RE-aiming at Hydroxyurea Adherence for Sickle cell with mHealth (RE-HASH)

通过 mHealth 重新瞄准镰状细胞的羟基脲依从性 (RE-HASH)

• 批准号: 10197192
• 负责人: Jane Silva Hankins
• 金额: $ 63.84万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-08 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10197192
• 关键词: Address; Adherence; Adolescent; Adopted; Adoption; Adult; Age; American; Attention; Benefits and Risks; Caring; Cellular Phone; Child; Chronic Disease; Clinical; Cohort Studies; Collaborations; Communities; Continuity of Patient Care; Country; Data; Ensure; Event; Family; Fetal Hemoglobin; Fostering; Funding; Future; Genotype; Geographic Locations; Geography; Goals; Health; Health Care Costs; Health Technology; Health system; Home; Hospitalization; Individual; Intervention; Interview; Laboratories; Link; Measures; Medicaid; Medical; Medical Care Costs; Medical center; Medicare; Medicine; Modeling; Oral; Outcome; Participant; Patient Preferences; Patients; Penetration; Perception; Pharmaceutical Preparations; Pharmacy facility; Phase; Phenotype; Population; Populations at Risk; Provider; Qualitative Evaluations; Quality of life; Randomized; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Regimen; Sampling; Self Efficacy; Sickle Cell; Sickle Cell Anemia; System; Testing; Text Messaging; Transfusion; Work; arm; base; behavioral adherence; clinical effect; cohort; community clinic; cost; data format; design; evidence base; formative assessment; handheld mobile device; health care service utilization; health literacy; health related quality of life; hydroxyurea; implementation cost; implementation science; improved; innovation; instrument; mHealth; mean corpuscular volume observed; medication compliance; mobile computing; modifiable behavior; patient oriented; patient stratification; patient-level barriers; patient/disease registry; preference; provider-level barriers; sociodemographics; standard of care; system-level barriers

PROJECT SUMMARY Hydroxyurea is a once-a-day oral medication that reduces hospitalizations, transfusions, and medical care costs among patients with sickle cell disease (SCD). Despite these positive benefits, hydroxyurea is not widely used, which reduces the clinical benefits of the drug. The main factors include misperceptions by patients and providers regarding the risks and benefits of hydroxyurea and patients’difficulty in remembering to take the medication. Our long-term goal is to foster increased use of hydroxyurea among patients with SCD through the use of mobile technology. Our initial approach in Aim 1 is to fully understand all factors influencing the initiation or continuation of hydroxyurea therapy by patients, families, and providers. For this, we will interview patients, families, providers, and analyze Medicaid, Medicare, and commercial payer data. We will link the data from the medical system (payer data), with that of individuals, families, and providers. We will identify the reasons hydroxyurea is started and continued. Next, in Aim 2, we will develop and test a new cellular phone text messaging application that will help patients stay on hydroxyurea. We will seek input from patients inquiring about their preferences and perceptions of useful features of a new text messaging application. We will then test this new text messaging application in a group of adolescents and adults in Memphis. We will pay particular attention to how providers and patients see the importance of this intervention and how well it works to improve the effect of HU treatment, such as, improvement of laboratory measures, quality of life. We will then further improve the application based on these initial results. Lastly, in Aim 3, we will expand the testing of this new text messaging application in a large randomized study of patients in different geographical areas of the country. We will study how well it is adopted by patients and providers, how much it changed the patients’ perception regarding the difficulties in taking their medication, its costs, and how well it worked to increase HU clinical benefits. Throughout our study, we will use the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) implementation science model to help us measure the large-scale impact of text messaging in the treatment of patients with SCD with hydroxyurea. Ultimately, it is the goal of this project to provide evidence for an effective, low cost, and accessible mobile health technology (cellular phone text messaging) that will lead to better usage of hydroxyurea and improvement of overall health outcomes of individuals living with SCD.

项目摘要 羟基脲是一种每日一次的口服药物，可减少住院、输血和医疗护理 镰状细胞病（SCD）患者的费用。尽管有这些积极的好处，但羟基脲并不广泛应用于临床。 使用，这降低了药物的临床益处。主要因素包括患者的误解， 提供者关于羟基脲的风险和益处以及患者难以记住服用 药我们的长期目标是通过以下途径促进SCD患者中羟基脲的使用增加： 使用移动的技术。我们在目标1中的初步方法是充分了解影响启动的所有因素 或由患者、家属和提供者继续进行羟基脲治疗。为此，我们将采访病人， 家庭、医疗服务提供者，并分析医疗补助、医疗保险和商业付款人数据。我们将把来自 医疗系统（付款人数据），与个人，家庭和供应商。我们将找出原因 开始并继续使用羟基脲。接下来，在目标2中，我们将开发和测试一种新的手机文本 消息应用程序，这将有助于患者继续使用羟基脲。我们将寻求病人的意见， 关于他们对新的文本消息应用程序的有用功能的偏好和看法。然后我们将 在孟菲斯的一群青少年和成年人中测试这种新的短信应用程序。本公司将 特别关注提供者和患者如何看待这种干预的重要性以及它的效果如何 提高HU治疗效果，如改善实验室指标、生活质量等。我们将 然后根据这些初步的结果进一步完善应用程序。最后，在目标3中，我们将扩展以下测试： 在一项针对不同地理区域患者的大型随机研究中， 全国我们将研究患者和提供者对它的接受程度，它在多大程度上改变了患者的 关于服用药物的困难，其成本以及如何提高HU的看法 临床获益。在整个研究过程中，我们将使用RE-AIM（覆盖率、有效性、采用率， 实施和维护）实施科学模型，以帮助我们衡量大规模的影响， 短信治疗SCD患者的研究最终，这个项目的目标是 为有效、低成本和可访问的移动的卫生技术提供证据（手机文本 消息），这将导致更好地使用羟基脲和改善整体健康结果， 患有SCD的人。

项目成果

Gene therapy in sickle cell disease: Attitudes and informational needs of patients and caregivers.

镰状细胞病的基因治疗：患者和护理人员的态度和信息需求。

• DOI: 10.1002/pbc.30319
• 发表时间: 2023
• 期刊: Pediatric blood & cancer
• 影响因子: 3.2
• 作者: Sharma,Akshay;Young,Amanda;Carroll,Yvonne;Darji,Himani;Li,Yimei;Mandrell,BelindaN;Nelson,MarquitaN;Owens,CurtisL;Irvine,Mary;Caples,Mary;Jerkins,LaurenP;Unguru,Yoram;Hankins,JaneS;Johnson,Liza-Marie
• 通讯作者: Johnson,Liza-Marie

Perspectives of individuals with sickle cell disease on barriers to care.

• DOI: 10.1371/journal.pone.0265342
• 发表时间: 2022
• 期刊: PloS one
• 影响因子: 3.7
• 作者: Phillips S;Chen Y;Masese R;Noisette L;Jordan K;Jacobs S;Hsu LL;Melvin CL;Treadwell M;Shah N;Tanabe P;Kanter J
• 通讯作者: Kanter J

Sickle cell disease and ventricular myocardial strain: A systematic review.

• DOI: 10.1002/pbc.28973
• 发表时间: 2021-06
• 期刊: Pediatric blood & cancer
• 影响因子: 3.2