Abstract
BACKGROUND: Patient-reported outcome instruments are needed to measure health-related quality of life (HRQOL) in young adults with cancer. The purpose of this project was to establish a conceptual model and measurement instrument for assessment of HRQOL in young men with testicular cancer. METHODS: Patient interviews and a literature review were used to develop a conceptual framework of biopsychosocial domains of cancer-related quality of life and an initial pool of questionnaire items. Items were piloted and refined. Revised items were administered to a sample (N = 171) of young (ages 18-29) men with testicular cancer and repeated 4 weeks later. Rasch measurement methods guided item reduction and scale construction. Traditional psychometric analyses were also performed to allow for comparison with existing measures. RESULTS: The conceptual framework included seven biopsychosocial domains: physical, sexual, intrapersonal, cognitive-emotional, social-relational, educational-vocational-avocational, and spiritual to form independent scales of the resulting questionnaire, the Cancer Assessment for Young Adults-Testicular (CAYA-T). Each scale fulfilled Rasch and traditional psychometric criteria (i.e., person separation index, 0.34-0.82; Cronbach's alpha, 0.70-0.91; and an expected pattern of convergent and discriminant validity correlations). CONCLUSIONS: The CAYA-T can be used to assess HRQOL across a comprehensive set of domains as identified by young men with cancer. It passes strict psychometric criteria and has potential as a useful research and clinical tool. IMPLICATIONS FOR CANCER SURVIVORS: The CAYA-T has potential research and clinical value for addressing inter-related aspects of HRQOL in young adult men with cancer. The measure may assist with assessing and monitoring HRQOL across a range of domains and contributing to more comprehensive assessment of biopsychosocial needs of young adults.