Pilot Study: Self Management Groups for Veterans with Dual Sensory Loss

描述(由申请人提供)： 项目摘要/摘要退伍军人同时出现视力和听力障碍的风险随着年龄的增长而增加。研究表明，多达20%的70岁以上的美国人现在经历了这种双重感觉丧失(DSL)，多达190万人。DSL给患有这种疾病的人带来了严重的问题。视障人士在与周围环境互动时会遇到困难，但通常会将听力作为一种补偿。听力受损的人会遇到沟通障碍，并经常使用他们的视力来克服这些障碍。因此，那些患有DSL的人在管理他们的环境和与他人沟通方面举步维艰，同时缺乏那些单一感觉障碍者可用的一些补偿选择。患有DSL的成年人经常报告沮丧、很少社交活动和抑郁也就不足为奇了。虽然验光师和听力专家等提供者可以提供许多有价值的服务，帮助恢复一些因感觉丧失而受到阻碍的能力，但研究表明，功能和心理社会困难往往挥之不去，特别是DSL对视觉和听力的综合影响。我们建议进行一项为期两年的试验研究，由俄勒冈州波特兰市的退伍军人退伍军人康复听力研究国家中心(NCRAR)进行，佐治亚州亚特兰大的退伍军人老年视力丧失卓越中心(CAVVL)和纽约的海伦凯勒国家失聪青少年和成人中心(HKNC)的专家咨询。这项试点研究的目的是设计和进行自我管理小组的初步评估，旨在为患有DSL的门诊退伍军人提供结构化的教育和相互分享的机会。我们将仔细研究我们的研究方法的可行性，如果成功，我们的方法将被用于全面的临床试验，以检验DSL自我管理小组作为增值服务的有效性，这比退伍军人DSL患者从退伍军人退伍军人从退伍军人退伍军人失明/低视力和听力服务提供的标准护理中获得的帮助更大。我们的国家研究小组将合作编写一份项目手册的工作草案，其中包含自我管理小组课程和关键后勤程序指南，以确保视力和听力受限的参与者的有效交通和通信。24名55岁以上患有DSL的退伍军人，不分性别和不同种族，将在俄勒冈州波特兰的研究网站登记。这些退伍军人将接受筛查，以确定自退伍军人管理局电子病历上一次录入以来，他们的视力、听力或适应技术是否恶化，如果有，当地退伍军人管理局诊所将提供最新的服务。当临床康复是最新的时候，退伍军人将被随机分配参加自我管理小组(DSL小组)，这些小组每周举行六次会议，持续两个小时，要么立即参加，要么在等待名单期间之后参加。所有退伍军人将在开始DSL小组参与之前进行基线问卷调查，以评估他们对DSL的功能和心理社会适应，并在DSL小组参与后进行测试。DSL小组将采用各种住宿方式，以确保所有退伍军人充分参与，课程基于当前的证据，即成功地利用自我管理小组为残疾成年人和其他慢性健康问题服务。研究小组将在整个项目的两年期间完善DSL小组课程和项目程序。如果我们的结果表明小组有希望，我们的方法是有效的，我们将有一份完整的课程和技术手册，以及进行严格的后续随机临床试验的既定结果衡量标准和程序，以确定这种方法是否对全国退伍军人管理局提供者有用，以帮助患有DSL的退伍军人提高他们的生活质量。 公共卫生相关性： 项目简介：数据显示，目前有多达35万退伍军人同时患有听力和视力丧失(双重感觉丧失，DSL)，人口趋势表明，到2030年，美国可能有350万至1400万人患有DSL。患有DSL的成年人报告说，他们抑郁，精神和社交健康状况不佳，很少参加社交活动。退伍军人管理局因此确定患有DSL的退伍军人是优先考虑的人群，需要进行研究以建立满足他们需求的最佳实践。这项初步研究借鉴了有关有效利用自我管理小组对有慢性健康问题(包括感觉丧失)的人的文献，这些小组利用结构化教育和与同龄人分享。这项试点研究将首次开发和实施一个针对患有DSL的门诊退伍军人的特定需求的自我管理小组，并检查适应这一具有挑战性的人群的研究方法的可行性。结果将指导进行后续随机临床试验，为退伍军人管理局提供证据基础和课程/技术手册，以改善对患有DSL的退伍军人的服务。

DESCRIPTION (provided by applicant): Project Summary/Abstract The risk that a Veteran will experience concurrent visual and hearing impairments increases with age. Research indicates that as many as 20% of Americans over the age of 70 now experience this dual sensory loss (DSL), up to about 1.9 million people. DSL poses serious problems for people with this diagnosis. Visually impaired people experience difficulties interacting with their environment, but often use their hearing as a way of compensating. Hearing impaired people experience barriers to communication and often use their vision to overcome these obstacles. Those with DSL, therefore, struggle with both managing their environment and communicating with others while lacking some of the compensatory options available to those with a single sensory disability. It is not surprising that adults with DSL often report frustration, few social activities and depression. While providers such as optometrists and audiologists can provide many valuable services to help restore some of the capabilities impeded by sensory loss, studies show functional and psychosocial difficulties often linger, especially with DSL's combined impacts on vision and hearing. We propose a two year pilot study, conducted by the VA National Center for Rehabilitative Auditory Research (NCRAR) in Portland, Oregon, with expert consultation from the VA Center of Excellence for Aging Veterans with Vision Loss (CAVVL) in Atlanta, Georgia and the Helen Keller National Center for Deaf-Blind Youth and Adults (HKNC) in New York. The purpose of this pilot study is to design and conduct a preliminary evaluation of self management groups intended to provide structured education and opportunities for mutual sharing by outpatient military Veterans with DSL. We will carefully investigate the feasibility of our research methodology, intending that, if successful, our methods be used for a full clinical trial to examine the efficacy of DSL self management groups as value added services, useful beyond what Veterans with DSL derive from standard care offered by VA blind/low vision and audiology services. Our national research team will collaborate to produce a working draft of the project manual, containing the self management group curriculum and guidelines for critical logistical procedures for ensuring effective transportation and communication for participants with vision and hearing limitations. Twenty four Veterans with DSL over age 55, of both genders and from varied ethnic origins will be enrolled at the research site in Portland, Oregon. These Veterans will be screened to establish whether their vision, hearing or adaptive technology have deteriorated since last entries in the VA electronic medical record, and if indicated, updated services will be provided by local VA clinics. When clinical rehabilitation is up to date Veterans will be randomly assigned to participate either immediately, or after a wait list period, in self management groups (DSL groups) that meet for six weekly sessions of two hours duration. All Veterans will take baseline questionnaires before beginning DSL group participation to assess their functional and psychosocial adaptation to DSL, and post- tests after DSL group participation. The DSL groups will employ a variety of accomodations to ensure that all Veterans participate fully, with curriculum drawn from the current evidence base on the successful use of self management groups for adults with disabilities and other chronic health issues. The research team will refine the DSL group curriculum and the project procedures throughout the two year period of the project. If our results show the groups have promise and our methodology is effective, we will have a completed Curriculum and Technical Manual and established outcome measures and procedures for conducting a rigorous follow up randomized clinical trial to establish whether this approach will be useful to VA providers nationwide for assisting Veterans with DSL in improving their quality of life. PUBLIC HEALTH RELEVANCE: Project Narrative: Data show up to 350,000 Veterans now have both hearing and vision loss (Dual Sensory Loss, DSL) and population trends suggest 3.5 to 14 million Americans could have DSL by 2030. Adults with DSL have reported depression, poor mental and social well-being and few social activities. VA thus determined Veterans with DSL are a priority population, with research needed to establish best practices for serving their needs. This pilot study draws from literature on the effective use of self management groups for people with chronic health issues, including sensory loss, which utilize structured education and sharing with peers. The pilot study will develop and implement a self management group tailored for the first time to the specific needs of outpatient Veterans with DSL, and examine the feasibility of research methods adapted to this challenging population. Results will guide the conduct of a followup randomized clinical trial that could provide VA with an evidence base and curriculum/technical manual for improving services to Veterans with DSL.