Medical College of Wisconsin, Department of Pediatrics, Section of Hematology, Oncology, and Blood and Marrow Transplant, Milwaukee, WI.
Children's Hospital of Wisconsin, MACC Fund Center for Cancer and Blood Disorders, Milwaukee, WI.
Pediatr Blood Cancer. 2018 Aug;65(8):e27109. doi: 10.1002/pbc.27109. Epub 2018 Apr 26.
BACKGROUND/OBJECTIVES: The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment.
DESIGN/METHODS: Forty-nine caregiver-child dyads completed semi-structured interviews and surveys 1-2 months before ending treatment, and again 3-7 months after treatment concluded.
Patients and caregivers reported a moderate level of understanding of follow-up care needs, late effects, and perceived preparation. Altogether, child, adolescent, and young adult cancer patients and parents identified similar priorities for information needed during the transition off active treatment. The most essential pieces of information desired by patients and families across time points included reviews of late effects, schedules for follow-up care, health and physical restrictions, communication with the patient's primary care provider, and provision of a treatment summary. At Time 2, patients and families reported a greater retrospective desire for emotional health resources. Most patients and caregivers wanted information from a variety of sources, but the desired timing to receive this information varied and was dependent on disease group.
There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.
背景/目的：从积极治疗转为康复期是儿童癌症患者及其家庭面临的一个压力重大的时期。在此期间为患者及其家庭提供信息和支持是儿科肿瘤学新的心理社会护理标准之一。本研究旨在探讨患者及其家庭在结束积极治疗时的需求和关注点。
设计/方法：49 对照顾者-患儿对在结束治疗前 1-2 个月和结束治疗后 3-7 个月完成了半结构化访谈和调查。
患者及其照顾者报告对随访护理需求、晚期效应和感知准备有中等程度的了解。总的来说，儿童、青少年和年轻成人癌症患者及其父母在积极治疗结束时的信息需求方面确定了相似的优先级。患者及其家庭在各个时间点都希望获得的最必要的信息包括晚期效应评估、随访护理计划、健康和身体限制、与患者初级保健提供者的沟通以及提供治疗总结。在时间 2 时，患者及其家庭报告了对情绪健康资源的更大的回顾性需求。大多数患者及其照顾者希望从各种来源获取信息，但所需的信息接收时间因疾病组而异。
结束治疗护理有许多重要的组成部分，但并未始终向儿童癌症患者及其家庭提供。在积极治疗结束之前，应多学科团队提供正式的教育和支持计划。
