Humanistic burden of melanoma recurrence after definitive surgical resection: Patient and caregiver perspectives from the United States.

Abstract

424 Background: Melanoma after definitive surgical resection has a high risk of recurrence; adding targeted or immunotherapy reduces, but does not eliminate, this risk. This qualitative study aimed to describe the humanistic burden of melanoma recurrence from the patients’ and caregivers’ perspectives in the US, given the limited real-world data. Methods: Semi-structured qualitative interviews were conducted via teleconference with resected stage IIB/C–III cutaneous melanoma patients with recurrence and unpaid caregivers of such patients. Participants were recruited independently (not as dyads). Interviews explored the impact of recurrence on various aspects of their lives. Transcripts were anonymized and analyzed using thematic analysis (NVivo). Results: We interviewed 17 patients with recurrence and 11 caregivers; distant recurrence (DR) was reported by 8 patients and 2 caregivers. Recurrence (especially DR) adversely affected patient quality of life (QOL) across emotional, physical, functional, social, financial, and work domains. Common patient-reported impacts included emotional burden (anxiety, grief, hopelessness, anger), fear of progression/death, impaired daily functioning, social withdrawal, cosmetic concerns, financial burden, and employment impact. Caregivers described parallel emotional and practical burdens, including caregiving strain, anxiety, work disruption, high costs, and effects on their own QOL. Conclusions: Based on the feedback, melanoma recurrence, especially distant recurrence, was associated with substantial humanistic burden, including emotional, physical, functional, social, and financial impacts for both patients and caregivers. These findings highlight the importance of recurrence prevention and the need for novel interventions to further reduce recurrence risk and humanistic burden. Impact of melanoma recurrence on patients: Select key themes and phrases. Theme Phrases Emotional burden “I get very angry for no reason sometimes and nervous.” Fear of disease progression “Is there something inside of me growing? Is this going to kill me? Am I going to see my kid graduate from high school?” Physical symptom burden “In my brain, it (arm) is supposed to be back like it used to be, and it ain’t. I have so much pain.” Impaired daily functioning “That's been a struggle trying to keep up with typical daily living, like doing laundry and cooking meals and washing dishes." Financial burden “Yes, it’s copays, gas, food. When I would leave, I knew automatically it’s $100 every time I go…2-3 times/week.” Employment impact “..we made the decision that it was better for my health to stay part-time.”