Abstract
BackgroundMost 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.ObjectiveIn 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.MethodsThe 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.ResultsTo date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021.ConclusionsThe 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 RegistrationClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189International Registered Report Identifier (IRRID)PRR1-10.2196/18898
Highlights
BackgroundMost children and adolescents diagnosed with cancer become long-term survivors and need lifelong follow-up care [1]
Some late effects are characteristic of childhood cancer survivor ICCC3 (CCS), while most of them are associated with aging in the general population but develop earlier in CCSs
Studies show that long-term follow-up (LTFU) care improves the detection of late effects and survivors’ health behavior and knowledge, encourages health care use, and decreases survivors’ distress levels [3]
Summary
BackgroundMost children and adolescents diagnosed with cancer become long-term survivors and need lifelong follow-up care [1]. Studies show that long-term follow-up (LTFU) care improves the detection of late effects and survivors’ health behavior and knowledge, encourages health care use, and decreases survivors’ distress levels [3]. 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. Trial Registration: ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189 International Registered Report Identifier (IRRID): PRR1-10.2196/18898
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