PDF(Pubmed)
Abstract：
This article presents the study design of the qualitative part of the VersKiK study (Long-term care, care needs and wellbeing of individuals after cancer in childhood or adolescence: study protocol of a large scale multi-methods non-interventional study) aiming to explore actual follow-up needs of childhood and adolescence cancer survivors and their informal caregivers, gaps in current follow-up care provision and trajectories of cancer survivors\' transition from paediatric to adult healthcare.
We will conduct up to 30 interviews with survivors of childhood and adolescence cancer and their informal caregivers with up to 20 participant observations of follow-up appointments. The results of these will be discussed in up to four focus groups with healthcare professionals and representatives of self-help groups. The study design aims to evaluate follow-up care after childhood cancer considering perspectives from survivors, their informal caregivers as well as healthcare providers. The combination of different data sources will allow us to get an in-depth understanding of the current state of follow-up care after paediatric cancer in Germany and to suggest recommendations for care improvement.
The VersKiK study was approved by the Ethics Committee Otto von Guericke University on 2 July 2021 (103/21), by the Ethics Committee of Johannes Gutenberg University Mainz on 16 June 2021 (2021-16035), by the Ethics Committee University of Lübeck on 10 November 2021 (21-451), by the Ethics Committee University of Hospital Bonn on 28 February 2022 (05/22). For each part of the qualitative study, a separate written informed consent is prepared and approved accordingly by the ethics committees named above.
Registered at German Clinical Trial Register, ID: DRKS00026092.
We will conduct up to 30 interviews with survivors of childhood and adolescence cancer and their informal caregivers with up to 20 participant observations of follow-up appointments. The results of these will be discussed in up to four focus groups with healthcare professionals and representatives of self-help groups. The study design aims to evaluate follow-up care after childhood cancer considering perspectives from survivors, their informal caregivers as well as healthcare providers. The combination of different data sources will allow us to get an in-depth understanding of the current state of follow-up care after paediatric cancer in Germany and to suggest recommendations for care improvement.
The VersKiK study was approved by the Ethics Committee Otto von Guericke University on 2 July 2021 (103/21), by the Ethics Committee of Johannes Gutenberg University Mainz on 16 June 2021 (2021-16035), by the Ethics Committee University of Lübeck on 10 November 2021 (21-451), by the Ethics Committee University of Hospital Bonn on 28 February 2022 (05/22). For each part of the qualitative study, a separate written informed consent is prepared and approved accordingly by the ethics committees named above.
Registered at German Clinical Trial Register, ID: DRKS00026092.
摘要：
背景：本文介绍了VersKiK研究定性部分的研究设计（长期护理，儿童或青春期癌症患者的护理需求和健康：大规模多方法非干预性研究的研究方案）旨在探索儿童和青春期癌症幸存者及其非正式护理人员的实际随访需求，癌症幸存者从儿科到成人医疗保健的当前随访护理提供和轨迹的差距。
方法：我们将对儿童和青少年癌症幸存者及其非正式护理人员进行多达30次访谈，并对多达20次参与者的随访预约进行观察。这些结果将在多达四个焦点小组中与医疗保健专业人员和自助小组的代表进行讨论。该研究设计旨在评估儿童癌症后的后续护理，考虑到幸存者的观点，他们的非正式护理人员以及医疗保健提供者。不同数据源的组合将使我们能够深入了解德国儿科癌症后随访护理的现状，并提出改善护理的建议。
背景：VersKiK研究于2021年7月2日获得奥托·冯·格里克大学伦理委员会的批准（103/21），由约翰内斯古腾堡大学美因茨伦理委员会于2021年6月16日（2021-16035），由吕贝克大学伦理委员会于2021年11月10日（21-451），由波恩大学医院伦理委员会于2022年2月28日（05/22）。对于定性研究的每一部分，单独编写书面知情同意书,并由上述伦理委员会相应批准.
背景：在德国临床试验注册登记，ID：DRKS00026092。
方法：我们将对儿童和青少年癌症幸存者及其非正式护理人员进行多达30次访谈，并对多达20次参与者的随访预约进行观察。这些结果将在多达四个焦点小组中与医疗保健专业人员和自助小组的代表进行讨论。该研究设计旨在评估儿童癌症后的后续护理，考虑到幸存者的观点，他们的非正式护理人员以及医疗保健提供者。不同数据源的组合将使我们能够深入了解德国儿科癌症后随访护理的现状，并提出改善护理的建议。
背景：VersKiK研究于2021年7月2日获得奥托·冯·格里克大学伦理委员会的批准（103/21），由约翰内斯古腾堡大学美因茨伦理委员会于2021年6月16日（2021-16035），由吕贝克大学伦理委员会于2021年11月10日（21-451），由波恩大学医院伦理委员会于2022年2月28日（05/22）。对于定性研究的每一部分，单独编写书面知情同意书,并由上述伦理委员会相应批准.
背景：在德国临床试验注册登记，ID：DRKS00026092。
