- Design
- multicentre cross-sectional online survey using validated instruments
- Population
- 296 survivors more than 5 years after stage IV melanoma, 40 centres in Austria, Germany and Switzerland
- Primary outcome
- persistent treatment-related adverse events, psycho-oncological distress and socioeconomic outcomes
- Effect
- about 40% persistent toxicity and about 40% above distress threshold; toxicity and distress OR 1.99, P = .025; 23% financial constraints
Between April 2024 and May 2025, 296 people surviving more than five years after a stage IV melanoma diagnosis completed an online survey run through 40 skin cancer centres in the German Dermatologic Cooperative Oncology Group and patient support groups, across Austria, Germany and Switzerland. About 30 per cent had had brain metastases; nearly 80 per cent had received a checkpoint inhibitor at some point and about 27 per cent targeted therapy.
About 40 per cent reported persistent treatment-related adverse events, and about 40 per cent scored above the distress threshold. Among those who had had radiotherapy or surgery, about 30 per cent reported persistent effects from each — cognitive deficits after cerebral radiotherapy and lymphoedema after surgery being commonest. Persistent systemic-therapy toxicity was associated with raised distress (OR 1.99, P = .025). About 23 per cent reported financial constraints; 44 per cent of retirees had retired early because of melanoma, and among those aged 65 or under still working, half had reduced their hours.
This is what success looks like now. Checkpoint inhibition converted a rapidly fatal diagnosis into a population of long-term survivors, and the follow-up model did not change with it. The argument for a survivorship pathway — validated distress screening, vocational and financial counselling, and someone responsible for persistent toxicity — is that none of these are being picked up by a surveillance clinic that looks for recurrence and nothing else. In India, where checkpoint inhibitor use in melanoma is still concentrated in a few centres and out-of-pocket cost is the dominant constraint, the financial dimension arrives before the survivorship one does.
- Add a validated distress screen to long-term melanoma follow-up rather than relying on clinical impression
- Ask about persistent toxicity at every visit, including years after treatment stopped
- Screen for lymphoedema in anyone who had nodal surgery, and for cognitive change after cerebral radiotherapy
- Establish a referral route for vocational and financial counselling
- Do not assume a patient who stopped treatment years ago has stopped having problems from it
Why it matters
Immunotherapy created a survivor population that the follow-up model was never designed for.
Don't overread it
A cross-sectional voluntary survey cannot give unbiased prevalence, and it cannot show that survivorship programmes improve these outcomes.
The statistics, in plain English
This was a voluntary online survey, so people with ongoing problems are more likely to have responded and the true proportions may be lower. An odds ratio of 1.99 with P = .025 is a real but modest association, and cross-sectional data cannot say whether toxicity caused the distress or the two simply travel together.
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