Women's Health & Disability: Building a Clinically Relevant Outcome Measure

女性健康

• 批准号: 9281040
• 负责人: CLAIRE Zabelle KALPAKJIAN
• 金额: $ 54.69万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-16 至 2020-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9281040
• 关键词: Address; Age; American; Caring; Chronic Disease; Clinical; Clinical Research; Clinical Trials; Computers; Critical Care; Data; Development; Disease; Emotional; Focus Groups; Generic Drugs; Goals; Gynecology; Health; Healthcare; Hemorrhage; Human; Impairment; Infertility; Information Systems; Knowledge; Lead; Measurement; Measures; Medical; Mental Health; Mission; Monitor; Outcome; Outcome Measure; Patient Outcomes Assessments; Patients; Physical Medicine; Physically Handicapped; Policies; Population Heterogeneity; Psychometrics; Public Health; Quality of life; Reproductive Health; Research; Research Personnel; Review Literature; Sampling; Specificity; Spinal cord injury; System; Testing; Underserved Population; United States National Institutes of Health; Validity and Reliability; Vulnerable Populations; Woman; Women' s Health; Work; care systems; clinical care; clinical practice; clinically relevant; cognitive testing; disability; evidence base; field study; girls; health related quality of life; improved; innovation; knowledge base; nervous system disorder; patient oriented; public health relevance; reproductive; research in practice; response; social; social exclusion; success; theories; tool; user-friendly; women with disabilities

DESCRIPTION (provided by applicant): Nearly 6 million American women and girls have physical disabilities. Characterized by impaired mobility, physical disability creates many social, psychological and health challenges. Gynecological and reproductive (G-R) health is essential to the overall health of all women. Nevertheless, many women with physical disabilities must endure environmental barriers and ill-informed systems of care to receive the G-R health care they need. Unfortunately, many must also endure significant marginalization when seeking and receiving care; as a result, some choose to forgo G-R care altogether. Despite the potentially dire consequences of poorly managed G-R health in this vulnerable and underserved population, very little is known about its impact on health-related quality of life. This paucity o information is due, in part, to the lack of relevant, sensitive, and specific measurement tools. Thus there is a critical need to create measurement tools that are relevant and important to women with physical disabilities. The proposed work will advance the field by addressing the gynecological and reproductive health of women with physical disabilities in the pursuit of three specific aims: 1) build clinically relevant item pools of health-related quality of life items in gynecological and reproductive health to enhance clinical care and research practice in an underserved population of women; 2) calibrate new item pools and create computer adaptive tests and short forms; and 3) psychometrically validate and demonstrate feasibility of the new measure in clinical settings. Meaningful and clinically relevant items will be generated through focus groups with women with physical disabilities and clinicians, literature review, expert review and cognitive testing. New items will be field tested in a large, diverse sample of women with physical disabilities and calibrated using Item Response Theory to develop computer adapted tests and short forms. Psychometric validity and reliability will be evaluated. Feasibility and clinical utility will be assessed by women with physical disabilities and their clinicians. The contribution of this project to the field is to develop a clinically relevant tool that will allow clinicians and researchers to validly and reliably measure gynecological and reproductive health related quality of life in women with physical disabilities. This contribution is significant becaue it is the first step in a continuum of research that is expected to lead to the development of evidence- based knowledge to guide clinical practice and improve the health and well-being of this vulnerable population. The research proposed in this application is innovative because it represents a new and substantive departure from the status quo by utilizing computer adaptive testing for efficiency and by providing clinicians with immediately identified problems and actionable solutions. Ultimately, this new measure can change clinical practice, inform policy, and significantly improve the health and lives of women with physical disabilities.

描述（由申请人提供）：近600万美国妇女和女孩有身体残疾。身体残疾的特征是流动性受损，创造了许多社会， 心理和健康挑战。妇科和生殖（G-R）健康对所有妇女的整体健康至关重要。然而，许多身体残疾的妇女必须忍受环境障碍和不明智的护理系统，以获得所需的G-R医疗保健。不幸的是，在寻求和接受护理时，许多人还必须忍受重大边缘化。结果，有些人选择完全放弃G-R护理。尽管在这个脆弱和服务不足的人群中管理不良的G-R健康造成了可怕的后果，但对其对与健康相关的生活质量的影响知之甚少。这种贫困的信息部分是由于缺乏相关，敏感和特定的测量工具所致。因此，迫切需要创建对身体残疾妇女相关且重要的测量工具。拟议的工作将通过解决身体残疾妇女的妇科和生殖健康，以追求三个具体目标：1）建立与临床相关的临床相关项目库中的妇科和生殖健康中的临床相关项目库，以增强妇女不受欢迎的妇女人群的临床护理和研究实践； 2）校准新项目池并创建计算机自适应测试和简短表格； 3）在临床环境中，心理验证并证明了新措施的可行性。有意义且与临床相关的物品将通过与身体残疾和临床医生的妇女的焦点小组生成 和认知测试。新项目将在大量的，多样化的身体残疾妇女样本中进行现场测试，并使用项目响应理论进行校准，以开发计算机调整的测试和简短形式。心理测量有效性和可靠性将被评估。可行性和临床公用事业将由身体残障及其临床医生评估。该项目对该领域的贡献是开发一种与临床相关的工具，该工具将使临床医生和研究人员有效，可靠地衡量身体残疾女性的妇科和生殖健康相关的生活质量。这项贡献是重要的，因为这是一项连续研究的第一步，预计将导致基于证据的知识来指导临床实践并改善这种脆弱人群的健康和福祉。本应用程序中提出的研究具有创新性，因为它通过利用计算机自适应测试来提高效率，并通过为临床医生提供立即确定的问题和可行的解决方案，这代表了与现状的新事物。最终，这项新措施可以改变临床实践，为政策提供信息，并显着改善身体残疾妇女的健康和生活。