Assessing quality of life in young adult cancer survivors: development of the Survivorship-Related Quality of Life scale

Scientific advances in treatments and outcomes for those diagnosed with cancer in late adolescence and early adulthood depend, in part, on the availability of adequate assessment tools to measure health-related quality of life (HRQOL) for survivors in this age group. Domains especially relevant to late adolescence and young adulthood (LAYA; e.g., education and career, committed romantic relationships, worldview formation) are typically overlooked in studies assessing the impact of cancer, usually more appropriate for middle-aged or older survivors. Current HRQOL measures also tend to assess issues that are salient during or shortly after treatment rather than reflecting life years after treatment. To develop a new measure to better capture the experience of LAYA cancer survivors in longer-term survivorship (the LAYA Survivorship-Related Quality of Life measure, LAYA-SRQL), we completed an extensive measure development process. After a literature review and focus groups with LAYA cancer survivors, we generated items and ran confirmatory factor and reliability analyses using a sample of 292 LAYA cancer survivors. We then examined validity using existing measures of physical and mental health, quality of life, and impact of cancer. The final model consisted of two domains (satisfaction and impact), each consisting of ten factors: existential/spirituality, coping, relationship, dependence, vitality, health care, education/career, fertility, intimacy/sexuality, and cognition/memory. Confirmatory factor analysis and validity analyses indicated that the LAYA-SRQL is a psychometrically sound instrument with good validity. The LAYA-SRQL fills an important need in survivorship research, providing a way to assess HRQOL in LAYAs in a developmentally informed way.