Patient research priorities in melanoma: a national qualitative interview study.

Abstract

Background: Outcomes for advanced melanomas 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 prioritise research topics to ensure future research benefits patients. No previous peer-reviewed research has reported patient research priorities for melanoma.

Objectives: To determine melanoma patients' prioritised research topics in England.

Methods: Patients ≥18 years, diagnosed with melanoma within the past ten years were recruited across England by skin cancer charities. Pre-interview 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 8/9 English regions. Five key themes were identified. (1) Risk factors and prevention of melanoma. Patients voiced 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 non-specialists 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) Optimising follow-up for melanoma. With increased survivorship, research to support the delivery of a personalised approach to follow-up was valued. (5) Factors that influence survival from melanoma. Patients prioritised 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 NICE research recommendations. Additionally, novel themes were identified which provides 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 which meet patient needs.