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Background Individuals with hereditary cancer predisposition syndromes (HCPS) often experience a range of psychosocial and medical challenges that can impact their quality of life (QoL). While QoL research can inform improved patient support and care models, recruitment and retention in such studies remain variable. This study explores the motivations and barriers influencing participation in QoL research among individuals with HCPS.Method 30 eligible participants were invited via email to take part in a semi-structured telephone interview. 15 individuals were subsequently interviewed. Interview responses were thematically analysed to identify common themes.Results 8/15 individuals agreed to participate in the QoL study, citing motivations such as altruism, desire for improved integrated care, and prior positive research experience. 7/15 individuals decided not to participate, highlighting barriers such as frustration with healthcare practice, ambiguity in research design, health-related constraints, and other practical concerns.Conclusion Participation in QoL research among individuals with HCPS is influenced by patients’ lived experiences and circumstances, emotional readiness, and perceived value of the research. Understanding these factors is crucial to ensuring patients can access research that benefits them, improving patient outcomes and quality of life. These findings can inform more inclusive and effective recruitment strategies for future QoL studies.