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

Sibylle Denzler, Maria Otth, Katrin Scheinemann, Sibylle Denzler, Maria Otth, Katrin Scheinemann

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://ichgcp.net/clinical-trials-registry/NCT04284189?id=NCT04284189.

International registered report identifier (irrid): PRR1-10.2196/18898.

Keywords: Switzerland; childhood cancer survivors; long-term follow-up care; transition.

Conflict of interest statement

Conflicts of Interest: None declared.

©Sibylle Denzler, Maria Otth, Katrin Scheinemann. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 26.08.2020.

Figures

Figure 1
Figure 1
Timeline of the Aftercare of Childhood Cancer Survivors (ACCS) study and time points where group 1a participants answer questionnaires; questionnaire sections are numbered and identical numbers correspond to identical content.
Figure 2
Figure 2
Timeline of the Aftercare of Childhood Cancer Survivors (ACCS) study and time points where group 1b participants answer questionnaires; questionnaire sections are numbered and identical numbers correspond to identical content.
Figure 3
Figure 3
Timeline of the Aftercare of Childhood Cancer Survivors (ACCS) study and time point where group 2 participants answer the questionnaire.

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