Evaluating an approach for communicating integrated risk scores for melanoma

Abstract

Integrated risk scores (polygenic and non-genetic risk factors) can facilitate risk-stratification, to inform targeted melanoma screening. This mixed-methods pilot study assessed satisfaction, attitudes, and psychosocial impact of a protocol for communicating integrated risk for melanoma using questionnaires (baseline and 1-month post-results) and semi-structured interviews. Affected and unaffected adults enroled in ongoing melanoma studies were recruited to receive their integrated risk booklets and attend a genetic counselling appointment. 35/73 consented to participate; 31 and 33 completed baseline and follow-up questionnaires, respectively. Participants rated the information as useful, felt it motivated favourable health behaviours and were satisfied with the quality and content of the booklet. All participants felt highly empowered managing melanoma risk at baseline and follow-up. Most participants were unsure or felt little to no control over preventing future melanomas, which did not change at follow-up (Chi-square p = 0.73). Genetic-specific distress, and uncertainty was low for all participants post-results. Qualitative interviews supported quantitative findings and highlighted importance of access to a clinician for results interpretation and risk-management. In this high-risk cohort, the communication model was acceptable, and did not result in negative psychosocial sequelae. Findings from this study highlight key considerations for effective communication and delivery of integrated risk which can be used to inform future research in more diverse cohorts for melanoma and other common conditions.