Berti Dana, Moons Philip, Dobbels Fabienne, Deuson Robert, Janssens Ann, De Geest Sabina
Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Leuven, Belgium.
Clin Ther. 2008 Aug;30(8):1540-52. doi: 10.1016/j.clinthera.2008.08.005.
Corticosteroid (CS) therapy is effective in many patients with immune thrombocytopenic purpura (ITP), although it is associated with adverse effects.
This study was conducted to describe the CS-related symptom experience of adult patients with ITP and to compare the symptom experience of current users of CS, previous users of CS, and those who have never used CS.
In 2006, adult members of the Platelet Disorder Support Association (PDSA) who were listed in the organization's database, resided in the United States, and had a diagnosis of ITP were invited to participate in a Web-based survey. Symptom experience was assessed using 33 CS-related symptoms derived from a scale developed for use in patients undergoing organ transplantation. Symptom experience over the past 4 weeks was measured in terms of the occurrence of symptoms (rated on a 5-point scale from 1 [never occurring] to 5 [always occurring]) and the distress associated with those symptoms (rated on a 5-point Likert scale from 0 [not at all distressing] to 4 [extremely distressing]). Respondents were categorized according to 4 patterns of CS use: current users, nonusers, previous users who stopped CS use <6 months earlier, and previous users who stopped CS use >or=6 months earlier.
The survey was completed by 985 patients with ITP (8.2% of the PDSA membership). The median age of the sample was 47 years, and the ratio of women to men was 3:1. One hundred sixteen patients (11.8%) were current CS users, 171 (17.4%) were nonusers, 99 (10.1%) had stopped CS use <6 months earlier, and 599 (60.8%) had stopped CS use >or=6 months earlier. In all 4 groups, back pain, fatigue, sleep difficulties, muscle weakness, and difficulty seeing well were reported to be the most frequently occurring and most distressing symptoms. Current CS users and those who stopped CS treatment <6 months earlier also reported bruises to be among their most frequent and distressing symptoms. Twenty-five of the 33 symptoms occurred more frequently in current CS users than in nonusers, and 30 symptoms occurred more frequently in current users than in previous users who had stopped CS use >or=6 months earlier. Symptom occurrence was significantly greater for current users compared with those who stopped CS use <6 months earlier for puffy face (q = 0.003), excessive appetite (q = 0.002), changed facial features (q = 0.033), and buffalo hump (q = 0.048). Patients who had stopped CS use <6 months earlier reported 20 of the 33 symptoms significantly more often than those who had stopped CS use >or=6 months earlier (q < 0.05). The only symptoms reported significantly more often in patients who had stopped CS use >or=6 months earlier compared with nonusers were buffalo hump and bruises (q < 0.05). The distress associated with bruises was significantly higher in current users compared with nonusers and compared with previous users who had stopped CS use >or=6 months earlier (both, q = 0.047). Current users also reported significantly greater distress than nonusers for puffy face and excessive appetite (both, q = 0.047). Changed facial features was significantly more distressing in current users compared with those who had stopped CS use >or=6 months earlier (q = 0.047).
Different symptom profiles emerged based on the pattern of CS use. Patients who were currently using CS or who had stopped CS treatment <6 months earlier reported more symptoms than did patients who had never received CS or who had stopped CS treatment =6 months earlier.
皮质类固醇(CS)疗法对许多免疫性血小板减少性紫癜(ITP)患者有效,尽管它会带来不良反应。
本研究旨在描述成年ITP患者与CS相关的症状体验,并比较当前使用CS的患者、既往使用过CS的患者以及从未使用过CS的患者的症状体验。
2006年,邀请血小板疾病支持协会(PDSA)数据库中登记的、居住在美国且诊断为ITP的成年会员参与一项基于网络的调查。使用从为器官移植患者开发的量表中得出的33种与CS相关的症状来评估症状体验。通过症状的发生情况(按从1[从未发生]到5[总是发生]的5分制评分)以及与这些症状相关的困扰程度(按从0[完全不困扰]到4[极其困扰]的5点李克特量表评分)来衡量过去4周内的症状体验。受访者根据4种CS使用模式进行分类:当前使用者、未使用者、在<6个月前停止使用CS的既往使用者以及在≥6个月前停止使用CS的既往使用者。
985例ITP患者(占PDSA会员的8.2%)完成了调查。样本的中位年龄为47岁,女性与男性的比例为3:1。116例患者(11.8%)为当前CS使用者,171例(17.4%)为未使用者,99例(10.1%)在<6个月前停止使用CS,599例(60.8%)在≥6个月前停止使用CS。在所有4组中,背痛、疲劳、睡眠困难、肌肉无力和视力模糊被报告为最常出现且最困扰的症状。当前CS使用者和在<6个月前停止CS治疗的患者还报告瘀伤是他们最常出现且最困扰的症状之一。33种症状中有25种在当前CS使用者中比在未使用者中更频繁出现,30种症状在当前使用者中比在≥6个月前停止使用CS的既往使用者中更频繁出现。与在<6个月前停止使用CS的患者相比,当前使用者在面部浮肿(q = 0.003)、食欲亢进(q = 0.002)、面部特征改变(q = 0.033)和水牛背(q = 0.048)方面的症状发生率显著更高。在<6个月前停止使用CS的患者报告33种症状中的20种比在≥6个月前停止使用CS的患者更频繁(q < 0.05)。与未使用者相比,在≥6个月前停止使用CS的患者报告显著更频繁出现的唯一症状是水牛背和瘀伤(q < 0.05)。与未使用者以及与≥6个月前停止使用CS的既往使用者相比,当前使用者中与瘀伤相关的困扰程度显著更高(两者均为q = 0.047)。当前使用者在面部浮肿和食欲亢进方面报告的困扰程度也显著高于未使用者(两者均为q = 0.047)。与≥6个月前停止使用CS的患者相比,当前使用者中面部特征改变的困扰程度显著更高(q = 0.047)。
根据CS使用模式出现了不同的症状特征。当前正在使用CS或在<6个月前停止CS治疗的患者比从未接受过CS治疗或在≥6个月前停止CS治疗的患者报告的症状更多。