspectives and experiences from the onset of GCA symptoms to diagnosis and disease management. Patients were asked open-ended questions and encouraged to share their stories to provide additional insights into the patient journey and their individual perspectives. The qualitative data collected were analyzed using human-centered design methodology, including patient typologies (personas: optimist, fearful, stoic or despondent), forced temporal zoom (journey maps), forced semantic zoom (stakeholder system mapping) and affinity mapping for pattern recognition of unmet needs. Results A total of 28 patients were interviewed; 23 (82%) were women and mean age was 69 years (Table). The number of patients in each persona category is shown in the Table. Stoic and optimist personas had medium to high levels of self-advocacy and a positive/engaged attitude about their condition, while fearful and despondent personas had low levels of self-advocacy with disengaged/negative attitudes toward their condition. Patients often ascribed their milder GCA symptoms to causes such as stress and did not consult a physician until they developed moderate to severe symptoms, such as persistent headache, jaw pain or visual disturbances. Patients with existing inflammatory disorders were less likely to share symptoms of GCA unless the symptoms substantially worsened. In most cases, physicians diagnosed GCA based on abnormal erythrocyte sedimentation rate, often followed by a temporal artery biopsy. After diagnosis of GCA, all patients received GCs with little information on the chronicity of GCA. Few patients were offered treatment alternatives to GCs. Overall, patients managed their GCA independently, with moderate support from friends or family, and sought to balance relief of GCA symptoms with the adverse effects of GCs. Patients concentrated on tapering and discontinuing GCs, with less concern about relapse. Furthermore, patients who were most uncomfortable with the adverse effects of GCs often waited until their GCA symptoms became debilitating before telling their physician. Almost all patients reported searching for a support group after the diagnosis. Conclusion Patients with GCA experience adverse effects from GCs and remain focused on reducing their GC dose. For those with inflammatory comorbidities, diagnosis of GCA is another burden in a debilitating journey that results in a sense of disempowerment and resignation toward their condition and paucity of therapeutic options. Patients with GCA want a clearer understanding of treatment options and need access to support groups. Patients’ attitudes and self-advocacy vary depending on their personas; recognizing these personas may help HCPs coordinate patient care. Increased awareness of GCA among patients and HCPs may accelerate the path to diagnosis and treatment, and emerging therapies may help reduce GC burden. Acknowledgement This study was funded by Genentech, Inc. Disclosure of Interests Jennie H. Best Shareholder of: Genentech, Employee of: Genentech, Ivan Nunez Employee of: Azul Seven, Kristina Woodburn Employee of: Azul Seven, Abby Breyer Employee of: Azul Seven, Mike Conway Employee of: Azul Seven, Margaret Michalska Employee of: Genentech, Inc.