Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study
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 c...
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| Format: | Article |
| Language: | English |
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JMIR Publications
2020-08-01
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| Series: | JMIR Research Protocols |
| Online Access: | http://www.researchprotocols.org/2020/8/e18898/ |
| _version_ | 1818899471204876288 |
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| author | Denzler, Sibylle Otth, Maria Scheinemann, Katrin |
| author_facet | Denzler, Sibylle Otth, Maria Scheinemann, Katrin |
| author_sort | Denzler, Sibylle |
| collection | DOAJ |
| description | 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=NCT04284189
International Registered Report Identifier (IRRID)PRR1-10.2196/18898 |
| first_indexed | 2024-12-19T19:48:29Z |
| format | Article |
| id | doaj.art-ead6376a7e6d4810824e66725f416811 |
| institution | Directory Open Access Journal |
| issn | 1929-0748 |
| language | English |
| last_indexed | 2024-12-19T19:48:29Z |
| publishDate | 2020-08-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Research Protocols |
| spelling | doaj.art-ead6376a7e6d4810824e66725f4168112022-12-21T20:08:05ZengJMIR PublicationsJMIR Research Protocols1929-07482020-08-0198e1889810.2196/18898Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational StudyDenzler, SibylleOtth, MariaScheinemann, KatrinBackgroundMost 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=NCT04284189 International Registered Report Identifier (IRRID)PRR1-10.2196/18898http://www.researchprotocols.org/2020/8/e18898/ |
| spellingShingle | Denzler, Sibylle Otth, Maria Scheinemann, Katrin Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study JMIR Research Protocols |
| title | Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study |
| title_full | Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study |
| title_fullStr | Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study |
| title_full_unstemmed | Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study |
| title_short | Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study |
| title_sort | aftercare of childhood cancer survivors in switzerland protocol for a prospective multicenter observational study |
| url | http://www.researchprotocols.org/2020/8/e18898/ |
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