PDF(Pubmed)
Abstract：
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
摘要：
目的：目前的方法来传达儿科肿瘤治疗的潜在晚期影响，使许多患者和家庭感到不了解风险和对未来的准备。我们旨在确定提供者对后期影响的早期沟通的看法。
方法：从2021年12月至2022年3月，在Dana-Farber/Boston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化访谈。有目的的采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。
结果：我们采访了9名儿科肿瘤服务提供者；所有人都表示不适，讨论早期治疗对话中潜在的迟发效应。后期影响沟通的障碍包括(I)社会情感因素，包括缺乏对家庭的重要性，担心家庭的情感负担，和提供者无助/想要提供希望的感觉；和(Ii)次优的设置/资源，包括同意书的限制，时间限制,缺乏可用的数据。所有提供商都支持创建沟通工具，以协助早期讨论后期影响。
结论：由于对家庭的感知影响以及当前实践和可用资源的局限性，因此沟通迟发效应风险给提供者带来了独特的挑战。这些发现支持需要一种后期效应沟通工具来帮助早期沟通后期效应风险。
方法：从2021年12月至2022年3月，在Dana-Farber/Boston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化访谈。有目的的采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。
结果：我们采访了9名儿科肿瘤服务提供者；所有人都表示不适，讨论早期治疗对话中潜在的迟发效应。后期影响沟通的障碍包括(I)社会情感因素，包括缺乏对家庭的重要性，担心家庭的情感负担，和提供者无助/想要提供希望的感觉；和(Ii)次优的设置/资源，包括同意书的限制，时间限制,缺乏可用的数据。所有提供商都支持创建沟通工具，以协助早期讨论后期影响。
结论：由于对家庭的感知影响以及当前实践和可用资源的局限性，因此沟通迟发效应风险给提供者带来了独特的挑战。这些发现支持需要一种后期效应沟通工具来帮助早期沟通后期效应风险。
