A Self-Management Program for Improving the Well-Being of Veterans with AIS D Incomplete Spinal Cord Injury

背景和意义：脊髓损伤(SCI)是一种改变生活的事件，通常导致永久性的 瘫痪和感觉丧失，随后丧失身体功能和独立性，并有阴性的风险 心理社会后果。大约25%-51%的获得性脊髓损伤患者患有AISD脊髓损伤，并具有良好的 对于行走的预后，较不明显的残疾，通常具有较好的客观幸福感，例如 社区融合和移动性。然而，与直觉相反的是，患有AIS D SCI的退伍军人 主观幸福感(SWB)差的风险，包括更高的抑郁和自杀意念。几个 已经提出了可能解释幸福感差异的因素，包括不那么剧烈的康复 服务，工具性和社会支持网络的有限发展，更普遍的共病 健康问题，以及不发达的残疾身份。鉴于主观幸福感是生活质量的核心，它是必不可少的 了解和培养那些在SCI后最能支持SWB的技能、观点和资源。 具体目标：这项研究将开发第一个针对退伍军人福祉的干预措施 AIS D SCI通过使用自我管理的方法满足他们的特定需求。自我管理 (SM)计划通过培养参与度、知识和权威来指导对 有耐心的。针对患有AIS的退伍军人的需求和治疗偏好而量身定做的面向SM的计划 D SCI在改善福祉方面有很大的希望。因此，拟议的研究将发展脊髓损伤自评量表 AIS D(SCISM-D)计划的管理，这是一种单独管理的个性化支持和技能 通过退伍军人事务部的视频远程保健到家技术进行培训干预，以改善退伍军人的福祉 使用AIS D SCI。这项研究对退伍军人保健具有非常重要的意义，因为建议的 SCISM-D计划有望填补关键的医疗保健缺口并改善终生心理社会 为患有AIS D SCI的退伍军人服务。本研究有三个目的：(1)编制SCISM-D以增强 AIS D SCI退伍军人主观幸福感初步研究和焦点小组研究(目标2)开展 改进SCISM-D并检验SCISM-D的可行性和可接受性为未来做准备的初步研究 随机对照试验。(目标3)最后确定SCISM-D方案手册和消费者手册。 研究计划：对于目标1，两个4-6名患有AIS D脊髓损伤的退伍军人和两个4-6名脊髓损伤的焦点组 将招募提供者在两次会议期间对SCISM-D的建议组件进行审查、评级和讨论 每个人。根据焦点小组的评级和反馈，Scism-D节目手册和消费者 将编写手册。个别程序组件将改编自现有的SM手册，其中包括 其他是由调查人员开发的。完成后的计划手册和消费者手册将在 提交给重点小组和专家小组，征求反馈意见，然后进行最后一轮修订。标准 成功包括根据研究时间表完成焦点小组和材料。 接下来，将进行一项初步研究，以检验SCISM-D的可行性和随后的随机化 对照试验(目标2)。20名患有AIS D SCI的退伍军人将完成这项研究。预计将使用SCISM-D 通过退伍军人管理局的远程医疗系统进行5-7，45-60分钟的治疗。几项措施和 访谈将在计划期间进行，以评估治疗成果和调解人。标准 成功包括每月至少招募2名参与者的能力，至少75%的留存率，至少75%的保留率 患者满意度，以及信心和生活满意度的平均变化。 其他。在试点研究之后，焦点小组成员将被要求审查SCISM-D计划草案 手册和消费者手册，告知调查团队对内容和布局的最终修订 专业设计师(目标3)。

Background and Significance: Spinal cord injury (SCI) is a life-altering event that often results in permanent paralysis and sensory loss, with subsequent loss of physical function and independence and risk for negative psychosocial outcomes. About 25-51% of adults with acquired SCI have AIS D SCI and have an excellent prognosis for ambulation, are less visibly disabled, and generally have better objective well-being, such as community integration and mobility. However, counterintuitively, military Veterans with AIS D SCI are at higher risk of poor subjective well-being (SWB) including higher rates of depression and suicidal ideation. Several factors that may explain the disparity in well-being have been proposed, including less acute rehabilitation services, limited development of instrumental and social support networks, greater prevalence of comorbid health issues, and underdeveloped disability identity. Given that SWB is central to quality of life, it is essential to understand and foster those skills, perspectives, and resources that best support SWB after SCI. Specific Aims: This study will develop the first intervention targeting the well-being of Veterans with AIS D SCI by attending to their specific needs using a self-management approach. Self-management (SM) programs are differentiated by fostering engagement, knowledge, and authority to direct care to the patient. An SM-oriented program that is tailored to the needs and treatment preferences of Veterans with AIS D SCI has great promise to improve well-being. For this reason, the proposed study will develop the SCI Self- Management for AIS D (SCISM-D) Program, an individually administered, personalized support and skills training intervention via the VA’s video telehealth-to-home technology, to improve well-being among Veterans with AIS D SCI. This study is highly significant for Veteran health care, as creation of the proposed SCISM-D program is expected to fill a critical health care gap and improve lifetime psychosocial functioning for Veterans with AIS D SCI. This study has three aims: (Aim 1) Develop SCISM-D to enhance the SWB of military Veterans with AIS D SCI using preliminary research and focus groups. (Aim 2) Conduct a pilot study to improve SCISM-D and test the feasibility and acceptability of SCISM-D to prepare for a future randomized controlled trial. (Aim 3) Finalize the SCISM-D program manual and consumer handbook. Research Plan: For Aim 1, two focus groups of 4-6 Veterans with AIS D SCI and two focus groups of 4-6 SCI providers will be recruited to review, rate, and discuss proposed components of SCISM-D during two meetings each. Informed by the focus group ratings and feedback, the SCISM-D program manual and consumer handbook will be developed. Individual program components will be adapted from extant SM manuals with others developed by the investigators. The completed program manual and consumer handbook will then be presented to the focus groups and expert panel for feedback, followed by a final round of revisions. Criteria for success include completion of the focus groups and materials according to the study timeline. Next, a pilot study will be conducted to examine the feasibility of SCISM-D and a subsequent randomized controlled trial (Aim 2). A target of 20 Veterans with AIS D SCI will complete the study. SCISM-D is anticipated to involve 5-7, 45-60-minute sessions conducted via the VA’s telehealth system. Several measures and interviews will be administered during the program to assess treatment gains and mediators. Criteria for success include the ability to recruit at least 2 participants per month, at least 75% retention, at least 75% patient satisfaction, and an average change of “minimally improved” in confidence and life satisfaction, among others. After the pilot study, the focus group members will be asked to review the draft SCISM-D program manual and consumer handbook to inform final revisions to content by the team of investigators and layout by professional designers (Aim 3).