Quality of Life in Caregivers of Traumatic Brain Injury: The TBI-CareQOL

创伤性脑损伤护理人员的生活质量：TBI-CareQOL

• 批准号: 9099554
• 负责人: Noelle E. Carlozzi
• 金额: $ 60.9万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-09-27 至 2018-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9099554
• 关键词: Address; Alcohol consumption; Anxiety; Attention; Biological Models; Caregiver Burden; Caregivers; Caring; Chronic Disease; Clinical; Clinical Research; Common Data Element; Computers; Development; Disabled Persons; Disease; Distress; Effectiveness; Facial Injuries; Family; Family member; Focus Groups; Freedom; General Population; Generic Drugs; Goals; Heart; Impairment; Individual; Information Systems; Intervention; Investments; Longevity; Longitudinal Studies; Measurement; Measures; Medical center; Mental Depression; Mental Health Services; Methods; Military Personnel; Outcome; Outcome Measure; Outcomes Research; Participant; Patient Care; Patient Outcomes Assessments; Patient-Focused Outcomes; Persons; Physical Function; Population; Provider; Psyche structure; Quality of life; Recovery; Rehabilitation Research; Research; Research Personnel; Research Priority; Resort; Sampling; Social isolation; Symptoms; System; Technology; Testing; Time; Traumatic Brain Injury; Underserved Population; United States National Institutes of Health; Validation; Work; alcohol and other drug; base; caregiver interventions; clinical care; clinically relevant; computerized; design; disability; experience; health related quality of life; improved; innovation; meetings; operation; programs; response; satisfaction; social; stressor; theories

DESCRIPTION (provided by applicant): Despite ongoing efforts to prioritize research and interventions for caregivers of military- and civilian-related TBI, there are currently no measures of health-related quality of life (HRQOL) that are specific to these caregivers. Conversely, patient reported outcomes (PROs) measures of HRQOL have been developed in other populations. For example, the National Institutes of Health (NIH) has made a significant investment to improve PROs through both PROMIS (developed for use in chronic disease) and complementary initiatives. PROMIS and these complementary initiatives are designed to allow scores on one measure to be estimated on the other by the inclusion of common items on both measures; these "common data elements" are gaining influence in current clinical and research practice. These initiatives have involved development of measures in both the general population and multiple clinical populations. Despite the scope of this innovative work, none of these initiatives has examined HRQOL in caregivers. This is concerning given that a valid caregiver-specific measure of HRQOL is necessary to accurately evaluate clinical and research outcomes. This study will address this omission by testing PROMIS item banks in a large sample of TBI caregivers. This study will also develop new caregiver-specific item banks (TBI-CareQOL) that will be integrated with PROMIS through assessmentcenter.net. Specifically, items will be developed through qualitative analysis from focus groups in caregivers of individuals with either military- or civilian-TBI (n=12 groups). These newly developed items will then be tested in a large, diverse sample of caregivers of individuals with military- and civilian-TBI (n=600). After this testing, a state-of-the-art approach employing both classical and contemporary methods of test construction and validation - including Item Response Theory and computerized adaptive testing technology - will be used to develop a computerized adaptive test that permits brief and precise measurement of clinically relevant symptoms and functional limitations. This proposed project will then validate the TBI-CareQOL and PROMIS in caregivers of individuals with military- and civilian-TBI (n=200). Further, we will examine these measures' sensitivity and responsiveness to change over time. The resulting scale will be appropriate for use with both civilian- and military-TBI caregivers, will be utilized as a primary assessment measure in the Congressionally mandated 15-year longitudinal study of caregivers in the military, and will be introduced at the annual TBI model system meetings as a potential measure for inclusion in their longitudinal study. Ultimately, the findings from this study will provide clinically relevant information to providers, allow for more sensitive assessment of intervention-related change, and maximize the efficiency of clinical interventions.

描述（由申请人提供）：尽管持续努力为与军事和平民相关的TBI的护理人员进行优先研究和干预措施，但目前尚无措施 与健康相关的生活质量（HRQOL）的特定于这些护理人员。相反，患者报告的HRQOL的结果（PRO）在其他人群中已经开发出来。例如，美国国立卫生研究院（NIH）通过Promis（用于用于慢性疾病）和补充计划的Promis（开发出来）进行了巨大的投资。 Promis和这些互补举措旨在通过在两种措施中包含共​​同项目来估算一项措施的分数；这些“常见数据元素”在当前的临床和研究实践中受到影响。这些举措涉及一般人群和多个临床人群的措施制定。尽管这项创新工作的范围范围范围，但这些举措都没有研究过护理人员的HRQOL。鉴于对HRQOL的有效护理人员的特定度量对于准确评估临床和研究结果是必要的，这是关于这是关于HRQOL的。这项研究将通过在大量TBI护理人员样本中测试Promis物品库来解决这一遗漏。这项研究还将开发新的护理人员特定的物品银行（TBI-Careqol），该商品将通过IssessmentCenter.net与Promis集成。具体而言，将通过焦点小组的定性分析来开发项目，这些人的护理人员是军事或平民-TBI的个人（n = 12组）。然后，这些新开发的项目将在有军事和平民TBI的个人的大量，多样化的看护人中进行测试（n = 600）。在此测试之后，将采用经典和当代测试结构和验证方法的最先进方法（包括项目响应理论和计算机化自适应测试技术）来开发计算机化的自适应测试，该测试允许对临床相关症状和功能限制进行简要和精确的测量。然后，这个拟议的项目将在军事和平民-TBI的个人的照顾者中验证TBI-Careqol和Promis（n = 200）。此外，我们将检查这些措施随着时间的变化的敏感性和响应能力。最终的量表将适用于平民和军事TBI护理人员，将在国会授权的15年军事护理人员的纵向研究中用作主要评估措施，并将在年度TBI模型系统会议上引入其纵向研究中的潜在措施。最终，这项研究的发现将向提供者提供临床相关的信息，从而对与干预相关的变化进行更敏感的评估，并最大程度地提高临床干预效率。