Markus Reitmajer, Elisabeth Livingstone, Norbert Schäffeler, Sevil Börger, Rainer Rompel, Susanne Dugas-Breit, Jessica C Hassel, Dirk Debus, Rudolf Herbst, Anja Gesierich, Frank Meiss, Markus V Heppt, Marina Wanner, Evelyn Dabrowski, Christoffer Gebhardt, Konstantin Drexler, Sebastian Haferkamp, Friedegund Meier, Wiebke K Peitsch, Georg Lodde, Lea Jessica Albrecht, Lisa Zimmer, Andrea Forschner
A substantial proportion of LTS face persistent physical, psychosocial, and financial challenges. To address these unmet needs, the implementation of survivorship programs with validated screening and integrated vocational, financial, and psychological counseling is essential.
BACKGROUND: Since the approval of immune checkpoint inhibitors (ICI) and targeted therapies (TT), the number of long-term survivors of metastatic melanoma (LTS) has increased. However, data on their complaints and needs remain limited.
OBJECTIVE: To examine the prevalence and spectrum of treatment-related adverse events (TRAEs), psycho-oncological distress, and socioeconomic outcomes in long-term survivors (LTS), to evaluate their association with elevated distress levels, and to determine whether these findings support the implementation of dedicated survivorship programmes.
METHODS: Between April 15, 2024, and May 9, 2025. an online survey was conducted among LTS (overall survival >5 years after stage IV diagnosis) to assess potential TRAEs, financial burden, and psychosocial distress. Validated tools and disease-specific questions were used. All skin cancer centers within the German Dermatologic Cooperative Oncology Group (DeCOG) and patient support groups were invited.
RESULTS: A total of 296 LTS from 40 centers in Austria, Germany, and Switzerland participated; approximately 30% had brain metastases. Nearly 80% of the patients had received ICI at any time point, and approximately 27% had received TT. Around 40% reported distress levels above the threshold and persistent TRAEs, respectively. Among patients with prior radiotherapy or surgery, about 30% reported persistent TRAEs for either treatment. Cognitive deficits after cerebral radiotherapy and lymph edema after surgery were the most frequently reported complaints. Persistent TRAEs due to systemic anti-tumor therapy were significantly associated with elevated distress values (OR = 1.99, p = 0.025). About 23% of the patients reported financial constraints. At the time of the survey, 62% of patients aged ≤65 years were still working, half with reduced hours and 44% of retirees had retired early due to melanoma.
CONCLUSION: A substantial proportion of LTS face persistent physical, psychosocial, and financial challenges. To address these unmet needs, the implementation of survivorship programs with validated screening and integrated vocational, financial, and psychological counseling is essential.