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SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap?
PURPOSE: Advances in treatment have increased survival rates and quality of life of pediatric CNS tumor patients leading to a growing number of long-term survivors. However, there is sufficient clinical and scientific evidence for the need of a highly specialized lifelong follow-up care due to multi...
Autores principales: | , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9164870/ http://dx.doi.org/10.1093/neuonc/noac079.678 |
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author | Krottendorfer, Kerstin Baumgartner, Alicia-Christina Boehm, Alexandra Ziomek, Sabina Peyrl, Andreas Gsell, Hannah Schneider, Carina Rosenmayr, Verena Gojo, Johannes Salomon Azizi, Amedeo Rinner, Sarah Burger, Sabine Huemer, Marlene Pucher, Anna Leiss, Ulrike |
author_facet | Krottendorfer, Kerstin Baumgartner, Alicia-Christina Boehm, Alexandra Ziomek, Sabina Peyrl, Andreas Gsell, Hannah Schneider, Carina Rosenmayr, Verena Gojo, Johannes Salomon Azizi, Amedeo Rinner, Sarah Burger, Sabine Huemer, Marlene Pucher, Anna Leiss, Ulrike |
author_sort | Krottendorfer, Kerstin |
collection | PubMed |
description | PURPOSE: Advances in treatment have increased survival rates and quality of life of pediatric CNS tumor patients leading to a growing number of long-term survivors. However, there is sufficient clinical and scientific evidence for the need of a highly specialized lifelong follow-up care due to multidimensional late effects. Furthermore, adolescence and young adulthood are challenging age periods when patients frequently get lost to follow-up potentially having severe impact on health and well-being. Since 2020, we have established a structured transfer of long-term survivors older than 18 years to a newly founded highly specialized adult care follow-up setting for childhood cancer survivors (IONA). The aim of this study was to evaluate the current transition process. RESEARCH DESIGN: The standard of care transition process at the neuro-oncology unit of the MUV includes a joint appointment with the patient, a pediatric neuro-oncologist, psychologist and/or social worker and the team of the adult care facility (physician, psychologist). Different elements are used to end care safely in the pediatric structure and building trust in the upcoming out-patient-department at the same time. The transition process was evaluated statistically and analyzed qualitatively with regard to the factors that define a safe transition. RESULTS: After two years (01/2020-12/2021) 114 patients had a joint transition appointment, two patients contacted IONA directly. Shortly after the joint appointment all patients had a scheduled follow-up meeting at IONA. 102 patients (87.9%) showed up, seven patients (6%) already had a planned appointment, two patients (1.7%) were in contact with IONA but had no possibility to show up in person. Only five patients (4.3%) did not attend the appointment and were lost to follow-up. CONCLUSION: A structured interdisciplinary transition concept is a successful option to establish controlled and patient-safe transition from pediatric to adult care setting. |
format | Online Article Text |
id | pubmed-9164870 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-91648702022-06-05 SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap? Krottendorfer, Kerstin Baumgartner, Alicia-Christina Boehm, Alexandra Ziomek, Sabina Peyrl, Andreas Gsell, Hannah Schneider, Carina Rosenmayr, Verena Gojo, Johannes Salomon Azizi, Amedeo Rinner, Sarah Burger, Sabine Huemer, Marlene Pucher, Anna Leiss, Ulrike Neuro Oncol Social Work/Patient Support/Palliative Care PURPOSE: Advances in treatment have increased survival rates and quality of life of pediatric CNS tumor patients leading to a growing number of long-term survivors. However, there is sufficient clinical and scientific evidence for the need of a highly specialized lifelong follow-up care due to multidimensional late effects. Furthermore, adolescence and young adulthood are challenging age periods when patients frequently get lost to follow-up potentially having severe impact on health and well-being. Since 2020, we have established a structured transfer of long-term survivors older than 18 years to a newly founded highly specialized adult care follow-up setting for childhood cancer survivors (IONA). The aim of this study was to evaluate the current transition process. RESEARCH DESIGN: The standard of care transition process at the neuro-oncology unit of the MUV includes a joint appointment with the patient, a pediatric neuro-oncologist, psychologist and/or social worker and the team of the adult care facility (physician, psychologist). Different elements are used to end care safely in the pediatric structure and building trust in the upcoming out-patient-department at the same time. The transition process was evaluated statistically and analyzed qualitatively with regard to the factors that define a safe transition. RESULTS: After two years (01/2020-12/2021) 114 patients had a joint transition appointment, two patients contacted IONA directly. Shortly after the joint appointment all patients had a scheduled follow-up meeting at IONA. 102 patients (87.9%) showed up, seven patients (6%) already had a planned appointment, two patients (1.7%) were in contact with IONA but had no possibility to show up in person. Only five patients (4.3%) did not attend the appointment and were lost to follow-up. CONCLUSION: A structured interdisciplinary transition concept is a successful option to establish controlled and patient-safe transition from pediatric to adult care setting. Oxford University Press 2022-06-03 /pmc/articles/PMC9164870/ http://dx.doi.org/10.1093/neuonc/noac079.678 Text en © The Author(s) 2022. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com |
spellingShingle | Social Work/Patient Support/Palliative Care Krottendorfer, Kerstin Baumgartner, Alicia-Christina Boehm, Alexandra Ziomek, Sabina Peyrl, Andreas Gsell, Hannah Schneider, Carina Rosenmayr, Verena Gojo, Johannes Salomon Azizi, Amedeo Rinner, Sarah Burger, Sabine Huemer, Marlene Pucher, Anna Leiss, Ulrike SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap? |
title | SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap? |
title_full | SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap? |
title_fullStr | SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap? |
title_full_unstemmed | SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap? |
title_short | SWK-06. Structured transition from pediatric neuro-oncology to adult survivorship follow-up care - Can we close the gap? |
title_sort | swk-06. structured transition from pediatric neuro-oncology to adult survivorship follow-up care - can we close the gap? |
topic | Social Work/Patient Support/Palliative Care |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9164870/ http://dx.doi.org/10.1093/neuonc/noac079.678 |
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