Self-Management Assistance for Recommended Treatment (SMART) Portal

描述(申请人提供)：糟糕的疾病自我管理是儿童IBD的一个重要问题，高达88%的青少年不遵守药物治疗。自我管理是一个重要的问题，因为1)非依从性IBD患者的复发风险是粘附性患者的5.5倍，2)非粘附性IBD患者的年医疗费用高出12.5%，以及3)美国医疗保健不坚持的年成本估计为1,000-3,000亿美元。我们发现了许多干扰青少年坚持治疗能力的因素，包括治疗负担、健忘、对治疗效果的负面看法以及缺乏父母的支持/监督。尽管这些障碍可以接受行为干预，但许多青少年缺乏独立克服这些障碍的自我管理技能，而基于诊所的自我管理努力已被证明是不够的。通过我们对儿童IBD的干预研究，我们已经开发并展示了多成分自我管理干预的有效性。然而，由于可获得的机会有限(例如，缺乏训练有素的临床医生，患者家庭和治疗设施之间的距离)，IBD人口中可以接受这种类型治疗的比例受到限制。然而，通过开发一个旨在评估障碍和提供干预措施的基于网络的自我管理门户，这些无障碍是可以克服的。初步的门户疗效已在成人人群中得到证实。然而，缺乏指导性的理论框架，以及在门户开发过程中未能让患者和临床医生参与进来，导致了这项技术的未充分利用。此外，鉴于儿童慢性病管理的概念框架(即患者、父母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)与成人显著不同，将现有的成人门户应用于儿童患者是不合适的。开发第一个可供主要利益攸关方使用的针对IBD的自我管理门户网站将是这一研究领域的关键进展。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。拟议的项目旨在开发和优化推荐治疗的自我管理援助(SMART)门户网站，以满足患者、父母和临床医生的自我管理需求。我们将通过迭代过程来实现这一点，每个用户组都会重复输入。这将影响公共卫生，因为它将为大部分原本不会接受治疗的患者提供循证资源，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，这项研究是及时和重要的，因为它有可能对IBD的健康结果产生积极影响，并为其他儿科人群的自我管理干预提供模式。

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.