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: 8551706
• 负责人: Noelle E. Carlozzi
• 金额: $ 54.76万
• 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 2017-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8551706
• 关键词: Address; Alcohol consumption; Anxiety; Attention; Biological Models; Caregiver Burden; Caregivers; Caring; Chronic Disease; Clinical; Clinical Research; Common Data Element; Computers; Development; Disease; Distress; Effectiveness; Face; Family; Family member; Focus Groups; Freedom; General Population; Generic Drugs; Goals; Heart; Impairment; Individual; Information Systems; Intervention; Investments; Longevity; Longitudinal Studies; Measurement; Measures; Mental Depression; Mental Health Services; Methods; Military Personnel; Outcome; Outcome Measure; Participant; Patient Care; Patient Outcomes Assessments; Patients; Persons; Physical Function; Population; Provider; Psyche structure; Quality of life; Recovery; Rehabilitation Research; Rehabilitation therapy; 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; base; clinical care; clinically relevant; computerized; design; disability; experience; health related quality of life; improved; innovation; meetings; operation; programs; response; satisfaction; social; 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）：尽管正在努力优先考虑对军事和民事相关 TBI 的护理人员进行研究和干预，但目前还没有采取任何措施 这些护理人员特有的健康相关生活质量 (HRQOL)。相反，HRQOL 的患者报告结果 (PRO) 指标已在其他人群中开发出来。例如，美国国立卫生研究院 (NIH) 投入了大量资金，通过 PROMIS（为慢性病开发）和补充举措来改善 PRO。 PROMIS 和这些补充举措旨在通过包含两项衡量指标的共同项目来评估另一衡量指标的分数；这些“通用数据元素”在当前的临床和研究实践中正在产生影响。这些举措涉及针对普通人群和多个临床人群制定措施。尽管这项创新工作的范围很大，但这些举措都没有检查护理人员的 HRQOL。鉴于需要针对护理人员进行有效的 HRQOL 测量，以准确评估临床和研究结果，这一点令人担忧。本研究将通过在大量 TBI 护理人员样本中测试 PROMIS 项目库来解决这一遗漏。这项研究还将开发新的护理人员特定项目库 (TBI-CareQOL)，该项目库将通过assessmentcenter.net 与 PROMIS 集成。具体来说，将通过对军人或平民 TBI 个人（n = 12 组）的护理人员的焦点小组进行定性分析来制定项目。然后，这些新开发的产品将在军人和平民 TBI 患者（n = 600）的护理人员的大量、多样化样本中进行测试。测试结束后，将采用最先进的方法，采用经典和现代的测试构建和验证方法（包括项目响应理论和计算机化自适应测试技术）来开发计算机化自适应测试，该测试可以进行简短而精确的测量临床相关症状和功能限制。然后，该拟议项目将在军事和民用 TBI 患者 (n=200) 的护理人员中验证 TBI-CareQOL 和 PROMIS。此外，我们将研究这些措施随时间变化的敏感性和响应能力。由此产生的量表将适用于民事和军事 TBI 护理人员，将用作国会授权的军队护理人员 15 年纵向研究的主要评估措施，并将在年度 TBI 模型中引入系统会议作为纳入纵向研究的潜在措施。最终，这项研究的结果将为提供者提供临床相关信息，允许对干预相关的变化进行更敏感的评估，并最大限度地提高临床干预的效率。