Yang Ran, Yao Hao, Lin Lin, Ji Jian-Min, Shen Qun
Department of Hematology, Affiliated Hospital of Nanjing University of Chinese Medicine, Nanjing, 210029 Jiangsu Province China.
Indian J Hematol Blood Transfus. 2020 Jan;36(1):104-111. doi: 10.1007/s12288-019-01124-7. Epub 2019 Jun 15.
To describe the health-related quality of life (HRQoL) and fatigue burden among adult patients with immune thrombocytopenia (ITP) in China and determine whether they vary with disease phase. This is a cross-sectional, multi-centre observational study of adult ITP patients and the general population. Participants completed the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) and Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F). We compared HRQoL and fatigue between ITP patients and the general population, overall and by disease phase (newly diagnosed, persistent, and chronic), using propensity score matching. 203 Patients and 269 members of the general population were recruited. Thirty-six ITP patients (17.7%) were newly diagnosed, 46 (22.7%) were persistent, and 121 (59.6%) were chronic. Compared with the general population, ITP patients had impaired HRQoL and greater fatigue burden. The persistent ITP group showed the largest number of SF-36 scales exceeding the minimally important difference: physical functioning [- 10.5; 95% confidence interval (CI) - 24.5 to 3.5; < 0.001], role physical (- 16.7; 95% CI - 36.4 to 3.0; < 0.001), social functioning (- 15.6; 95% CI - 34.5 to 3.3; < 0.001), and role emotional (- 12.1; 95% CI - 26.0 to 1.8; < 0.001). Chronic ITP patients had the worst FACIT-F scores (36.89 ± 5.21). Higher fatigue severity was associated with lower physical and mental HRQoL. The HRQoL and fatigue burden of Chinese adult patients with ITP vary by disease phase. Persistent ITP patients were the most vulnerable subgroup in terms of HRQoL, while chronic ITP patients bear the heaviest fatigue burden.
描述中国成年免疫性血小板减少症（ITP）患者的健康相关生活质量（HRQoL）和疲劳负担，并确定它们是否随疾病阶段而变化。这是一项针对成年ITP患者和普通人群的横断面、多中心观察性研究。参与者完成了医学结局研究简明健康调查问卷（SF-36）和慢性病治疗功能评估-疲劳量表（FACIT-F）。我们使用倾向得分匹配法，比较了ITP患者与普通人群之间、总体以及按疾病阶段（新诊断、持续性和慢性）划分的HRQoL和疲劳情况。招募了203例患者和269名普通人群成员。36例ITP患者（17.7%）为新诊断，46例（22.7%）为持续性，121例（59.6%）为慢性。与普通人群相比，ITP患者的HRQoL受损且疲劳负担更重。持续性ITP组在SF-36量表中超过最小重要差异的数量最多：身体功能[-10.5；95%置信区间（CI）-24.5至3.5；<0.001]、角色身体功能（-16.7；95%CI -36.4至3.0；<0.001）、社会功能（-15.6；95%CI -34.5至3.3；<0.001）和角色情感功能（-12.1；95%CI -26.0至1.8；<0.001）。慢性ITP患者的FACIT-F得分最差（36.89±5.21）。更高的疲劳严重程度与更低的身体和心理HRQoL相关。中国成年ITP患者的HRQoL和疲劳负担随疾病阶段而异。就HRQoL而言，持续性ITP患者是最脆弱的亚组，而慢性ITP患者的疲劳负担最重。
