Five-year survivors of stage IV melanoma: persistent adverse effects, distress and financial strain

Design

Multicentre cross-sectional online survey

Population

296 survivors more than 5 years after stage IV melanoma, from 40 centres

Primary outcome

Persistent treatment-related adverse events, distress and socioeconomic outcomes

Effect

About 40% distress and 40% persistent adverse events; adverse events linked to distress, OR 1.99 (p = 0.025)

An online survey reached 296 people from 40 centres in Austria, Germany and Switzerland who had survived more than five years after a stage IV melanoma diagnosis. About 30% had had brain metastases, nearly 80% had received immune checkpoint inhibitors and about 27% targeted therapy.

Around 40% reported distress above threshold and around 40% persistent treatment-related adverse events. Cognitive deficits after cerebral radiotherapy and lymphoedema after surgery were the most frequent complaints. Persistent adverse events from systemic therapy went with higher distress (odds ratio 1.99, p = 0.025). About 23% reported financial constraints, 62% of those aged 65 or under were still working, half of them with reduced hours, and 44% of retirees had retired early because of melanoma.

The survey was voluntary and cross-sectional, so those with problems may be over-represented. It still points to needs that routine skin surveillance visits do not capture.

• About 40% of long-term survivors reported persistent adverse events and about 40% distress.
• Cognitive deficits and lymphoedema were the commonest complaints.
• About 23% reported financial constraints.
• Ask about work, money and mood at surveillance visits.
• Persistent adverse events were linked to higher distress, which does not prove cause.

Why it matters

Surviving stage IV melanoma is now common enough that late effects have become a clinic problem.

Don't overread it

A voluntary online survey cannot give true prevalence and cannot show that the treatments caused the symptoms.

The statistics, in plain English

An odds ratio of 1.99 means survivors with persistent systemic-therapy effects had about double the odds of high distress. Because everyone was surveyed at one time, the direction of the link is unclear, and people who chose to respond may not represent all survivors.

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