Division of Pediatric Hematology and Oncology, Department of Pediatrics, University of Utah, Salt Lake City, Utah, USA.
Oregon Clinical and Translational Research Institute, Oregon Health and Science University, Portland, Oregon, USA.
Pediatr Blood Cancer. 2023 Oct;70(10):e30490. doi: 10.1002/pbc.30490. Epub 2023 Jun 19.
Completing therapy for childhood cancer is an exciting milestone. However, this adjustment can be extremely stressful for patients and their families as they transition from cancer patient to survivor. A better understanding of the patient and family experience and their needs during this transition is crucial for developing guidelines and leveraging support for future patients and families.
Participants were recruited from across the United States using a maximum variation sampling strategy. Families were eligible if they had a child diagnosed with cancer before age 15 and had completed treatment at least 1 year prior to their interview. Participants completed a 90-180-minute semi-structured interview either in person or virtually. Interviews focused on the experiences of getting a diagnosis, experiences with treatment, information seeking, impact of cancer on the family, social support, and transitions to survivorship. Inductive thematic analysis revealed a wide variety of themes. This paper examines the transition from active cancer therapy into survivorship.
Identified primary themes included (i) feelings about transitioning off therapy; (ii) coping with lingering effects; and (iii) experiences of transitioning off therapy and survivorship care. Subthemes highlighted the need for more support for both patients and families during this transition.
Patients and families desire more support during the transition off therapy. Suggestions included access to additional resources, earlier transition to receiving survivorship care, and more holistic survivorship care. Further research is needed to determine best models and feasibility of delivering this desired support to all patients and families.
完成儿童癌症的治疗是一个令人兴奋的里程碑。然而，患者及其家属在从癌症患者过渡到幸存者时，可能会面临极大的压力。深入了解患者及其家属在这一过渡时期的经历和需求，对于制定指南以及为未来的患者和家庭提供支持至关重要。
采用最大变异抽样策略，从美国各地招募参与者。如果一个家庭的孩子在 15 岁之前被诊断出患有癌症，并且在接受采访前至少完成了 1 年的治疗，那么他们就有资格参与。参与者通过面对面或虚拟的方式完成了 90-180 分钟的半结构化访谈。访谈的重点是诊断时的经历、治疗经历、信息寻求、癌症对家庭的影响、社会支持以及向幸存者的过渡。归纳主题分析揭示了各种各样的主题。本文研究了从积极的癌症治疗过渡到幸存者的过程。
确定的主要主题包括（i）对停止治疗的感受；（ii）应对遗留影响；以及（iii）停止治疗和接受幸存者护理的经历。子主题强调了在这一过渡时期患者和家庭都需要更多支持。
患者及其家属在停止治疗期间希望得到更多的支持。建议包括获得更多的资源、更早地过渡到接受幸存者护理，以及提供更全面的幸存者护理。需要进一步研究，以确定向所有患者和家庭提供这种期望支持的最佳模式和可行性。
