Health-related quality of life in young men with testicular cancer: validation of the Cancer Assessment for Young Adults (CAYA).

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.