Levine Deena R, Van Noy Kelsey, Talleur Aimee C, Snyder Angela, Kaye Erica C, Baker Justin N
Division of Quality-of-life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.
Texas Tech University Health Sciences Center Paul L. Foster School of Medicine, El Paso, TX, USA.
Bone Marrow Transplant. 2020 Jun;55(6):1103-1113. doi: 10.1038/s41409-020-0794-8. Epub 2020 Jan 28.
Hematopoietic cell transplantation (HCT) affords curative potential for high-risk patients but also carries risk of morbidity and mortality. Early palliative care (PC) integration can aid in supporting patients and families, fostering goal-directed care, and maximizing quality-of-life throughout. However, little is known about patient and family hopes, worries, goals, or values in pediatric HCT. Through retrospective review of pretransplant PC consultations, this study sought to provide insights from this unique patient population. Across 100 initial PC encounters conducted between December 2015 and March 2018, patient and caregiver responses to five targeted questions were extracted and analyzed. Data analysis revealed themes related to patient quality-of-life, caregiver/parent role, hopes, and worries. The most commonly identified thematic responses within each topic area were patient quality-of-life "electronics/entertainment" (49%), caregiver/parent role "doing right by my child" (58%), hopes "cure" (83%), worries "potential side effects" (43%), other spirituality (34%), and resiliency (29%). These findings provide an understanding of the values, goals, priorities, hopes, and fears experienced by pediatric HCT patients and their families, which may help inform a targeted approach to improve communication and overall care throughout transplantation. Variability was noted, underscoring the importance of fostering flexible, patient/family-centered communication beginning in the pretransplant period.
造血细胞移植（HCT）为高危患者提供了治愈的可能，但也存在发病和死亡风险。早期整合姑息治疗（PC）有助于支持患者及其家庭，促进目标导向的治疗，并在整个过程中最大限度地提高生活质量。然而，对于小儿造血细胞移植患者及其家庭的希望、担忧、目标或价值观，我们知之甚少。通过对移植前姑息治疗咨询进行回顾性研究，本研究旨在从这一独特的患者群体中获取见解。在2015年12月至2018年3月期间进行的100次初始姑息治疗会诊中，提取并分析了患者和照顾者对五个针对性问题的回答。数据分析揭示了与患者生活质量、照顾者/家长角色、希望和担忧相关的主题。每个主题领域中最常出现的主题回答分别是：患者生活质量方面的“电子设备/娱乐”（49%）、照顾者/家长角色方面的“为孩子做正确的事”（58%）、希望方面的“治愈”（83%）、担忧方面的“潜在副作用”（43%）、其他方面的“灵性”（34%）和“恢复力”（29%）。这些发现有助于了解小儿造血细胞移植患者及其家庭的价值观、目标、优先事项、希望和恐惧，这可能有助于制定有针对性的方法，以改善整个移植过程中的沟通和整体护理。研究注意到了变异性，强调了从移植前期就开始建立灵活的、以患者/家庭为中心的沟通的重要性。
