Adolescent and young adult cancer survivors - body image and sexual health

Abstract

Background Adolescent and young adult cancer survivors constitute a group in society of which the numbers are increasing. To optimize rehabilitation efforts, we need to understand the possible physical and psychological consequences of cancer treatment for adolescent and young adult cancer survivors. The purpose of this study has been to identify the needs and topics that adolescents and young adults acknowledge as being important to them, and furthermore to explore possible physical and psychological complications post cancer treatment. Methods This thesis uses a combination of qualitative and quantitative methods. Eleven focus group interviews were conducted with adolescent and young adult cancer survivors aged 15-29. Subsequently, a study-specific web-based questionnaire was sent to a population-based cohort of adolescent and young adult cancer survivor and matched controls. 540 out of 721 (74%) eligible participants responded to the questionnaire. The topics covered in the questionnaire were psychosocial health, body image, sexuality, fertility, education, work and leisure. Results Adolescent and young adult cancer survivors reported in focus group interviews that they had unmet needs during and after cancer treatment, including age-appropriate information about sexuality. In the questionnaire study, they reported feeling less attractive than controls due to scars on their bodies, and they reported low satisfaction with their sexual function compared to controls. The participants did not find that questions addressing very personal and emotionally charged issues, like sexual activity, affected them negatively. Conclusions Adolescent and young adult cancer survivors perceived themselves as being unattractive due to scars on their bodies and were less satisfied with their sexual function than matched population-based controls. They also expressed the need for support to reintegrate into normal social life.