Badawy Sherif M, Morrone Kerry, Thompson Alexis, Palermo Tonya M
Paediatrics, Division of Hematology, Oncology and Stem Cell Transplant, Ann & Robert H. Lurie Children's Hospital of Chicago; Northwestern University Feinberg School of Medicine, 225 E. Chicago Avenue, Box #30, Chicago, Illinois, USA, IL 60611.
Cochrane Database Syst Rev. 2019 Jun 28;6(6):CD012900. doi: 10.1002/14651858.CD012900.pub2.
BACKGROUND: Thalassemia syndromes are inherited hemoglobin disorders that result when the synthesis of normal hemoglobin is lacking or significantly reduced. For people with thalassemia, long-term red blood cell transfusion remains the mainstay of therapy, which may lead to iron overload causing severe complications and damage in different body organs. Long-term iron chelation therapy is essential for people with thalassemia to minimize the ongoing iron-loading process. In addition, suboptimal adherence can increase adverse events associated with iron overload and result in increased morbidity, mortality, healthcare utilization and cost of care. OBJECTIVES: To identify and assess the effects of computer and mobile technology interventions designed to facilitate medication adherence and disease management in individuals with thalassemia, including:- evaluating the effects of using computer and mobile technology interventions for medication adherence and disease management on health and behavioral outcomes;- identifying and assessing the effects of computer and mobile technology interventions specific to different age groups (children, adolescents and adults) and type of modality (e.g. cell phone, the Internet). SEARCH METHODS: We searched CENTRAL (the Cochrane Library), MEDLINE, Embase, CINAHL, PsycINFO, ProQuest Dissertations & Theses Global, Psychology and Behavioral Sciences Collection, Web of Science Science & Social Sciences Conference Proceedings Indexes, IEEE Xplore and ongoing trial databases (22 February 2018). We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group's Haemoglobinopathies Trials Register (20 June 2019). We also searched for unpublished work in the abstract book of nine major conferences in the related field. SELECTION CRITERIA: Randomized controlled trials (RCT) and quasi-RCTs comparing single- or multi-component interventions versus no intervention, placebo or standard care, with adherence to iron chelation as the primary outcome were eligible for inclusion. Non-randomized studies of interventions, controlled before-after studies, and interrupted-time-series studies were also eligible for inclusion. DATA COLLECTION AND ANALYSIS: Three authors independently assessed study eligibility. If we had included any studies, we would have independently assessed risk of bias and extracted data; we planned to assess the quality of the evidence using GRADE. MAIN RESULTS: We did not identify any eligible studies for inclusion in the review. AUTHORS' CONCLUSIONS: Due to lack of evidence, we cannot comment on the efficacy or effectiveness of computer and mobile technology intervention strategies to promote disease management and adherence to iron chelation therapy in people with thalassemia.We concluded that RCTs are needed to examine a variety of computer and mobile technology intervention strategies that may be useful for promoting disease management and increasing adherence to iron chelation therapy in individuals with thalassemia.
背景:地中海贫血综合征是遗传性血红蛋白疾病,当正常血红蛋白的合成缺乏或显著减少时就会发生。对于地中海贫血患者,长期红细胞输血仍然是主要的治疗方法,这可能导致铁过载,从而在身体不同器官引发严重并发症并造成损害。长期铁螯合治疗对于地中海贫血患者至关重要,以尽量减少持续的铁负荷过程。此外,依从性欠佳会增加与铁过载相关的不良事件,并导致发病率、死亡率、医疗保健利用率和护理成本上升。 目的:识别和评估旨在促进地中海贫血患者药物依从性和疾病管理的计算机和移动技术干预措施的效果,包括:- 评估使用计算机和移动技术干预措施促进药物依从性和疾病管理对健康和行为结果的影响;- 识别和评估针对不同年龄组(儿童、青少年和成人)以及不同模式类型(如手机、互联网)的计算机和移动技术干预措施的效果。 检索方法:我们检索了考克兰系统评价数据库(Cochrane Library)、医学期刊数据库(MEDLINE)、荷兰医学文摘数据库(Embase)、护理学与健康领域数据库(CINAHL)、心理学文摘数据库(PsycINFO)、ProQuest全球博硕士论文数据库、心理学与行为科学文集、科学引文索引(Web of Science)科学与社会科学会议论文索引、电气与电子工程师协会数据库(IEEE Xplore)以及正在进行的试验数据库(2018年2月22日)。我们检索了考克兰囊性纤维化和遗传疾病组的血红蛋白病试验注册库(2019年6月20日)。我们还在相关领域的九个主要会议的摘要集中搜索了未发表的研究。 选择标准:比较单组分或多组分干预措施与无干预、安慰剂或标准护理,并以铁螯合治疗的依从性作为主要结局的随机对照试验(RCT)和半随机对照试验符合纳入标准。干预措施的非随机研究、前后对照研究以及中断时间序列研究也符合纳入标准。 数据收集与分析:三位作者独立评估研究的合格性。如果我们纳入了任何研究,我们将独立评估偏倚风险并提取数据;我们计划使用GRADE评估证据质量。 主要结果:我们未识别出任何符合纳入综述标准的合格研究。 作者结论:由于缺乏证据,我们无法对计算机和移动技术干预策略在促进地中海贫血患者疾病管理和铁螯合治疗依从性方面的疗效或有效性发表评论。我们得出结论,需要进行随机对照试验来检验各种计算机和移动技术干预策略,这些策略可能有助于促进地中海贫血患者的疾病管理并提高其对铁螯合治疗的依从性。
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