Living with advanced or metastatic melanoma: A patient-driven conceptual model

Background Patients with advanced/metastatic melanoma experience various symptoms that significantly impact on their health-related quality of life (HRQoL). However, a comprehensive conceptual model (CM) has not been developed to capture the full spectrum of patient-reported symptoms and impacts. This study aimed to develop a patient-centered CM for advanced/metastatic melanoma. Methods Targeted literature review and clinician interviews informed the development of a preliminary CM. To refine and finalize the CM, semi-structured interviews were conducted with US-based patients diagnosed with advanced or metastatic melanoma. Furthermore, the Functional Assessment of Cancer Therapy-Melanoma (FACT-M), European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), pain Numeric Rating Scale (NRS), and itch NRS were chosen for cognitive debriefing of patients. Results The preliminary CM was developed using 10 articles and five patient blogs. Interviews with three clinicians identified 15 priority symptoms and one key impact. Subsequently, interviews with 20 patients revealed additional 70 symptoms and 47 impacts. Frequently reported and bothersome symptoms included fatigue (n=19), lumps or nodes (n=14), fever (n=13), joint pain (n=13), changes in vision (n=13), chills (n=12), and itching (n=11). Debriefing of FACT-M, EORTC QLQ-C30, pain NRS, and itch NRS items revealed that most participants found these measures clear, easy to understand, and relevant to their experiences with advanced/metastatic melanoma. Conclusions This study presents the first patient-informed CM for advanced/metastatic melanoma, offering a comprehensive overview of the disease- and treatment-related symptoms and impacts, which can guide the selection of meaningful outcome measures in future clinical trials.