Intervention to Improve Quality of life for African-AmericaN lupus patients (IQAN): study protocol for a randomized controlled trial of a unique a la carte intervention approach to self-management of lupus in African Americans.
Intervention to Improve Quality of life for African-AmericaN lupus patients (IQAN): study protocol for a randomized controlled trial of a unique a la carte intervention approach to self-management of lupus in African Americans.
复制标题
干预措施改善非裔美国人狼疮患者（IQAN）的生活质量：对非裔美国人狼疮自我管理的独特对照试验的随机对照试验的研究方案。
DOI：
10.1186/s12913-016-1580-6
复制
发表时间：
2016-08-02
影响因子：
2.8
通讯作者：
Oates JC
中科院分区：
文献类型：
--
作者：
Williams EM;Lorig K;Glover S;Kamen D;Back S;Merchant A;Zhang J;Oates JC
系统性红斑狼疮（狼疮）是一种慢性自身免疫性疾病，可以影响任何器官系统并导致危及生命的并发症。非裔美国人狼疮发病和死亡的风险增加。自我管理计划已证明狼疮患者的健康困扰、自我报告的整体健康状况和活动限制有显着改善。尽管有好处，但关节炎自我管理教育只覆盖到了有限的人。自选节目可以改善这种趋势。本研究的目的是测试一种新的干预措施，以改善南卡罗来纳州非裔美国狼疮患者的生活质量，减少抑郁指标，并减少压力的感知和生物指标。在一项三组随机、等候名单对照试验中，我们将评估以患者为中心的“点菜”方法的有效性，该方法为受试者提供多种互动模式，与“固定菜单”方法和常规护理相比，他们可以从中选择任意数量或数量。这项独特的“点菜式”自我管理计划将向参与南卡罗来纳医科大学基于网络的纵向观察 SLE 数据库的 50 名非裔美国狼疮患者提供。每个个性化干预计划将包括 1-4 个选项，包括邮寄关节炎套件、添加和访问在线留言板、参与支持小组以及参加当地自我管理计划。由 50 名狼疮患者组成的“套餐”对照组将仅接受标准化慢性病自我管理计划，而由 50 名狼疮患者组成的对照组将接受常规护理。结果将包括 (a) 健康行为、(b) 健康状况、(c) 医疗保健利用和 (d) 生物标志物（尿儿茶酚胺）的变化。这种文化敏感的教育干预措施包括自我选择项目组成部分，有可能改善非裔美国狼疮患者的生活质量、疾病活动、抑郁和压力方面的不同趋势，因为当参与者能够选择/决定各自治疗/干预项目的内容和/或节奏时，已经记录了更好的结果。由于目前还没有专门针对狼疮的“黄金标准”自我管理计划，因此该项目可能会对未来的研究和政策决策产生相当大的影响。 NCT01837875； 2013 年 4 月 18 日
Systemic Lupus Erythematosus (lupus) is a chronic autoimmune disease that can impact any organ system and result in life-threatening complications. African-Americans are at increased risk for morbidity and mortality from lupus. Self-management programs have demonstrated significant improvements in health distress, self-reported global health, and activity limitation among people with lupus. Despite benefits, arthritis self-management education has reached only a limited number of people. Self-selection of program could improve such trends. The aim of the current study is to test a novel intervention to improve quality of life, decrease indicators of depression, and reduce perceived and biological indicators of stress in African-American lupus patients in South Carolina. In a three armed randomized, wait list controlled trial, we will evaluate the effectiveness of a patient-centered ‘a–la-carte’ approach that offers subjects a variety of modes of interaction from which they can choose as many or few as they wish, compared to a ‘set menu’ approach and usual care. This unique ‘a-la-carte’ self-management program will be offered to 50 African-American lupus patients participating in a longitudinal observational web-based SLE Database at the Medical University of South Carolina. Each individualized intervention plan will include 1–4 options, including a mail-delivered arthritis kit, addition and access to an online message board, participation in a support group, and enrollment in a local self-management program. A ‘set menu’ control group of 50 lupus patients will be offered a standardized chronic disease self-management program only, and a control group of 50 lupus patients will receive usual care. Outcomes will include changes in (a) health behaviors, (b) health status, (c) health care utilization, and (d) biological markers (urinary catecholamines). Such a culturally sensitive educational intervention which includes self-selection of program components has the potential to improve disparate trends in quality of life, disease activity, depression, and stress among African-American lupus patients, as better outcomes have been documented when participants are able to choose/dictate the content and/or pace of the respective treatment/intervention program. Since there is currently no “gold standard” self-management program specifically for lupus, this project may have a considerable impact on future research and policy decisions. NCT01837875; April 18, 2013