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.
This proposed research is relevant to public health because the use of a clinically relevant measurement tool will promote the health of an underserved population of nearly six million women and girls with physical disabilities. Such tools are urgentl needed to help identify important gynecological and reproductive health issues and their effect on health-related quality of life. Thus, the proposed research is relevant to the part of NIH's mission that pertains to developing fundamental knowledge that will help to reduce the burdens of human disability.