Boland E G, Boland J W, Ezaydi Y, Greenfield D M, Ahmedzai S H, Snowden J A
Academic Unit of Supportive Care, Department of Oncology, University of Sheffield, Sheffield, UK,
Support Care Cancer. 2014 Oct;22(10):2615-20. doi: 10.1007/s00520-014-2231-2. Epub 2014 Apr 15.
It is recommended that patients with multiple myeloma should be assessed for unmet holistic needs at key times in their disease trajectory. The aim of this exploratory study was to characterise the holistic needs of advanced, intensively treated multiple myeloma using a structured assessment tool.
Patients with multiple myeloma who had undergone a haematopoietic stem cell transplantation and subsequent treatment for at least one episode of progressive disease but were in stable plateau phase were included in the study. Patients' holistic needs were assessed using the self-reporting tool, Sheffield Profile for Assessment and Referral for Care (SPARC).
Thirty-two patients with a median age of 60 years at assessment and a median of 5.5 years from diagnosis were recruited. Using the SPARC, half of the patients reported tiredness as 'quite a bit/very much,' while one third complained that daytime somnolence and insomnia were 'quite a bit/very much.' Forty-four percent of patients reported pain. One third of patients were bothered and distressed by the side effects from their treatment and were worried about long-term effects of their treatment. Thirty-one percent of patients felt that the effect of their condition had an impact on their sexual life, and 40 % were worried about the effect that their illness was having on their family or other people.
This is the first study to use a self-reported holistic needs assessment tool in multiple myeloma. A multidimensional structured questionnaire like the SPARC could provide a useful first step in the effective delivery of supportive and palliative care for patients with multiple myeloma.
建议对多发性骨髓瘤患者在其疾病进程的关键节点评估未满足的整体需求。本探索性研究的目的是使用结构化评估工具来描述晚期、接受强化治疗的多发性骨髓瘤患者的整体需求。
本研究纳入了接受过造血干细胞移植且后续至少经历过一次疾病进展治疗但处于稳定平台期的多发性骨髓瘤患者。使用自我报告工具“谢菲尔德护理评估与转诊概况”（SPARC）对患者的整体需求进行评估。
招募了32例患者，评估时的中位年龄为60岁，自诊断起的中位时间为5.5年。使用SPARC评估发现，一半的患者表示疲劳程度为“相当/非常严重”，三分之一的患者抱怨白天嗜睡和失眠程度为“相当/非常严重”。44%的患者报告有疼痛。三分之一的患者因治疗副作用而感到困扰和痛苦，并担心治疗的长期影响。31%的患者认为自身病情对其性生活有影响，40%的患者担心疾病对其家人或其他人的影响。
这是第一项在多发性骨髓瘤中使用自我报告的整体需求评估工具的研究。像SPARC这样的多维结构化问卷可为有效开展多发性骨髓瘤患者的支持性和姑息性护理提供有益的第一步。
