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Updated: May 24, 2025
A Melanoma Patient-Derived Xenograft Model
Published on: May 20, 2019
Patient research priorities in melanoma: a national qualitative interview study
Khaylen Mistry1,2, Omsin Srimudkul2, Mitesh Patel3
1Department of Dermatology, Norfolk and Norwich University Hospital, Norwich, UK.
Background:
Outcomes for advanced melanoma have improved following the advent of immunotherapy and targeted therapy. This heralds a need for reconsideration of future research agendas. Patients can - and are keen to - help identify and prioritize research topics to ensure future research benefits patients. No previous peer-reviewed research has reported patient research priorities for melanoma.
Objectives:
To determine the prioritized research topics of patients with melanoma in England.
Methods:
Patients aged ≥ 18 years, diagnosed with melanoma in the past 10 years, were recruited across England by skin cancer charities. Preinterview questionnaires obtained demographic, tumour and treatment information. Semi-structured interviews were conducted where patients were asked what they thought were important topics to research in melanoma. Using a grounded theory approach, transcripts were analysed in an iterative process to identify themes for patient research priorities.
Results:
Twenty patients were individually interviewed from eight of nine English regions. Five key themes were identified: (1) 'Risk factors and prevention of melanoma' - patients voiced a desire for research into modifiable risk factors and public campaigns to prevent melanoma; (2) 'Diagnostic delay and misdiagnosis of melanoma' - patients felt diagnostic delays could be reduced through research to support nonspecialists and integrating technology such as teledermatology or artificial intelligence'; (3) 'Indications, outcomes, side-effects and interactions of treatments for melanoma' - novel treatments inspired patients to encourage future research into the indications, outcomes and side-effects of therapeutic options; (4) 'Optimizing follow-up for melanoma' - with increased survivorship, research to support the delivery of a personalized approach to follow-up was valued; and (5) 'Factors that influence survival from melanoma' - patients prioritized research to accurately predict recurrence and survival based on patient-specific factors.
Conclusions:
This is the first peer-reviewed study to report patient research priorities in melanoma. Many of the themes identified align with National Institute for Health and Care Excellence research recommendations. Additionally, novel themes were identified that provide a rationale to develop a James Lind Alliance Priority Setting Partnership for melanoma. If research addresses topics relevant to patients, decision-makers will be equipped to deliver services that meet patient needs.
Insights
Patients with melanoma identified key research priorities including prevention, diagnosis, treatment outcomes, follow-up care, and survival factors. This study highlights the need for patient-centered research to improve melanoma care and outcomes.
Area of Science:
- Oncology
- Dermatology
- Health Services Research
Background:
- Melanoma treatment outcomes have improved with immunotherapy and targeted therapy.
- Patient involvement is crucial for prioritizing future melanoma research.
- No prior studies have documented patient-led research priorities for melanoma.
Purpose of the Study:
- To determine and prioritize research topics identified by patients with melanoma in England.
Main Methods:
- Twenty melanoma patients (diagnosed within 10 years) across England were interviewed.
- Semi-structured interviews explored patient-identified research priorities.
- Grounded theory analysis identified key themes in patient-reported research needs.
Main Results:
- Five priority themes emerged: melanoma risk/prevention, diagnostic delay/misdiagnosis, treatment indications/outcomes/side-effects, follow-up optimization, and survival prediction.
- Patients emphasized research into modifiable risk factors, diagnostic aids (AI, teledermatology), personalized follow-up, and predictive survival factors.
- Patient priorities included understanding novel treatment effects and optimizing survivorship care.
Conclusions:
- This study is the first to report patient-prioritized research for melanoma.
- Identified themes align with existing recommendations and suggest a need for a James Lind Alliance Priority Setting Partnership.
- Patient-centered research is essential for developing services that meet patient needs in melanoma care.
