Peer Mentoring to Improve Self-Management in Youth with IBD

项目摘要/摘要 对慢性病的最佳自我管理有助于将其对生活的负面影响降至最低。因此，它包括 管理其对生活的影响以及医疗自我管理。然而，自我管理干预通常 只专注于医疗管理。这是一个问题，因为1)高达35%的患有IBD的年轻人有过这种经历 在自我管理的其他领域，特别是在社会和总体管理方面，临床上存在重大困难 疾病对生活的影响(例如，生活质量)，即使在疾病不活跃的情况下；和2)这些问题是 预测成年后的职业、社会和情感问题。在IBD，每年损失55亿美元 仅限员工不参与。这表明患有IBD的年轻人持续面临自我能力不足的风险。 管理IBD对他们成年后生活的影响。这项研究的目的是解决这些问题 即使在多方面的同伴指导计划缓解期间仍存在的损害领域。辅导 计划在普通人群中很常见，众所周知，它可以改善过多的结果， 包括社交、情感和学业成果，所有这些都是成功管理生活所必需的 患有IBD。与其他形式的干预相比，同伴指导计划尤其提供了创新的优势 对于患有IBD的年轻人：1)同伴导师是在某种程度上使疾病正常化和去污名化的榜样 专业人士不能，以及2)在同行导师的帮助下，自我管理活动在 社区，以传统干预措施所不具备的方式促进普遍性和独立性。尽管 儿科慢性病患者普遍热衷于同伴辅导，但此类项目收效甚微 经验主义的注意力。我们的指导计划是通过焦点小组开发的，这是一项由NIH资助的试点研究， 国家辅导资源，以及PI与老大哥大姐妹的10年经验。它由以下内容组成 为期一年的1：1导师关系，包括团体自我管理活动、私人在线社区、 和父支持组件。我们的试点研究证明了可行性、满意度和改进 生活质量(QOL)、典型生活活动的功能、IBD自我效能和缓解率。在 拟议的研究，200名青年和他们的父母，以及100名导师将被纳入这项随机的多地点研究 比较辅导计划和教育活动对照组的临床对照试验 在生活质量、典型生活活动中的功能和疾病结果(例如，生物标记物和 标准化指数)。有助于结果的机制，包括感觉到的耻辱、与疾病有关的 自我效能感、应对方式和疾病不确定性也将被检查。辅导计划是一种创新的 自我管理干预具有广泛的吸引力和对慢性病的适用性，可以帮助青年 管理即使在不活跃的疾病中也会持续存在的损害区域，并可能持续到成年。

PROJECT SUMMARY/ABSTRACT Optimal self-management of a chronic illness results in minimizing its negative impact on life. Thus, it includes managing its effects on life as well as medical self-management. Yet self-management interventions typically focus only on medical management. This is a problem because 1) up to 35% of youth with IBD experience clinically significant difficulty in other areas of self-management, particularly in managing the social and overall impact of the disease on life (e.g., quality of life), even when the disease is inactive; and 2) these problems are predictive of occupational, social and emotional problems in adulthood. In IBD, $5.5 billion is lost each year in workforce nonparticipation alone. This suggests youth with IBD are at continued risk for inadequate self- management of the effect of IBD on their lives as adults. The objective of this study is to address these areas of impairment that persist even during remission with a multifaceted peer mentoring program. Mentoring programs are common in the general population and are well-known to improve a plethora of outcomes, including social, emotional and academic outcomes, all of which are necessary for successfully managing life with IBD. Peer mentoring programs in particular offer innovative advantages over other forms of intervention for youth with IBD: 1) A peer mentor is a role model who normalizes and de-stigmatizes the disease in a way that a professional cannot, and 2) With a peer mentor, self-management activities take place within the community, promoting generalization and independence in ways that traditional interventions do not. Despite widespread enthusiasm for peer mentoring in pediatric chronic illness, such programs have received little empirical attention. Our mentoring program was developed via focus groups, an NIH-funded pilot study, national mentoring resources, and the PI's 10 years of experience with Big Brothers Big Sisters. It consists of year-long, 1:1 mentee-mentor relationships with group self-management activities, a private online community, and a parent support component. Our pilot study demonstrates feasibility, satisfaction, and improvement in the areas of quality of life (QOL), functioning in typical life activities, IBD self-efficacy, and rates of remission. In the proposed study, 200 youth and their parents, and 100 mentors will be enrolled in this multisite, randomized controlled clinical trial comparing those in the Mentoring Program to an Educational Activity comparison group in the areas of QOL, functioning in typical life activities, and disease outcomes (e.g., biomarker and standardized indices). Mechanisms that contribute to outcomes, including perceived stigma, disease-related self-efficacy, coping and disease uncertainty will be examined as well. A mentoring program is an innovative self-management intervention with broad appeal and applicability across chronic illnesses that can help youth manage areas of impairment that persist even with inactive disease, and potentially into adulthood.