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

Abstract

Background 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); a substantial proportion of CCSs 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 not discovered in a timely fashion. Objective 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. Methods 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. Results To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021. Conclusions 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. Trial Registration ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189 International Registered Report Identifier (IRRID) PRR1-10.2196/18898

Transition from disease to survival: accounts of adolescents who have experienced cancer

“…Continuous monitoring programs are necessary to identify possible late effects, offer emotional support and health education, and improve the quality of life of these adolescent cancer survivors 12 ), ( 29 ), ( 30 ), ( 31 ), ( 32 ), ( 33 ), ( 34 . Care management models for cancer survivors are being developed around the world to support these patients handle the consequences of the treatment and help with required adaptations in the period of transition from disease to cure 12 ), ( 28 ), ( 29 ), ( 30 ), ( 31 ), ( 32 ), ( 33 ), ( 34 .…”

Cancer knowledge and health-consciousness in childhood cancer survivors following transition into adult care—results from the ACCS project

“…This study is part of the Aftercare of Childhood Cancer Survivors (ACCS) study, a prospective, multicenter, observational study, including a cross-sectional and longitudinal part ( 21 ). Three pediatric oncology centers were included, each with a different transition model.…”

“…Group 1 survivors received a baseline questionnaire before the annual visit and follow-up questionnaires after 3 and 15 months. Group 2 survivors received one baseline questionnaire at study inclusion ( 21 ). Here, we analyzed the cross-sectional part of the ACCS study.…”

Feasibility of a registry for standardized assessment of long-term and late-onset health events in survivors of childhood and adolescent cancer

“…The CCSs were still alive, were treated between 1992 and 2015 and still in follow-up care in the Division of Oncology-Haematology, Department of Pediatrics, Kantonsspital Aarau. In this division, CCSs who become young adults are transitioned into adult-focussed follow-up care through combined consultations with pediatric and adult physicians 12 .…”