Skip to content

Patient voice — melanoma

This layer synthesises public, aggregate evidence about how people experience melanoma. It does not treat testimonial as efficacy evidence and it does not create dossiers on individuals.

Files

File Contents
organizations.md Verified patient and advocacy organisations worldwide, with URL and access date
themes.md Themes, each supported by at least two independent sources
sources.md Annotated source list with an honest statement of coverage limits

The wiki-facing synthesis is ../../wiki/patient-experience-and-advocacy.md.

Method — 2026-09-01

Published literature. Live PubMed E-utilities searches combined melanoma with: patient reported outcomes, unmet needs, qualitative, fear of cancer recurrence, caregivers, bereaved carers, quality of life, FACT-M, financial toxicity, genomic risk information, skin self-examination, and survivorship. Uveal melanoma was searched separately because its survivorship literature is distinct. Every PMID in this layer was returned and fetched through PubMed E-utilities during this build session.

Organisations. Each organisation site listed in organizations.md was fetched over HTTPS on 2026-09-01 and its HTTP status and page title recorded. A live page establishes that the organisation had a current web presence with a stated mission on that date. It does not establish reach, funding, governance, service quality, or that any service described is available to a given person.

Ethics applied

  1. Public sources only. No closed groups, private forums, direct messages, member databases or patient records.
  2. No private individual is named, quoted or profiled anywhere in this layer or in the wiki page it supports.
  3. Paraphrase over quotation. The repository convention permits attributed quotations of 15 words or fewer; this layer uses none, which is stricter.
  4. Aggregate reporting only. Themes are reported at the level of the study or the source corpus, never at the level of an individual account.
  5. A theme requires at least two independent sources. Single-source observations are recorded in sources.md as observations, not promoted to themes.
  6. Patient report and carer report are kept separate where they differ, because in advanced melanoma they demonstrably do.
  7. Organisation entries describe stated mission and verified presence, not outcomes.
  8. Public figures and organisational spokespeople may be named in their public role; no patient is.
  9. Qualitative studies identify mechanisms and priorities, not prevalence. Sample sizes and recruitment settings are stated so that transportability can be judged.
  10. Where the evidence is absent, that is recorded as absence, dated, rather than filled with plausible narrative.

Interpretation boundaries

  • Melanoma is at least four diseases and the experience differs accordingly. Localised cutaneous melanoma is largely an experience of surveillance and fear of recurrence; advanced cutaneous melanoma is an experience of prognostic uncertainty under immunotherapy; uveal melanoma is an experience of prognostic information without a modifying intervention; acral and mucosal melanoma are barely represented in this literature at all.
  • The immunotherapy era changed the psychosocial problem. The durable-response plateau made individual prognosis less predictable, and carers report that as a distinct harm.
  • Skin cancer qualitative research often pools melanoma with keratinocyte carcinoma. Of 14 studies in the principal metasynthesis, only three included keratinocyte-carcinoma patients, so most of that "skin cancer" evidence is melanoma evidence.
  • Overdiagnosis has a patient-experience dimension that has not been measured. The harms attributed to it — insurance, employment, surveillance burden, the psychological weight of a cancer label — are argued in the literature rather than quantified.