Pemberton-Whiteley Zack, Nier Samantha, Geissler Jan, Wintrich Sophie, Verhoeven Bregje, Christensen Rita O, Salek Sam, Oliva Esther Natalie, Ionova Tatyana, Bradley Jennie
Acute Leukemia Advocates Network (ALAN), Bern, Switzerland.
Leukaemia Care, Worcester, United Kingdom.
J Patient Cent Res Rev. 2023 Jan 17;10(1):21-30. doi: 10.17294/2330-0698.1951. eCollection 2023 Winter.
The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.
ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients' demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate relationships between HM-PRO scores and the other factors.
Of 552 respondents from 42 countries, 332 had acute myeloid leukemia, 139 had acute lymphoblastic leukemia, and 81 had acute promyelocytic leukemia (survey data collected in 2019). Younger age, female gender, and lower income were all significantly negatively associated with QoL. Weak or moderate correlations were observed between overall support, management, and impact of treatment and diagnosis of acute leukemia. Feeling isolated and having reduced ability to carry out physical or enjoyable activities were the most important individual factors, while the best predictors for QoL impact were age, gender, and income (model r=0.16, complete case n=449).
Findings indicated key factors, particularly age, gender, and socioeconomic state, that clinicians responsible for the care of patients with acute leukemia should be aware of when designing support strategies. The importance of social functioning in relation to patient QoL also should be included in considerations.
急性白血病倡导者网络（ALAN）旨在确定哪些因素与急性白血病患者的生活质量差最为相关，并通过由合作伙伴患者组织在全球范围内开展的在线调查，确定关键问题和未满足的需求。
ALAN在文献综述的基础上制定了一份问卷，该问卷广泛基于血液系统恶性肿瘤特异性患者报告结局（HM-PRO）指标，以评估急性白血病对生活质量的影响及其与患者人口统计学特征、疾病状态、疾病影响和医疗保健专业人员支持的关系。采用单变量和多变量统计分析来研究HM-PRO评分与其他因素之间的关系。
来自42个国家的552名受访者中，332人患有急性髓系白血病，139人患有急性淋巴细胞白血病，81人患有急性早幼粒细胞白血病（调查数据于2019年收集）。年龄较小、女性和收入较低均与生活质量显著负相关。观察到急性白血病治疗和诊断的总体支持、管理及影响之间存在弱或中度相关性。感到孤立以及进行身体活动或享受活动的能力下降是最重要的个体因素，而生活质量影响的最佳预测因素是年龄、性别和收入（模型r = 0.16，完整病例n = 449）。
研究结果表明了关键因素，尤其是年龄、性别和社会经济状况，负责照顾急性白血病患者的临床医生在设计支持策略时应予以关注。社会功能对患者生活质量的重要性也应纳入考虑范围。
