Annotated sources — melanoma patient voice¶
Every PubMed record below was retrieved live from PubMed E-utilities on 2026-09-01; every web resource was fetched on the stated access date. Ethics rules: README.md. Themes drawn from these sources: themes.md.
Systematic reviews and syntheses of patient experience¶
| Source | What it is | What it contributes |
|---|---|---|
| Fu Y, et al. Supportive care and unmet needs in patients with melanoma: a mixed-methods systematic review. Support Care Cancer. 2020. PMID 32342223 | 14 studies (10 quantitative, 3 qualitative, 1 mixed-methods), searched CINAHL/Medline/PsycINFO 2000–Nov 2019, quality assessed with the Mixed Methods Appraisal Tool | The ranking of unmet needs: informational first, then psychological, then social and physical; needs vary by stage across the whole journey. Supports T1. |
| Bath-Hextall F, et al. The needs and experiences of patients with skin cancer: a qualitative systematic review with metasynthesis. Br J Dermatol. 2017. PMID 27775838 | 14 studies (16 papers), meta-aggregative synthesis, updating a 2010 review that found only two studies | 15 categories of need. Also the source of an important caveat: only three of the 14 studies included keratinocyte-carcinoma patients, so most "skin cancer" qualitative evidence is melanoma evidence. Supports T1, T8. |
| Lamprell K, Braithwaite J. When Patients Tell Their Own Stories: A Meta-Narrative Study of Web-Based Personalized Texts of 214 Melanoma Patients' Journeys in Four Countries. Qual Health Res. 2018. PMID 29173015 | 214 experiential accounts from the personal-story sections of melanoma and cancer support websites, four countries, with ethical approval | Framework of supportive-care needs across three periods: lead-up to diagnosis; diagnosis, treatment and recovery; post-treatment and recurrence. Supports T1, T8. Used here at corpus level only; no individual account is described. |
| Reinhardt L, et al. A systematic review of patient-reported outcome measures for advanced skin cancer patients. Arch Dermatol Res. 2023. PMID 36469125 | PRISMA-guided PubMed/EMBASE search to March 2021 | Which PROMs have been used and which have been validated in advanced melanoma and non-melanoma skin cancer. Instrument-level, not experience-level. |
| Chernyshov PV, et al. Quality of life measurement in skin cancer patients: literature review and position paper of the EADV Task Forces. J Eur Acad Dermatol Venereol. 2019. PMID 30963614 | EADV Task Force position paper reviewing publications since 1980 | Catalogue of generic, dermatology-specific, cancer-specific and melanoma-specific instruments in use. |
Fear of recurrence¶
| Source | What it is | What it contributes |
|---|---|---|
| Mahama A, et al. Lived Experiences and Fear of Cancer Recurrence Among Survivors of Localized Cutaneous Melanoma. JAMA Dermatol. 2024. PMID 38353983 | Qualitative and survey study, 51 participants (mean age 49.5, 67% female), semistructured interviews plus FCRI-SF, single academic dermatology practice, Aug 2021–Sep 2022 | The measurement anchor: ≥13 of 36 on the FCRI-SF identifies clinically significant fear. Supports T2. Single-centre recruitment limits transportability. |
| Hansen NA, et al. Employing skin self-examination and fear of cancer recurrence management in early-stage melanoma follow-up: evaluation of the MELACARE intervention in a randomised controlled trial. J Cancer Surviv. 2025. PMID 40504479 | Two-group RCT, 153 patients with surgically treated stage IA–IIA melanoma, Herlev and Gentofte Hospital, Denmark; nurse-led sessions on self-examination technique and metacognitive strategies | The null result on the primary outcome with positive secondary outcomes. Supports T2, T5. The most informative negative finding in this layer. |
| Brown SL, et al. Seven-year distress trajectories in uveal melanoma survivors. Health Psychol. 2023. PMID 36848060 | Longitudinal cohort | Distress trajectory shape over seven years in a survivor population with unmodifiable prognostic knowledge. Supports T2. |
| Brown SL, et al. Fear of cancer recurrence and adverse cancer treatment outcomes: predicting 2- to 5-year fear of recurrence from post-treatment symptoms and functional problems in uveal melanoma survivors. J Cancer Surviv. 2023. PMID 34850324 | Longitudinal prediction study | Post-treatment symptoms and functional problems predict later fear of recurrence. Supports T2. |
| Müller A, et al. Anxiety, depression and fear of cancer recurrence in uveal melanoma survivors and ophthalmologist/oncologist communication during survivorship in France — protocol. BMC Psychiatry. 2024. PMID 39548476 | Study protocol, prospective observational mixed-method | Protocol only; recorded because it signals a dedicated uveal survivorship study in progress, not because it reports findings. |
The immunotherapy-era experience¶
| Source | What it is | What it contributes |
|---|---|---|
| Boulanger MC, et al. Patient and Caregiver Experience With the Hope and Prognostic Uncertainty of Immunotherapy: A Qualitative Study. JCO Oncol Pract. 2025. PMID 39038253 | 42 patients and 10 caregivers, median age 67, 68% male, 95% White, 62% with melanoma | Four themes including clinician-shaped hopeful expectations, disappointment among non-responders, and conflicting patient–caregiver preferences for prognostic information. Supports T3, T4. The 95%-White sample bounds transportability. |
| Fox J, et al. Uncertain diagnosis and prognosis in advanced melanoma: a qualitative study of the experiences of bereaved carers in a time of immune and targeted therapies. Br J Dermatol. 2019. PMID 30515757 | Grounded-theory-informed interviews with 20 bereaved carers, three Australian metropolitan melanoma centres | Uncertainty as the dominant quality of the carer experience; shock at diagnosis after innocuous presentation. Supports T3, T4. |
| Fox J, et al. Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers' experiences in metastatic melanoma. Palliat Med. 2020. PMID 32338133 | Interpretive qualitative study, social constructivist framework, grounded theory analysis, same carer population | Carers unable to reconcile the positive therapeutic discourse with individual unpredictability; unpreparedness for treatment failure and end of life. Supports T3, T4. |
| Lleshi E, et al. Impact on Quality of Life and Psychological Dimensions in Caregivers of Melanoma and Sarcoma Patients: A Scoping Review. Cancers. 2026. PMID 41827744 | 325 studies screened, 16 included | Instruments used and difficulty domains identified for caregivers. Supports T4. Pools melanoma with sarcoma, which limits melanoma-specific inference. |
| Higham CE, Olsson-Brown A. Adjuvant immunotherapy: the sting in the tail. Eur J Cancer. 2020. PMID 32388064 | Commentary | Argues the survivorship consequences of adjuvant immunotherapy in patients who would never have recurred. Single-source; recorded as an observation. |
| Ochenduszko S, et al. Adjuvant anti-PD1 immunotherapy of resected skin melanoma: an example of non-personalized medicine with no overall survival benefit. Crit Rev Oncol Hematol. 2024. PMID 39025250 | Critical review | A patient-facing critique of adjuvant therapy: recurrence-free but not overall survival benefit, no predictive markers, treatment offered on stage alone, a year of therapy with chronic-toxicity risk. Single-source critique; presented as a position, not a finding. |
Self-examination and behaviour¶
| Source | What it is | What it contributes |
|---|---|---|
| Moncrieff MD, et al. Follow-up Schedule for Patients With Sentinel Node-negative Cutaneous Melanoma (The MELFO Study). Ann Surg. 2022. PMID 35866644 | International randomised phase 3 trial, 388 patients, Netherlands and UK, 2006–2016, quality of life as primary outcome | Self-examination detected 75.8% / 76.2% of recurrences; no difference in any patient-reported outcome; >97% satisfaction in both arms. Supports T2, T5. |
| Robinson JK, et al. Early Detection of New Melanomas by Patients With Melanoma and Their Partners Using a Structured Skin Self-examination Skills Training Intervention. JAMA Dermatol. 2016. PMID 27367303 | Randomised clinical trial | Structured skills training improves patient-partner detection of new melanomas. Supports T5. |
| Manne SL, et al. mySmartCheck, a Digital Intervention to Promote Skin Self-examination. Ann Behav Med. 2022. PMID 34637495 | Randomised clinical trial | Digital delivery of self-examination promotion. Supports T5. |
| Robinson JK, et al. Remote skin self-examination training of melanoma survivors and their skin check partners. Cancer Med. 2020. PMID 32761987 | Randomised trial with in-person comparison | Remote training as an alternative delivery mode. Supports T5. |
| Robinson JK, et al. Skin self-examination education for early detection of melanoma: a randomized controlled trial of Internet, workbook, and in-person interventions. J Med Internet Res. 2014. PMID 24418949 | Three-arm randomised trial | Delivery-mode comparison. Supports T5. |
| Dieng M, et al. Patients' Views About Skin Self-examination After Treatment for Localized Melanoma. JAMA Dermatol. 2019. PMID 31090868 | Qualitative study of patient views | Patient perspective on the behaviour the trials promote. Supports T5. |
| Grossman DC, et al. Behavioral Counseling to Prevent Skin Cancer: USPSTF Recommendation Statement. JAMA. 2018. PMID 29558558 | USPSTF recommendation | I statement for counselling adults about skin self-examination. Supports T5, T7. |
| Henrikson NB, et al. Behavioral Counseling for Skin Cancer Prevention: Evidence Report and Systematic Review for the USPSTF. JAMA. 2018. PMID 29558557 | 21 trials, N = 20,561 | Interventions increase sun-protection behaviour but produce no consistent reduction in sunburn; one self-examination trial increased skin procedures without detecting additional lesions. Supports T5, T7. |
Financial and quality-of-life measurement¶
| Source | What it is | What it contributes |
|---|---|---|
| Thom B, et al. The experience of financial toxicity among advanced melanoma patients treated with immunotherapy. J Psychosoc Oncol. 2021. PMID 33103948 | Cross-sectional survey and medical-record review, 106 survivors, 39% response, median 36.4 months since starting immunotherapy | Younger patients (<65) report significantly higher financial toxicity (P < .001); financial toxicity correlates with quality of life. Supports T6. The 39% response rate is a substantial limitation. |
| Olateju OA, et al. Marginal health care expenditures for melanoma care in the United States. J Manag Care Spec Pharm. 2024. PMID 39612258 | MEPS 2011–2020 | Per-person expenditure lower than other non-skin cancers, higher than NMSC. Supports T6. |
| Thiam A, et al. Years of life lost due to metastatic melanoma in 12 countries. J Med Econ. 2016. PMID 26531249 | Modelled estimate across 12 countries | 16–23 years of life lost per metastatic patient. Supports T6. |
| Gautron Moura B, et al. Estimated Costs of the Ipilimumab-Nivolumab Therapy and Related Adverse Events in Metastatic Melanoma. Cancers. 2022. PMID 36612030 | Cost model | Treatment plus adverse-event costs. Supports T6. |
| Askew RL, et al. Mapping FACT-melanoma quality-of-life scores to EQ-5D health utility weights. Value Health. 2011. PMID 21914512 | Mapping study | Links the melanoma-specific instrument to a generic utility measure. |
| Swartz RJ, et al. Reducing patient burden to the FACT-Melanoma quality-of-life questionnaire. Melanoma Res. 2012. PMID 22395418 | Instrument-shortening study | Response burden of the melanoma-specific instrument. |
| Winstanley JB, et al. The FACT-Melanoma quality-of-life instrument: comparison of a five-point and four-point response scale using the Rasch measurement model. Melanoma Res. 2013. PMID 23262441 | Psychometric analysis | Response-scale structure. |
| Dieng M, et al. Sensitivity of Preference-Based Quality-of-Life Measures for Economic Evaluations in Early-Stage Melanoma. JAMA Dermatol. 2018. PMID 29188268 | Comparative measurement study | Which preference-based measures detect differences in early-stage disease. |
| Bührer E, et al. Adjuvant pembrolizumab versus placebo in resected stage III melanoma (KEYNOTE-054): long-term health-related quality-of-life results. Lancet Oncol. 2024. PMID 39146951 | Prespecified exploratory endpoint of a phase 3 trial, EORTC QLQ-C30 every 6 months in patients alive at 108 weeks | The most detailed trial-embedded long-term HRQOL data in adjuvant melanoma. |
| Coens C, et al. Health-related quality of life with adjuvant ipilimumab versus placebo (EORTC 18071). Lancet Oncol. 2017. PMID 28162999 | Secondary outcome of a phase 3 trial | HRQOL under adjuvant ipilimumab. |
| Noorda EM, et al. The health-related quality of life of long-term survivors of melanoma treated with isolated limb perfusion. Eur J Surg Oncol. 2007. PMID 17300914 | Survivor cohort | Long-term QOL after a specific locoregional treatment. |
Genomic and prognostic information¶
| Source | What it is | What it contributes |
|---|---|---|
| Fenton GL, et al. Exploring the emotional and behavioural reactions to receiving personalized melanoma genomic risk information: a qualitative study. Br J Dermatol. 2019. PMID 30580464 | Semistructured interviews with 30 pilot-trial participants (12 low, 8 average, 10 high risk) | Predominantly positive emotional responses; self-reported behaviour change, particularly in average and high-risk recipients. Supports T7. |
| Müller A, et al. [How do doctors communicate results of genomic testing and its prognostic impact on uveal melanoma patients?]. Bull Cancer. 2026. PMID 41203514 | Qualitative study of clinician communication | The hardest version of the problem: prognostic information without a modifying intervention. Supports T3, T7. |
Organisation web resources¶
Eighteen organisations across North America, the UK and Ireland, Australia, and Europe were fetched and verified on 2026-09-01; the full table with URLs and stated focus is in organizations.md. No organisation site is used as a source of clinical claims anywhere in this condition.
Campaign and advocacy evaluation¶
| Source | What it is | What it contributes |
|---|---|---|
| Williams HC, et al. Evaluation of public education campaigns in cutaneous melanoma: the King's College Hospital experience. Br J Dermatol. 1990. PMID 2390498 | Hospital pathology series, 1970–1987, with campaign years 1986–1987 | Diagnoses nearly doubled during the campaign, the proportion of thin lesions rose and thick lesions fell, but median thickness had already been declining before the campaign. This is temporal association, not a controlled mortality evaluation. |
| Mercado S, et al. Effectiveness of cross-sector collaboration in strategy implementation and impact: Evaluation of the NSW Skin Cancer Prevention Strategy 2016–2022. Health Promot J Austr. 2025. PMID 39663828 | Mixed-method process and outcome evaluation using campaign surveys, administrative data, document review and stakeholder interviews | Reported improvements in policy awareness, shade access and sun-protection behaviour. It did not evaluate melanoma incidence or mortality. |
Coverage limits¶
- Geographic and linguistic. The published qualitative base and the verified organisation directory are overwhelmingly Australian, British, North American and Northern European, and English-language. Africa, South America, South Asia, East Asia and the Middle East are absent from both.
- Subtype. No source located here reports the lived experience of acral, mucosal or uveal melanoma from a non-Western population, and only uveal melanoma has dedicated survivorship studies at all.
- Skin of colour. The populations with the worst melanoma outcomes are the least documented in this literature — recorded as theme T8 because the absence is systematic.
- Paediatric and adolescent melanoma. No patient- or parent-experience study specific to paediatric melanoma was located in this build.
- Overdiagnosis harms. Insurance, employment, surveillance burden and the psychological weight of a cancer label are argued in the overdiagnosis literature (Kutzner 2020, PMID 32841508; Greco 2026, PMID 42279200) but no study measuring them in melanoma patients was located.
- Advocacy evaluation. Campaign evaluations exist, but the located studies report diagnosis mix, awareness, environmental provision or behaviour rather than a controlled melanoma-incidence or mortality endpoint (PMID 2390498; PMID 39663828).
- Sample sizes are small. The largest qualitative sample here is 214 web-published accounts; the interview studies range from 20 to 52 participants.
- Response and selection bias. The financial-toxicity survey had a 39% response rate; the fear-of-recurrence study recruited from a single academic practice; the web-account corpus is self-selected by people who chose to publish.
- Recency. The principal qualitative syntheses searched to 2019 and 2015 respectively, which predates the stage IIB/IIC adjuvant era entirely.
- This layer records what has been published, not what patients experience. Where the two diverge, only the first is visible here.