A web-based program to improve chronic illness self-management by engaging patients and informal caregivers

背景：对于80%的美国老年人谁至少有一个慢性疾病，分享自我- 管理责任与照顾者（亲戚或朋友）预测长寿，更好的健康，更好的 生活质量和住院率更低。护理人员经常支持患者的自我管理努力。 这可以使患者和护理人员更接近，但也可以产生压力，这可能会干扰自我， 管理然而，自我管理计划很少支持病人照顾者的应对需求。 重要性：有500多万退伍军人的照顾者; 75%的老年退伍军人得到一些 照顾者的支持。照顾者即使提供无偿照顾，也要承担个人的经济和情感成本。 拥有一个有效的自我管理战略，解决双方的需要，可以改善成果， 数百万患有慢性疾病的退伍军人及其照顾者的生活质量。这个项目 处理“长期护理和照料”、“虚拟护理/远程保健”和“获得护理”等优先事项， 这与《使命法案》的立法目标是一致的。 创新和影响：这一高度创新的提案采用了新颖的概念， 退伍军人和照顾者之间的人际关系可以改善慢性病的自我管理， 条件它挑战了目前的临床范式，解决集体压力应对需要的二分体。 它在方法上是创新的，因为与许多行为干预试验不同，它评估了障碍， 促进者为今后的执行工作制定计划。我们对技术支持工具的关注是及时的， COVID 19已经改变了医疗服务。该项目利用VA的独特能力 卫生系统探索问题，包括强大的照顾者支持和虚拟护理程序。 具体目标：在VA HSR&D的投资下，我们开发并成功地进行了新的试点测试。 理论上衍生的技术称为基于网络的自我护理使用协作应对增强， 疾病（网络成功）。我们建议进行一项随机临床试验，比较web-SUCCEED和 增强型常规护理（EUC）控制。我们将在综合评估的指导下进行形成性评估， 实施研究框架（CFIR），以加快未来的实施。 1.评估与EUC相比，web-SUCCEED是否改善了退伍军人自我管理的结果，4 随机分组后6周和6个月。 2a.评估web-SUCCEED是否改善了患者的压力和生活质量。 2b.评估web-SUCCEED是否改善了护理人员的压力、生活质量和护理人员的负担。 2c.检查沟通，二元应对，相互性和关系质量作为主要和 次要结局（目标1、2a、2b）。 3.在CFIR的指导下，进行形成性评估，包括与关键利益相关者进行访谈，以了解障碍 和促进今后执行的机构。 方法：我们将从VA帕洛阿尔托医疗保健系统招募280名认知完整的退伍军人，他们是 管理至少一种常见的慢性病，以及他们的照顾者。退伍军人和护理人员的二人组合将是 以1：1的比例随机分配至web-SUCCEED或EUC。退伍军人和护理人员评估将在基线时进行， 然后在4周和6个月时再进行一次。形成性评价将以CFIR为指导， 在第4年与临床工作人员，供应商和设施负责人进行结构化访谈。 下一步：我们的形成性评估将为我们的实施研究做好准备， 更广泛的临床设置和设施。现有的业务伙伴关系将促进更广泛的临床 将研究成果转化为实践。我们的创新项目，强大的调查团队和 业务伙伴关系将确保研究取得成功，有可能改变临床模式。

Background: For the 80% of older Americans who have at least one chronic condition, sharing self- management responsibilities with caregivers (relatives or friends) predicts longevity, better health, better quality of life, and fewer hospitalizations. Caregivers often support patients in their self-management efforts. This can bring patients and caregivers closer but can also generate stress for both that can interfere with self- management. Yet, self-management programs rarely support the coping needs of patient-caregiver dyads. Significance: There are more than 5 million caregivers of Veterans; 75% of older Veterans receive some caregiver support. Caregivers incur individual financial and emotional costs even as they provide unpaid care. Having an effective self-management strategy that addresses the needs of both can improve outcomes and quality of life for millions of Veterans who suffer from chronic illnesses and their caregivers. This project addresses the priorities “Long-term care and Caregiving,” “Virtual Care/Telehealth,” and “Access to Care” and is consistent with the legislative goals of the MISSION Act. Innovation and Impact: This highly innovative proposal uses the novel concept that strengthening the interpersonal relationships between Veterans and caregivers can improve the self-management of chronic conditions. It challenges current clinical paradigms by addressing the collective stress coping needs of dyads. It is methodologically innovative because unlike many behavioral intervention trials, it assesses barriers and facilitators to plan for future implementation. Our focus on technology-enabled tools is timely given how COVID19 has transformed care delivery. This project takes advantage of the unique capabilities of the VA health system to explore questions including robust caregiver support and virtual care programs. Specific Aims: With investments from VA HSR&D, we have developed and successfully pilot tested a new theoretically-derived technology called Web-based Self-care Using Collaborative Coping EnhancEment in Diseases (web-SUCCEED). We propose to conduct a randomized clinical trial comparing web-SUCCEED to an enhanced usual care (EUC) control. We will conduct a formative evaluation guided by the Consolidated Framework of Implementation Research (CFIR) to accelerate future implementation. 1. Assess whether web-SUCCEED improves Veteran outcomes of self-management compared to EUC, 4 weeks and 6 months following randomization. 2a. Assess whether web-SUCCEED improves patient stress and quality of life. 2b. Assess whether web-SUCCEED improves caregiver stress, quality of life and caregiver burden. 2c. Examine communication, dyadic coping, mutuality, and relationship quality as mediators of primary and secondary outcomes (Aims 1, 2a, 2b). 3. Guided by CFIR, conduct a formative evaluation involving key stakeholder interviews to understand barriers and facilitators of future implementation. Methodology: We will recruit 280 cognitively intact Veterans from VA Palo Alto Health Care System who are managing at least one common chronic condition, and their caregivers. Veteran-caregiver dyads will be randomized 1:1 to web-SUCCEED or EUC. Veteran and caregiver assessments will take place at baseline, then again at 4 weeks and 6 months. The formative evaluation will be guided by CFIR and involve semi- structured interviews with clinical staff, providers, and facility leaders in Year 4. Next Steps: Our formative evaluation will set us up for implementation studies to evaluate web-SUCCEED in a wider array of clinical settings and facilities. Existing operational partnerships will facilitate wider clinical implementation and moving research into practice. Our innovative project, strong investigative team and operational partnerships will ensure a successful study that has the potential to shift clinical paradigms.