Monarque Marika, Buron Laurianne, Granger Nadège Gendron, Louis-Delsoin Wendy, Labonté Nathalie, Provost Carole, Rosberger Zeev, Tsimicalis Argerie, Bergeron Élodie, Bonanno Marco, Sultan Serge, Laverdière Caroline, Desjardins Leandra
Sainte-Justine University Hospital Center (CHUSJ), Montreal, Québec, Canada.
Department of Psychology, University of Montreal, Montreal, Québec, Canada.
Child Care Health Dev. 2025 Jul;51(4):e70109. doi: 10.1111/cch.70109.
Supporting transition from paediatric to adult healthcare is essential for the long-term well-being of paediatric cancer survivors. Guided by an implementation science approach, our overall programme of research seeks to integrate transition readiness screening in the routine care of paediatric cancer survivors, using the validated Transition Readiness Assessment Questionnaire (TRAQ). To plan for the screening implementation, the primary objective of this study was to first assess paediatric cancer survivors' current experiences with transition preparation and their preferences for screening and resources. A secondary focus group with parents was also conducted to complement youth perspectives.
Focus groups were conducted with 14- to 18-year-old paediatric cancer survivors (n = 13) and parents (n = 6). Focus groups explored perceptions of care at the long-term follow-up clinic, transition preparedness, preferences for TRAQ administration (e.g., format, moment and location) and preferences for transition readiness resources. Interviews were analysed with an inductive thematic analysis approach.
This study identified several barriers to TRAQ implementation, including adolescents' lack of transition awareness, attachment to paediatric care and parental distress. Unclear TRAQ items were also noted as a challenge for adolescents. Strategies to address these barriers include regular discussions with healthcare providers, a comprehensive transition resource website, addressing emotional needs, providing parent guidance and offering flexible TRAQ administration options, for example, by leveraging technology (QR codes, choice of online or paper administration).
This study highlighted the importance of addressing the informational and emotional needs of adolescents and parents for implementation, notably by engaging in discussions with clinicians and tailoring online transition readiness resources. Preferences and suggestions for TRAQ administration and resources will be integrated to align with patients and parents' needs and optimize implementation.
The study identified key barriers to TRAQ implementation, including paediatric cancer survivors' lack of awareness of transition and understanding of the TRAQ, attachment to paediatric care and parental distress about long-term follow-up. Participants suggested strategies such as offering the TRAQ online, integrating it into wait times and enhancing awareness through individualized discussions. Addressing emotional needs through dedicated resources and incorporating discussions about transition-related distress into the TRAQ implementation process is crucial. Participants preferred online resources over paper formats, and a webpage on transition resources was acceptable to both adolescents and parents. Results of this study are an essential first step in the preparation of a successful TRAQ implementation, with findings allowing better planning and adaptation of implementation to the local context and to adolescents and parents.
支持从儿科医疗向成人医疗的过渡对于儿科癌症幸存者的长期健康至关重要。在实施科学方法的指导下，我们的整体研究计划旨在将过渡准备情况筛查纳入儿科癌症幸存者的常规护理中，使用经过验证的过渡准备情况评估问卷（TRAQ）。为了规划筛查的实施，本研究的主要目标是首先评估儿科癌症幸存者目前在过渡准备方面的经历以及他们对筛查和资源的偏好。还开展了一个与家长的二级焦点小组，以补充青少年的观点。
对14至18岁的儿科癌症幸存者（n = 13）和家长（n = 6）进行了焦点小组访谈。焦点小组探讨了对长期随访诊所护理的看法、过渡准备情况、TRAQ管理的偏好（如形式、时机和地点）以及对过渡准备资源的偏好。采用归纳主题分析方法对访谈进行分析。
本研究确定了TRAQ实施的几个障碍，包括青少年缺乏过渡意识、对儿科护理的依赖以及家长的困扰。TRAQ项目不明确也被认为是青少年面临的一个挑战。解决这些障碍的策略包括与医疗服务提供者定期讨论、建立一个全面的过渡资源网站、满足情感需求、为家长提供指导以及提供灵活的TRAQ管理选项，例如利用技术（二维码、在线或纸质管理的选择）。
本研究强调了满足青少年和家长在实施方面的信息和情感需求的重要性，特别是通过与临床医生进行讨论并定制在线过渡准备资源。将TRAQ管理和资源的偏好及建议进行整合，以符合患者和家长的需求并优化实施。
该研究确定了TRAQ实施的关键障碍，包括儿科癌症幸存者缺乏过渡意识和对TRAQ的理解、对儿科护理的依赖以及家长对长期随访的困扰。参与者提出了一些策略，如在线提供TRAQ、将其纳入候诊时间以及通过个性化讨论提高认识。通过专门的资源满足情感需求并将与过渡相关困扰的讨论纳入TRAQ实施过程至关重要。参与者更喜欢在线资源而非纸质形式，一个关于过渡资源的网页对青少年和家长都可以接受。本研究的结果是成功实施TRAQ准备工作的重要第一步，研究结果有助于更好地规划并使实施适应当地情况以及青少年和家长的需求。
