Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Harvard Medical School, Boston, MA, USA.
Massachusetts General Hospital Cancer Center, Boston, MA, USA; Harvard Medical School, Boston, MA, USA.
Blood Rev. 2021 Jan;45:100692. doi: 10.1016/j.blre.2020.100692. Epub 2020 Apr 6.
It is critical for patients with hematologic malignancies to have an accurate understanding of their illness and prognosis to make informed treatment decisions. Illness and prognostic understanding have primarily been studied in patients with solid tumors, however, data in patients with hematologic malignancies are rapidly growing. Patients with hematologic malignancies often face a unique and unpredictable illness trajectory with the possibility of cure persisting even in relapsed and refractory settings. These patients often require intensive therapies such as high-dose chemotherapy, hematopoietic stem cell transplantation (HCT), or CAR T-cell therapy, which carry with them significant risk of morbidity, mortality, and prognostic uncertainty. In this review article, we first described the current literature on illness and prognostic understanding in patients with hematologic malignancies including 1) patients' varying desire for prognostic information; (2) patients' prognostic misperceptions, (3) the association between patients' prognostic understanding and their psychological outcomes; and (4) barriers to prognostic understanding. Next, we examined insights gained from the literature about illness and prognostic understanding in patients with solid tumors to guide our understanding of the research gaps in hematologic malignancies. Future studies are needed to better delineate the longitudinal relationship between prognostic understanding, psychological distress, and coping in patients with hematologic malignancies. Strategies such as communicating effectively about prognosis, cultivating adaptive coping in the face of a terminal prognosis, and integrating specialty palliative care for patients with hematologic malignancies have the potential to improve patients' prognostic understanding and their quality of life and care.
对于血液系统恶性肿瘤患者来说，准确了解自己的疾病和预后，以便做出明智的治疗决策至关重要。尽管疾病和预后的理解主要在实体瘤患者中进行了研究，但血液系统恶性肿瘤患者的数据正在迅速增长。血液系统恶性肿瘤患者的疾病轨迹常常是独特且不可预测的，即使在复发和难治性环境中也有可能治愈。这些患者通常需要接受高强度的治疗，如大剂量化疗、造血干细胞移植（HCT）或 CAR T 细胞治疗，这些治疗都伴随着严重的发病率、死亡率和预后不确定性的风险。在这篇综述文章中，我们首先描述了目前关于血液系统恶性肿瘤患者疾病和预后理解的文献，包括：1）患者对预后信息的不同需求；2）患者的预后误解；3）患者对预后的理解与心理结局之间的关联；4）预后理解的障碍。接下来，我们考察了从实体瘤患者疾病和预后理解的文献中获得的见解，以指导我们对血液系统恶性肿瘤研究空白的理解。未来的研究需要更好地描绘血液系统恶性肿瘤患者预后理解、心理困扰和应对之间的纵向关系。在血液系统恶性肿瘤患者中，如有效沟通预后、面对终末期预后培养适应性应对、以及整合专业姑息治疗等策略，有可能改善患者的预后理解及其生活质量和护理。
