DS18 Living with dermatofibrosarcoma protuberans: patients’ perspectives on health-related quality-of-life measures

Abstract Dermatofibrosarcoma protuberans (DFSP) is a rare, indolent, locally invasive soft-tissue sarcoma with low tumour-related mortality. Despite its favourable prognosis, patients with DFSP may experience a high degree of surgical-related morbidity. This, coupled with diagnostic delay, risk of local recurrence and paucity of patient-accessible information, has the potential to impact patients’ health-related quality of life. The primary aim of this study was to assess the lived experiences of patients with DFSP. After confirmation that no formal ethics application was needed, members of a DFSP Facebook support group known as ‘The Home of the Unicorns’ were asked to complete a brief anonymized online questionnaire using a Microsoft Forms e-survey over a 2-week period. From 1000 active users, a total of 253 responses were collected (estimated 25% response rate). Of 253 responders, 197 (78%) reported one or more functional symptoms including numbness or tingling (150, 76%), pain (115, 58%), reduced movement (56, 28%) weakness (49, 24%) and/or stiffness (45, 23%). Overall, 185 responders (73%) reported one or more symptoms of emotional stress, including low mood (99, 53%), excessive worry (127, 69%), low self-esteem (70, 38%), distress about physical appearance (109, 59%), sleep disturbance (91, 49%) and/or difficulties with relationships (40, 22%). Most responders (161, 63%) thought about their DFSP on a daily or weekly basis. The main sources of worry for these participants included worry about local recurrence or metastasis (219, 92%) and/or getting a second DFSP (165, 69%). Some participants had adopted lifestyle changes since their diagnosis, including sun avoidance (106, 42%), healthy eating (63, 39%), regular exercise (58, 36%) and mindfulness (49, 30%). Looking back, 187 responders (74%) felt that having DFSP had resulted in positive changes, including helping them realize what’s important in life (114, 61%), making life feel more precious to them (102, 55%), helping them prioritize relationships (91, 49%) and/or helping them feel stronger (97, 52%). Despite the limitations of Facebook support groups, 204 members (81%) have found the group helpful in coping with their diagnosis, and 232 (92%) found the group informative. However, 49 members (19%) have found the information and images published in the group distressing. To our knowledge, this is the only study looking at health-related quality-of-life measures exclusively in patients with DFSP. Limitations of this study include responder bias and its retrospective design. We hope that our findings raise awareness about the impact DFSP can have on an individual and we suggest that it demonstrates a need for holistic care.