BRAF and MEK inhibitors (BMi) and immune checkpoint inhibitors (ICI) have significantly improved overall survival for a proportion of patients with metastatic melanoma (MM)[1-4]. This has resulted in an emerging cohort of long-term responders. We characterised survivorship issues faced by these patients using a cross-sectional survey focusing on physical, psychological, social and functional issues. We present the analysis of the free-text components of the survey.
Eligible patients had MM, were aged >18, ≥ 6 months post initiation of BMi or ICI, and had attained an objective response or stable disease at last scan. A 72-item questionnaire was administered. This consisted of 69 closed questions, including items from validated measures and customised questions covering physical and psychological effects, impact on lifestyle, access to information, satisfaction with care, and availability of supports; as well as 3 free-text questions (‘What was most challenging about your diagnosis and/or treatment?’, ‘Are there things you would have liked to know that your treating doctor/s has not told you and/or that you have not asked?’, ‘Is there anything else you would like to tell us about living with advanced melanoma?’). The inclusion of these free-text questions enabled the identification of issues inadequately characterised by the closed questions.
Content analysis was used to assign text to content categories. Subsequent coding was based on categories (topic discussed) and frequencies (how many times raised). All comments raised were included in the analysis. Content analysis was performed by two investigators to improve reliability.
105/120 (88%) patients (ICI n= 69/ BMi n= 36) responded to the survey between August-December 2017. Of those, 91/105 (87%) patients (ICI n= 60/ BMi n= 31) completed one or more of the open-ended questions. Overall, the open-ended questions did not reveal many new themes not already covered by the closed questions. Dominant themes were (a) the challenges regarding diagnosis and treatment, including accessing expert care, the impact of MM diagnosis on sense of self and quality of life, dealing with the unknown, managing toxicities associated with treatment, and the need for frequent hospital visits for treatment and follow-up; (b) a desire for further information, regarding treatment (including likely duration and plans for cessation), prognosis, self-care and psychological support; and (c) the importance of ‘getting on’ with life and having a supportive environment, both at home and in the treatment centre.
Conclusions and implications for the field
Long-term responders face multiple challenges. Personalised, tailored resources are highly valued to inform patients about toxicities and treatment durations. The responses to the free-text questions supported the findings from the quantitative questionnaire, and provided a useful ‘safety net’ to ensure all issues were covered.