Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors

Purpose: As survival rates of adolescent and young adult (AYA) cancer patients increase, a growing number of AYA cancer survivors need follow-up care. However, there is little research on their preferences for follow-up care. We aimed to 1) describe AYA cancer survivors' preferences for the organization and content of follow-up care; 2) describe their preferences for different models of follow-up; and 3) investigate clinical and socio-demographic characteristics associated with preferences for the different models. Methods: AYA cancer survivors (diagnosed with cancer at age 16-25 years; ≥5 years after diagnosis) were identified through the Cancer Registry Zurich and Zug. Survivors completed a questionnaire on follow-up attendance, preferences for organizational aspects of follow-up care (what is important during follow-up, what should be included during appointments, what specialists should be involved, location), models of follow-up (telephone/questionnaire, general practitioner (GP), pediatric oncologist, medical oncologist, multi-disciplinary team) and sociodemographic characteristics. Information on tumor and treatment was available through the Cancer Registry Zurich and Zug. Results: Of 389 contacted survivors, 160 (41.1%) participated and 92 (57.5%) reported still attending follow-up. Medical aspects of follow-up care were more important than general aspects (p