Greenzang Katie A, Hatch Clara C, Revette Anna C, Villanueva Obed Posada, Kenney Lisa B, Mack Jennifer W, Vrooman Lynda M
Division of Population Sciences, Dana-Farber Cancer Institute, Boston, MA.
Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA.
JCO Oncol Pract. 2025 Mar 20:OP2400841. doi: 10.1200/OP-24-00841.
Families value up-front information about potential late effects (LE) of their child's cancer treatment. Yet, many parents and survivors feel uninformed about the risks of LE and unprepared for survivorship. We sought to identify patient, survivor, and parent information needs and preferences for early communication about LE.
We conducted a single-institution qualitative semistructured interview study with parents of children with cancer (on treatment and survivors) and adolescent and young adult (AYA) patients (on treatment and survivors) from April 2022 to April 2023. Purposeful sampling ensured diversity in diagnoses and sociodemographics. Interviews were audio-recorded, transcribed, and individually coded. Team-based iterative analysis identified themes within and across participant groups to identify areas of alignment and differences.
Thirty-six semistructured interviews were conducted with 42 participants: parents of patients receiving treatment (n = 13), parents of survivors (PSs, n = 12), AYA patients receiving treatment (n = 7), and AYA survivors (n = 10). Two key themes emerged: participants (1) valued LE information to prepare for the future although it can be emotionally difficult to hear and (2) expressed widespread support for a personalized, early LE communication resource. Key distinctions emerged between those actively receiving treatment and survivors: active treatment patients and parents endorsed feeling overwhelmed and preferred graduated LE information, whereas survivors and PSs more uniformly valued early information and were more likely to perceive gaps. Comparing parent and patient perspectives, parents expressed considerable worry about LE; many AYAs voiced lack of concern.
Parents and patients value LE information but have varied preferences for detail and timing. In survivorship, many wished that they had received more comprehensive up-front information. Further efforts are needed to tailor personalized communication regarding risks of LE.
家庭重视有关其孩子癌症治疗潜在远期效应（LE）的前期信息。然而，许多家长和幸存者觉得对LE风险了解不足，对生存问题毫无准备。我们试图确定患者、幸存者以及家长对于LE早期沟通的信息需求和偏好。
2022年4月至2023年4月，我们在一家机构开展了一项定性半结构化访谈研究，对象为癌症患儿（正在接受治疗的患儿及幸存者）的家长以及青少年和青年（AYA）患者（正在接受治疗的患者及幸存者）。目的抽样确保了诊断和社会人口统计学方面的多样性。访谈进行了录音、转录并单独编码。基于团队的迭代分析确定了参与者群体内部和群体之间的主题，以找出一致和不同的领域。
对42名参与者进行了36次半结构化访谈：正在接受治疗的患者的家长（n = 13）、幸存者的家长（PSs，n = 12）、正在接受治疗的AYA患者（n = 7）以及AYA幸存者（n = 10）。出现了两个关键主题：参与者（1）重视LE信息以便为未来做准备，尽管听到这些信息在情感上可能很难接受；（2）对个性化的早期LE沟通资源表达了广泛支持。正在积极接受治疗的患者和幸存者之间出现了关键区别：正在接受治疗的患者及其家长认可感到不堪重负，并更喜欢循序渐进的LE信息，而幸存者和PSs更一致地重视早期信息，并且更有可能察觉到信息差距。比较家长和患者的观点，家长对LE表达了相当大的担忧；许多AYA患者表示并不担心。
家长和患者重视LE信息，但对细节和时机有不同的偏好。在生存方面，许多人希望他们能收到更全面的前期信息。需要进一步努力定制关于LE风险的个性化沟通。
