Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study (Preprint)

Abstract

<sec> <title>BACKGROUND</title> <p>Most children and adolescents diagnosed with cancer become long-term survivors. For most of them, regular follow-up examinations to detect and treat late effects are necessary, especially in adulthood. The transition from pediatric to adult-focused follow-up care is a critical moment for childhood cancer survivors (CCSs), and a substantial proportion of CCS are lost to follow-up in this transition process and do not attend follow-up care in adulthood. This can have serious effects on survivors’ health if late effects are discovered late.</p> </sec> <sec> <title>OBJECTIVE</title> <p>In this study, we primarily assess the current follow-up situation, related needs, and knowledge of adolescent and young adult CCSs who have transitioned from pediatric to adult-focused follow-up care. As secondary objectives, we evaluate transition readiness, identify facilitating factors of transition and adherence to long-term follow-up (LTFU) care, and compare three different transition models.</p> </sec> <sec> <title>METHODS</title> <p>The Aftercare of Childhood Cancer Survivors (ACCS) Switzerland study is a prospective, multicenter, observational study that was approved by the ethics committee in February 2019. We are recruiting CCSs from three pediatric oncology centers and using questionnaires to answer the study questions.</p> </sec> <sec> <title>RESULTS</title> <p>To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021.</p> </sec> <sec> <title>CONCLUSIONS</title> <p>The ACCS study will provide information on CCSs’ preferences and expectations for follow-up care and their transition into the adult setting. The results will help improve the LTFU care and cancer knowledge of CCSs and subsequently enhance adherence to follow-up care and reduce loss to follow-up in adulthood.</p> </sec> <sec> <title>CLINICALTRIAL</title> <p>ClinicalTrials.gov NCT04284189</p> </sec>