Patient research priorities in melanoma: a national qualitative interview study

Abstract 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.