Co-design of a decision aid for the management of lentigo maligna in older and frailer adults

Abstract Background Lentigo maligna (LM) can be treated surgically, topically using imiquimod, or simply observed. The risk of progression to melanoma is considered low. There is clinical equipoise on management in older or frail adults, with no decision aids available for managing LM in this group. Objectives To co-design a patient decision aid (PDA) for the management of LM in older or frail adults. Methods The PDA was targeted at patients at least 85 years old, or those aged 75–84 years with a Rockwood Clinical Frailty Score of at least 4. Semi-structured interviews were conducted with patients and healthcare practitioners (HCPs) to co-design the tool. Thematic analysis was performed using NVivo 14. The prototype was tested via structured interviews with patients and HCPs, and amended in an iterative process until saturation was achieved. Results In total, 13 patients and 18 HCPs were interviewed to co-design the prototype. Alpha-testing resulted in saturation after 20 iterations. The following key themes (and subthemes) were identified Theme 1: fear of cancer (definition of LM; risk of progression; prognosis); Theme 2: burden of treatment (risks, side effects and delays in treatment; likelihood of recurrence; frequency of follow-up; impact on quality of life); Theme 3: partnership and shared decision-making (empowering patients; involving family and carers; burden of responsibility); and Theme 4: information overload (less is more; accessibility). Conclusions This is the first PDA for the management of LM in older and frail patients. This co-designed, patient-centred tool may empower patients to participate in decision-making by better understanding LM and the available management options.