Self-Management Assistance for Recommended Treatment (SMART) Portal

建议治疗的自我管理协助 (SMART) 门户

• 批准号: 8578144
• 负责人: Kevin Hommel
• 金额: $ 26.78万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-07-05 至 2015-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8578144
• 关键词: Address; Adherence; Adolescence; Adolescent; Adult; Advisory Committees; Algorithms; Area; Behavior; Behavior Therapy; Belief; Biometry; Childhood; Chronic; Chronic Disease; Clinic; Clinic Visits; Clinical Research; Collaborations; Communities; Data; Development; Disease; Dose; Educational process of instructing; Effectiveness; Failure; Family; Feces; Feedback; Foundations; Funding; Future; Goals; Health; Health Care Costs; Health Services Accessibility; Healthcare; Home environment; Hospitals; Inflammatory Bowel Diseases; Internet; Intervention; Intervention Studies; Measurement; Modeling; Modification; Monitor; Online Systems; Outcome; Pain; Parents; Patients; Pharmaceutical Preparations; Population; Positioning Attribute; Problem Solving; Process; Public Health; Qualifying; Recommendation; Relapse; Research; Research Infrastructure; Resources; Risk; Self Management; Social Network; System; Technology; Testing; Time; Training; Translations; Treatment Efficacy; Treatment Protocols; Treatment outcome; United States National Institutes of Health; Work; base; clinical care; comparative effectiveness; cost; data management; design; economic impact; effectiveness research; evidence base; experience; forgetting; health economics; innovation; patient population; programs; prototype; public health relevance; satisfaction; skills; skills training; tool; treatment adherence; usability; web site; web-enabled

DESCRIPTION (provided by applicant): Poor disease self-management is a significant issue in pediatric IBD, with up to 88% of adolescent's non adherent to medication. Self-management is a significant concern given that 1) the risk of relapse in IBD is 5.5 times greater in non adherent patients than in adherent patients, 2) the annual costs of health care in non adherent IBD patients are 12.5% higher, and 3) the estimated annual cost of no adherence in US health care is $100-300 billion. We have identified numerous factors that interfere with adolescents' ability to adhere to treatment including treatment burden, forgetting, negative beliefs about treatment efficacy, and lack of parental support/monitoring. Although these barriers are amenable to behavioral intervention, many adolescents lack the self-management skills to overcome them on their own, and clinic-based self- management efforts have proven inadequate. Through our intervention research in pediatric IBD, we have developed and demonstrated the efficacy of a multi-component self-management intervention. However, the proportion of the IBD population that could receive this type of treatment is restricted due to limited access (e.g., lack of available trained clinicians, distance between patient homes and treatment facility). These accessibility barriers could be overcome, however, with the development of a web-based self-management portal designed to assess barriers and deliver interventions. Preliminary portal efficacy has been demonstrated in adult populations. However, the lack of a guiding theoretical framework and a failure to engage patients and clinicians during portal development has led to an underutilization of this technology. Additionally, given that the conceptual framework in which pediatric chronic illness is managed (i.e., collaboration between patients, parents, and clinicians) and issues salient to self-management in adolescence (e.g., treatment responsibility) differ significantly from adults, it would be inappropriate to apply existing adult portals to pediatric patients. Development of the first IBD-specific self-management portal that can be used by key stakeholders would be a critical advancement in this line of research. Adolescents are the ideal consumers of web portals as they are early adopters and frequent users of technology. The proposed project aims to develop and optimize the Self- Management Assistance for Recommended Treatment (SMART) portal to address the self-management needs of patients, parents, and clinicians. We will do this via an iterative process with repeated input from each group of users. This will impact public health by providing an evidence-based resource to a large proportion of patients who otherwise would not receive treatment, thereby reducing health care disparities for families that have limited access to services. Given the health and economic impact of poor self-management in IBD, this study is timely and important, as it has the potential to positively impact IBD health outcomes, and serve as a model for self-management intervention in other pediatric populations.

描述（由申请人提供）：疾病自我管理不良是儿科 IBD 的一个重要问题，高达 88% 的青少年不坚持服药。自我管理是一个重要问题，因为 1) 不依从性 IBD 患者的 IBD 复发风险比依从性患者高 5.5 倍，2) 不依从性 IBD 患者的年度医疗费用高出 12.5%，以及 3 ）在美国，不遵守医疗保健规定每年造成的损失估计为 100-3000 亿美元。我们已经确定了许多干扰青少年坚持治疗能力的因素，包括治疗负担、遗忘、对治疗效果的消极信念以及缺乏父母支持/监督。尽管这些障碍可以通过行为干预来解决，但许多青少年缺乏自行克服这些障碍的自我管理技能，而基于临床的自我管理努力已被证明是不够的。通过对儿科 IBD 的干预研究，我们开发并证明了多成分自我管理干预措施的有效性。然而，由于获取机会有限（例如缺乏经过培训的临床医生、患者家与治疗机构之间的距离），能够接受此类治疗的 IBD 人群比例受到限制。然而，通过开发旨在评估障碍并提供干预措施的基于网络的自我管理门户，这些可访问性障碍可以被克服。初步的门户功效已在成年人群中得到证实。然而，缺乏指导性理论框架以及在门户开发过程中未能吸引患者和临床医生的参与，导致该技术的利用不足。此外，鉴于儿科慢性病管理的概念框架（即患者、家长和临床医生之间的合作）以及青春期自我管理的突出问题（例如治疗责任）与成人显着不同，因此这是不合适的将现有的成人门户应用于儿科患者。开发第一个可供主要利益相关者使用的 IBD 特定自我管理门户将是这一研究领域的关键进步。青少年是门户网站的理想消费者，因为他们是技术的早期采用者和频繁用户。拟议项目旨在开发和优化推荐治疗自我管理援助 (SMART) 门户，以满足患者、家长和临床医生的自我管理需求。我们将通过每组用户的重复输入的迭代过程来实现这一点。这将为大部分无法接受治疗的患者提供基于证据的资源，从而影响公共健康，从而减少获得服务机会有限的家庭的医疗保健差距。鉴于 IBD 自我管理不良对健康和经济的影响，这项研究是及时且重要的，因为它有可能对 IBD 健康结果产生积极影响，并可作为其他儿科人群自我管理干预的模型。