The Emotional Impact of Pyoderma Gangrenosum (PG): Real-world Experience of the PG Patient Journey

Introduction: PG is a rare, painful, ulcerative, neutrophilic disorder, which significantly impacts patients’ quality of life. However, data describing the emotional challenges faced by patients and their caregivers are limited. We explored the PG patient journey to highlight the emotional and psychosocial experiences at multiple disease stages and their support needs. Methods: Between August and September 2024, adults with PG and their caregivers were recruited; PG diagnosis was confirmed in a pre-screening questionnaire. Participants completed tasks on an online platform, followed by either an online 60-minute individual interview or a 90-minute interview with 2 patients conducted by an independent market research agency. Results: In total, 22 patients with PG and 4 caregivers from the US, China, Japan and France participated; 74% of patients with PG were female, 78% were aged 26–55 years, 70% were diagnosed with PG 1–5 years ago, 42% had comorbidities and 91% had moderate-to-severe PG. Participants reported substantial emotional impact of PG on daily life throughout their journey. At the onset of symptoms, PG presented as a ‘small bump’ that rapidly progressed into an ulcer, causing excruciating pain. Patients reported feeling worried, anxious, depressed, and isolated as symptoms progressed. At presentation, patients reported experiencing high levels of distress due to the size of the ulcer, severe pain, immobilization and difficulty performing daily tasks, which forces them to change their routines and wardrobe. PG also affects patients’ ability to socialize and undertake previously loved hobbies, impacting their relationships with family and friends. Comorbidities may result in patients delaying seeing a dermatologist. Regarding diagnosis, patients commonly reported misdiagnosis due to HCPs’ unfamiliarity with PG. Patients reported feeling helpless and afraid, and struggling with uncertainty due to feelings of frustration, mistrust, and neglect over the lack of a clear explanation of the disease by HCPs. Regarding treatment, PG can cause patients to stop working, leading to financial issues, which may impact treatment options. Patients conveyed feelings of isolation and pessimism when treatment options did not help relieve pain and symptoms, with emotions fluctuating due to the uncertainty of treatment success and impact on quality of life. Throughout management, pain continued until wound closure, which can be a lengthy process, causing distress. Patients also reported anxiety and a fear of the risk of relapse. Conclusion: This study demonstrates the substantial emotional impact of PG on patients and caregivers and highlights challenges faced by patients living with PG throughout their journey. Addressing diagnosis delay or misdiagnosis of PG by improving disease education and offering mental health and peer support could empower patients and improve their emotional and clinical outcomes. Funding: This study was supported and funded by Boehringer Ingelheim and LEO Pharma A/S.