Boston Combined Residency Program, Boston, Massachusetts, USA.
Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Pediatr Blood Cancer. 2024 Aug;71(8):e31093. doi: 10.1002/pbc.31093. Epub 2024 Jun 5.
Current approaches to communicating the potential late effects of pediatric oncology treatments leave many patients and families feeling unaware of risks and unprepared for the future. We aimed to identify provider perspectives on early communication about late effects.
Semi-structured interviews were conducted with pediatric oncology providers at Dana-Farber/Boston Children's Cancer and Blood Disorders Center from December 2021 to March 2022. Purposeful sampling ensured a diversity of clinical roles. Thematic analysis was conducted using deductive and inductive codes.
We interviewed nine pediatric oncology providers; all expressed discomfort discussing potential late effects in early treatment conversations. Barriers to late effects communication included (i) social-emotional factors, including lack of perceived importance to families, worry about emotional burden on families, and provider feelings of helplessness/wanting to provide hope; and (ii) suboptimal set-up/resources, including limitations of consent forms, time constraints, and lack of available data. All providers supported the creation of a communication tool to assist early discussions of late effects.
Communicating about late effect risks poses unique challenges to providers because of the perceived impact on families and the limitations of current practices and available resources. These findings support the need for a late effects communication tool to assist in early communication about late effects risks.
目前儿科肿瘤治疗潜在迟发效应的沟通方法让许多患者和家属对风险认识不足，对未来毫无准备。我们旨在确定提供者对迟发效应早期沟通的看法。
2021 年 12 月至 2022 年 3 月，我们在丹娜-法伯/波士顿儿童癌症和血液疾病中心对儿科肿瘤提供者进行了半结构式访谈。采用目的性抽样确保了临床角色的多样性。使用演绎和归纳代码进行主题分析。
我们采访了 9 名儿科肿瘤提供者；所有人都表示在早期治疗对话中讨论潜在的迟发效应时感到不舒服。迟发效应沟通的障碍包括（i）社会情感因素，包括对家庭的重要性缺乏认知、对家庭情绪负担的担忧、以及提供者的无助感/希望提供希望；以及（ii）次优的设置/资源，包括同意书的局限性、时间限制和缺乏可用数据。所有提供者都支持创建一种沟通工具，以协助早期讨论迟发效应。
提供者在沟通迟发效应风险方面面临独特的挑战，因为这会对家庭产生影响，并且受到当前实践和可用资源的限制。这些发现支持需要一种迟发效应沟通工具来协助早期沟通迟发效应风险。
