Abstract

Abstract A melanoma diagnosis can have significant emotional and psychosocial impact, yet little guidance exists on how best to support individuals following initial diagnosis. This multicentre UK study aimed to evaluate the baseline needs of melanoma survivors and assess attitudes towards practising skin self-examination (SSE) to inform the development of intervention(s) that best support patients with melanoma beyond diagnosis. A prospective multicentre questionnaire study was conducted across four UK sites, including adults diagnosed with American Joint Cancer Committee (AJCC version 8) stage I–III primary cutaneous melanoma. Participants were invited within 3–12 months of their initial diagnosis to self-complete an electronic questionnaire (using Qualtrics software) evaluating unmet needs, which included the Functional Assessment of Cancer Therapy—Melanoma (FACT-M), Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF), Melanoma specific unmet needs (SF-36), Sun Protection Behaviour Scale (SPBS), Skin Self-Examination (SSE) benefits and barriers scale, and European Quality of Life 5 Dimensions (EQ-5D). STATA 17 was used for the data analysis. Overall, 252 participants were recruited and 55 excluded for failure to provide any responses. The sample was predominantly male (56.3%) and White (100%), with high educational qualifications (52.1%) and not in paid/self-employment (53.2%). Sites of primary melanoma included the trunk (n = 61; 31.0%), head/neck (n = 45; 22.8%), arm (n = 44; 22.3%), leg (n = 33; 16.8%), hands/feet (n = 10; 5.1%) and genitals (n < 5; < 2.5%). SSE barrier and benefit scales had median scores of 29 [interquartile range (IQR) 27–32] and 27 (IQR 22–32), respectively, indicating positive attitudes towards SSE; however, several barriers exist, including identifying abnormal moles and associated anxiety. The majority of participants (56.4%) were identified as having at least one unmet care need, most commonly with regard to information on recurrence risk (37.1%) and SSE (33.0%). The FACT-M, FACT-M trial outcome index and FACT-G (general) had median scores of 26 (IQR 12–38; n = 180), 16 (IQR 6–22, n = 183) and 21 (IQR 8–29; n = 180), respectively. Participants had a median EQ-5D score of 0.92 [IQR 0.86–1.0; full health = 1.0 (n = 189)] and 59.9% were identified as having less than full health. This multicentre UK study indicates that melanoma survivors experience low quality of life within the first year of their diagnosis. Routine collection of melanoma-specific patient-reported outcome measures could improve the patient experience by stratifying patients to receive appropriate supportive care. Focused educational tools guiding sun protection habits and SSE are needed to reduce the risk of further melanomas. Future qualitative data will support an evidence base to develop supportive tools, enabling patients to take an active role in self-management.

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