DS26 Identifying patient research priorities in melanoma: a national qualitative study
Authors: Khaylen Mistry, Omsin Srimudkal, Dimitrios Karponis, Mitesh Patel, John Ragan, Zoe C Venables, Nick J Levell
Journal: British Journal of Dermatology (2024)

Abstract Outcomes for advanced melanoma have improved following immunotherapy or targeted therapy. This impels reconsideration of research agendas. This ongoing, national, qualitative study identified the prioritized unanswered research questions of patients with melanoma. Patients aged ≥ 18 years, of any sex, ethnicity and disease stage, diagnosed with melanoma within 10 years, were recruited across England by skin cancer charities using purposive sampling. Pre-interview questionnaires obtained demographic, tumour and treatment information. Semistructured interviews were conducted. Patients were asked what they thought were important questions for research in melanoma. Interviews were transcribed and thematic analysis was completed on NVivo using elements of grounded theory (several phases of coding, constant comparison and sampling until saturation). Seven patients were interviewed from seven English regions: 71% (5 of 7) were female and their ages ranged from 25–34 to 75–84 years. Overall, 29% (2 of 7) identified as disabled, while 57% (4 of 7) had stage IV melanoma. All participants underwent surgery, 57% (4 of 7) immunotherapy and 29% (2 of 7) targeted therapy. Five key themes were identified. (i) What are the risk factors for and how to prevent melanoma? Patients prioritized research into risk factors including genetics, diet, socioeconomics, occupation, skin products and comorbidities. (ii) What are the outcomes, side-effects and interactions of immunotherapy and targeted therapy? Patients specified that research needed to improve understanding of the long-term outcomes and duration of treatment, frequency of side-effects, and interactions with comorbidities, coprescriptions and diet. (iii) What is the best approach to follow-up? Patients recommended research into the frequency, duration and modality (face-to-face vs. virtual) of follow-up given the expansion of new treatments and technologies, and changing recurrence rates. Participants reflected their interest in the usefulness of psychological support for patients and their families who survived melanoma. (iv) What factors influence survival? Patients prioritized examination of modifiable factors (diet, exercise, smoking, alcohol, body habitus, socioeconomics, geographical region and comorbidities). (v) How to reduce diagnostic delay? Patients emphasized reducing the knowledge gap between dermatologists and nonspecialists or the public, and suggested research focused on educational interventions to achieve early diagnosis. Patients highlighted the importance of investigation to understand the role of artificial intelligence in melanoma diagnosis. This is the first study to report patient research priorities in melanoma. Many of the themes identified align with NICE research recommendations. Additionally, novel themes were identified, which provide rationale to develop a James Lind Alliance Priority Setting Partnership for melanoma. If research addresses questions relevant to patients, decision makers will be equipped to deliver services that meet patient needs.