Fatigue, symptom burden, and health-related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria
Fatigue, symptom burden, and health-related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria
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DOI：
10.1002/cam4.1953
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发表时间：
2019-02-01
期刊：
影响因子：
4
通讯作者：
Garcia-Manero, Guillermo
中科院分区：
文献类型：
--
作者：
Escalante, Carmen P.;Chisolm, Stephanie;Garcia-Manero, Guillermo
背景疲劳是骨髓增生异常综合征（MDS）、再生障碍性贫血（AA）和阵发性睡眠性血红蛋白尿症（PNH）患者的痛苦和生活质量（QoL）的影响因素。关于这些患者的疲劳、生活质量和相关症状的影响的数据有限。目的评估MDS、AA和PNH患者的疲劳（癌症治疗功能评估-贫血[FACT-An]）、QoL（FACT-An子量表）、疼痛（简明疼痛量表）和抑郁、焦虑和压力（抑郁焦虑压力量表-21）以及用于管理这些症状的策略。方法通过AA和MDS国际基金会网站和数据库进行调查，从2014年10月到2015年4月进行横断面研究。使用描述性统计量总结结果。结果303例患者中，MDS 145例（48%），AA 84例（28%），PNH 74例（24%）; 31例（10%）有1个以上诊断。平均年龄为57岁，200例（66%）为女性，195例（92%）为白色。整个队列的平均疲劳评分为25（范围1-52），AA为28，MDS为25，PNH为24（P = 0.117）;这些均被视为重度水平。整个队列的平均QoL评分为68（范围10-104），AA为67，MDS为69，PNH为67（P = 0.821）。压力的范围是正常的;疼痛和抑郁，轻度;焦虑，中度。在过去的一个月里，被认为有助于缓解疲劳的最常见的管理策略是保持精力、体力活动和小睡。结论MDS、AA和PNH患者多有严重疲劳症状。疲劳管理策略的有效性可能会影响患者的持续使用;这些策略是否有益并降低疲劳水平需要进一步研究。
Background Fatigue is distressing and affects quality of life (QoL) among patients with myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH). Limited data exist on the impact of fatigue, QoL, and related symptoms in these patients. Objective Prospectively assess fatigue (functional assessment of cancer therapy-anemia [FACT-An]); QoL (FACT-An subscales); pain (brief pain inventory); and depression, anxiety, and stress (depression anxiety stress scale-21) and strategies used to manage these symptoms in patients with MDS, AA, and PNH. Methods Surveys were administered via the AA and MDS International Foundation website and database from October 2014 through April 2015 in a cross-sectional study. Results were summarized using descriptive statistics. Results Of 303 patients, 145 (48%) had MDS, 84 (28%) had AA, and 74 (24%) had PNH; 31 (10%) had >1 diagnosis. The mean age was 57 years, 200 (66%) were female, and 195 (92%) were white. The mean fatigue scores were 25 (range 1-52) for the whole cohort, 28 for AA, 25 for MDS, and 24 for PNH (P = 0.117); these are all considered severe level. The mean QoL score was 68 (range 10-104) for the whole cohort, 67 for AA, 69 for MDS, and 67 for PNH (P = 0.821). The ranges for stress were normal; pain and depression, mild; and anxiety, moderate. The most common management strategies perceived as helpful for fatigue in the past month were preserving energy, physical activity, and naps. Conclusions Many patients with MDS, AA, and PNH report severe fatigue. The helpfulness of fatigue management strategies may impact patients' continued use; whether these strategies are beneficial and decrease fatigue levels needs more study.