Kentor Rachel A, Mehler Shoshana, Christianson Caroline, Farner Harmony, Brinkman Tara M, Baker Justin N, Hinds Pamela S, Mack Jennifer W, Kaye Erica C
Divisions of Palliative Care and Psychology, Department of Pediatrics, Baylor College of Medicine/Texas Children's Hospital, Houston, Texas, USA.
Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Pediatr Blood Cancer. 2025 Aug 4:e31964. doi: 10.1002/pbc.31964.
Navigating prognostic communication is challenging for clinicians caring for adolescents and young adults (AYAs) with poor-prognosis cancer. Presently, little is known about how AYA and parent preferences for prognostic disclosure evolve over time. This study explored communication preferences at key illness milestones of disease progression to inform individualized, person-centered approaches to optimize prognostic disclosure.
Sixty-five participants, including 25 AYAs aged 12-25 years and 40 parents, were recruited at distinct illness timepoints-diagnosis, relapse/progression, Phase I/II trial enrollment, and bereavement-to participate in semi-structured interviews about their preferences for timing, style, and content of prognostic communication. Rapid analysis was conducted to generate and compare themes across timepoints.
Preferences for early, ongoing, and repeated prognostic discussions were increasingly reported by AYAs and parents at advancing illness milestones, with bereaved parents particularly emphasizing the value of early disclosure in retrospect. Parents of living AYAs, though not bereaved parents, advised oncologists to consider excluding AYAs from prognostic conversations-a view rarely shared by AYAs themselves. AYAs and parents preferred oncologist-led communication and also advocated for the inclusion of multidisciplinary clinicians.
These findings highlight the dynamic nature of prognostic communication preferences across the illness trajectory and key variances between AYA and parents' preferences. Early and serial prognostic conversations are welcomed by many AYAs and parents, and multidisciplinary support may enhance communication satisfaction, particularly as preferences shift over time. Future research will investigate longitudinal interventions that recognize evolving communication preferences to personalize prognostic disclosure across pediatric cancer care.
对于照顾预后不良癌症的青少年和青年（AYA）患者的临床医生而言，进行预后沟通具有挑战性。目前，对于AYA及其父母对预后信息披露的偏好如何随时间演变知之甚少。本研究探讨了疾病进展关键病程节点上的沟通偏好，以为优化预后信息披露的个性化、以患者为中心的方法提供依据。
招募了65名参与者，包括25名年龄在12至25岁之间的AYA患者和40名家长，他们处于不同的病程时间点——诊断、复发/进展、I/II期试验入组和丧亲之痛——参与关于他们对预后沟通的时间、方式和内容偏好的半结构化访谈。进行快速分析以生成并比较不同时间点的主题。
随着病程进展，AYA患者及其父母越来越倾向于尽早、持续且反复地进行预后讨论，丧亲的父母尤其强调回顾早期披露的价值。在世AYA患者的父母（而非丧亲的父母）建议肿瘤学家考虑将AYA患者排除在预后讨论之外——这一观点很少得到AYA患者自身的认同。AYA患者及其父母更喜欢由肿瘤学家主导的沟通，也主张纳入多学科临床医生。
这些发现凸显了整个病程中预后沟通偏好的动态性质，以及AYA患者与父母偏好之间的关键差异。许多AYA患者及其父母都欢迎早期和系列预后讨论，多学科支持可能会提高沟通满意度，尤其是随着偏好随时间变化。未来的研究将调查纵向干预措施，这些措施能够认识到不断演变的沟通偏好，以便在儿科癌症护理中个性化预后信息披露。
