Using Patient-Centered Guidelines in a Technology Platform to Improve Health Care in Adults with Sickle Cell Disease

在技​​术平台中使用以患者为中心的指南来改善镰状细胞病成人的医疗保健

• 批准号: 10453557
• 负责人: Robert M Cronin
• 金额: $ 18.12万
• 依托单位: OHIO STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-06-01 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10453557
• 关键词: Academic Medical Centers; Acute; Adherence; Adolescent; Adoption; Adult; Affect; Age; American; Americas; Award; Car Phone; Caring; Child; Childhood; Chronic Disease; Clinic; Clinical; Clinical Sciences; Collaborations; Communities; Development Plans; Disease; Disease Management; Educational Materials; Emergency department visit; Ensure; Expenditure; Family; Feedback; Focus Groups; Foundations; Future; Geography; Goals; Guidelines; Health; Health Expenditures; Health Personnel; Health Technology; Healthcare; Hematological Disease; Hematology; Hemoglobin; Hereditary Disease; Individual; Inherited; Internal Medicine; International; Intervention; Interview; Investigation; K-Series Research Career Programs; Knowledge; Letters; Life; Life Expectancy; Longevity; Measures; Mentors; Mobile Health Application; National Heart, Lung, and Blood Institute; Neighborhoods; Online Systems; Outcome; Paper; Parents; Participant; Patient-Centered Care; Patients; Pattern; Pediatric Hospitals; Physicians; Pilot Projects; Population; Preparation; Principal Investigator; Process; Public Health Informatics; Publishing; Qualitative Methods; Regulation; Research; Research Personnel; Resources; Risk; Schools; Self Efficacy; Sickle Cell; Sickle Cell Anemia; Site; Stroke; Surveys; Technology; Tennessee; Testing; Time; Underserved Population; United States; Update; Visit; Work; acceptability and feasibility; acute care; base; career; career development; cell community; clinical care; design; efficacy evaluation; evidence base; evidence based guidelines; experience; health care availability; health care disparity; health care service utilization; health information technology; improved; interest; medical complication; meetings; member; mobile computing; new technology; patient engagement; patient oriented; preference; programs; recruit; research and development; secondary analysis; secondary outcome; skills; social disadvantage; tool; usability; user centered design

The overall goal of this proposal is to prepare the principal investigator (PI) to become an independent investigator with the career goal of developing health information technologies (Health IT) to improve disease- specific knowledge in individuals with sickle cell disease (SCD). SCD is an inherited disorder of hemoglobin that affects over 100,000 Americans, most of whom live in low-resourced neighborhoods. Acute SCD complications result in 230,000 emergency department visits and $1.5 billion annually in acute-care expenditures. Prior research indicates that increased disease-specific knowledge correlates with improved clinical outcomes in SCD. Thus, targeting strategies to improve disease-specific knowledge is a high priority in the care of individuals with SCD. Significant evidence describes how educational materials, including online educational programs, can be used to increase disease-specific knowledge. In this proposal, the PI will develop and evaluate a mobile phone technology intervention based on the prior evidence that technologies can improve SCD-specific knowledge. The PI proposes a career development plan that includes a mentored research experience with internationally recognized mentors with expertise in SCD, qualitative methods, consumer health informatics, and user-centered design. The PI has done the following in preparation for this application: (1) attended pediatric and adult hematology clinics at the Vanderbilt University Medical Center; (2) partnered with the Sickle Cell Foundation of Tennessee and Sickle Cell Disease Association of America, our local and national community based organizations to obtain input from adults with SCD about knowledge gaps in their disease and to provide feedback about technology; (3) adapted 2014 NHLBI guidelines to be patient- centered, understandable, and actionable based on input from the community; and (4) initiated a collaboration with Cincinnati Children’s Hospital, developers of iManage, a mobile health application (mHealth app) designed for individuals with SCD. The goal of this collaboration is incorporating the patient-centered version of the 2014 NHLBI guidelines into the app. The PI is a pediatric and internal medicine board certified physician and biomedical informatician, with expertise in developing and evaluating Health IT applications across the life span. This proposal describes a career development plan and research strategy in which the PI will gain new and complementary skills, knowledge, and experience to become a leader in developing and evaluating Health IT applications to be patient-centered and patient-driven to improve disease-specific knowledge in SCD. The specific aims are to: (1) adapt iManage, an mHealth app with guidelines, for adults with SCD; and (2) evaluate the adoption, usage, and usability of iManage, and (3) determine the improvement in disease-specific knowledge in adults with SCD. Ultimately, the newly acquired skills developed in this mentored award will be applied to the continuous process of ensuring that updated evidence-based strategies for SCD management will be patient-driven, patient-centered, and accessible via current and future technologies for adults with SCD.

该提案的总体目标是让首席研究员 (PI) 成为一名独立的研究者 研究者的职业目标是开发健康信息技术（Health IT）以改善疾病- 镰状细胞病 (SCD) 患者的具体知识 SCD 是一种血红蛋白遗传性疾病。 影响超过 100,000 名美国人，其中大多数生活在资源匮乏的社区。 并发症每年导致 230,000 次急诊就诊，并导致每年 15 亿美元的急症护理费用 先前的研究表明，增加特定疾病的知识与改善相关。 因此，提高疾病特异性知识的针对性策略是 SCD 的重中之重。 重要证据描述了教育材料（包括在线材料）的护理方式。 在此提案中，PI 将用于增加特定疾病的知识。 根据技术的先前证据开发和评估移动电话技术干预措施 可以提高 SCD 特定知识 PI 提出职业发展计划，其中包括受指导的人员。 与国际公认的导师一起研究经验，他们在 SCD、定性方法、 消费者健康信息学和以用户为中心的设计为此做了以下准备。 申请：（1）在范德比尔特大学医学中心的儿科和成人血液科门诊就诊；（2） 与田纳西州镰状细胞基金会和美国镰状细胞病协会合作，我们 地方和国家社区组织从患有 SCD 的成年人那里获取有关知识差距的意见 (3) 调整 2014 年 NHLBI 指南以适应患者- 基于社区的意见，具有中心性、可理解性和可操作性；(4) 发起协作； 与辛辛那提儿童医院 (Cincinnati Children’s Hospital) 合作开发了 iManage，这是一款移动健康应用程序（mHealth 应用程序） 此次合作的目标是纳入 2014 年以患者为中心的版本。 该应用程序中包含 NHLBI 指南。 PI 是经过儿科和内科委员会认证的医生，并且 生物医学信息学家，拥有开发和评估生命周期健康 IT 应用程序的专业知识 该提案描述了 PI 将获得新的职业发展计划和研究策略。 以及互补的技能、知识和经验，成为开发和评估健康领域的领导者 IT 应用以患者为中心、以患者为驱动，以提高 SCD 的特定疾病知识。 具体目标是：(1) 为患有 SCD 的成人调整 iManage，这是一款带有指南的移动医疗应用程序；(2) 进行评估； iManage 的采用、使用和可用性，以及 (3) 确定特定疾病的改善情况 最终，在这个指导奖项中开发的新技能将是患有 SCD 的成人的知识。 应用于确保更新的基于证据的 SCD 管理策略的持续过程 将以患者为导向、以患者为中心，并通过当前和未来的技术为患有 SCD 的成人提供服务。

项目成果

Increased Patient Activation Is Associated with Fewer Emergency Room Visits and Hospitalizations for Pain in Adults with Sickle Cell Disease.

患者活性的增加与镰状细胞病成人患者因疼痛而去急诊室和住院的次数减少有关。

• 发表时间: 2019
• 作者: Cronin, Robert M;Dorner, Tim Lucas;Utrankar, Amol;Allen, Whitney;Rodeghier, Mark;Kassim, Adetola A;Jackson, Gretchen Purcell;DeBaun, Michael R
• 通讯作者: DeBaun, Michael R

A feasibility randomized controlled trial of an mHealth app vs booklets for patient-facing guidelines in adults with SCD.

一项针对成人 SCD 患者的 mHealth 应用程序与小册子的可行性随机对照试验，以提供面向患者的指南。

• 发表时间: 2023-10-24
• 影响因子: 7.5
• 作者: Cronin, Robert M;Quaye, Nives;Liu, Xin;Landes, Kristina;Crosby, Lori E;Kassim, Adetola A;Volanakis, Emmanuel J;Schnell, Patrick M;DeBaun, Michael R
• 通讯作者: DeBaun, Michael R

Patient and healthcare provider views on a patient-reported outcomes portal.

患者和医疗保健提供者在患者报告的结果门户上查看。

• 发表时间: 2018-11-01
• 作者: Cronin, Robert M;Conway, Douglas;Condon, David;Jerome, Rebecca N;Byrne, Daniel W;Harris, Paul A
• 通讯作者: Harris, Paul A

Annual decline in lung function in adults with sickle cell disease is similar to that observed in adults with cystic fibrosis.

镰状细胞病成人患者肺功能的每年下降与囊性纤维化成人中观察到的情况相似。

• 发表时间: 2022-03-22
• 影响因子: 7.5
• 作者: Hodges, Brock;Ivy, Zalaya;Cronin, Robert M;Rodeghier, Mark;DeBaun, Michael R;Willen, Shaina M
• 通讯作者: Willen, Shaina M

Burden of employment loss and absenteeism in adults and caregivers of children with sickle cell disease.

患有镰状细胞病的成年人和儿童的照顾者面临失业和缺勤的负担。

• 发表时间: 2024-03-12
• 影响因子: 7.5
• 作者: Gordon, Rachel D'Amico;Welkie, Rina Li;Quaye, Nives;Hankins, Jane S;Kassim, Adetola A;Thompson, Alexis A;Treadwell, Marsha;Lin, Chyongchiou J;Cronin, Robert M
• 通讯作者: Cronin, Robert M