Assessing Health-Related Quality of Life and Subjective Well-Being in Adults with Spinal Cord Injury

This dissertation contributes to the scholarship on health outcomes among individuals with spinal cord injury (SCI). SCI is a dramatic, life-changing trauma that requires long-term and evolving care. Life with SCI entails learning to self-care, acquiring the right wheelchair, home adaptations, and learning to move inside and outside the home. Improving health outcomes measurement of this subgroup may benefit them by making SCI care more patient-centered, i.e. reflective of patients’ preferences and values. Three studies were conducted: (1) an assessment of associations between health-related quality of life (HRQOL) and evaluative well-being (EWB) measures collected in the United States (U.S.) Patient Reported Outcomes Measurement Information System (PROMIS�) project (Chapter 2); (2) a comparison of perceptions of quality of life (QOL) among adults with SCI in the U.S. versus the United Kingdom (UK) (Chapters 3 and 4); and (3) development and psychometric evaluation of a Fatigability Index for full-time wheelchair users with SCI (Chapter 5). The first study provides further evidence that there is an empirical overlap between HRQOL and EWB. The second study found that for adults living with SCI, good QOL is essential for successful rehabilitation. Differences between interviewees from the US and the UK in perceived medical care and functional adjustment suggest that factors affecting QOL may relate to broader health system characteristics. Also, understanding what HRQOL and subjective well-being (SWB) measures are valued by adults living with SCI can lead to selection of informative instruments, which could help clinicians to complement and tailor established care and rehabilitation protocols for individual needs. Specifically, measuring and managing fatigue in the context of SCI is important. The third study developed an instrument assessing physical and mental fatigability in adults with SCI. The instrument covers a comprehensive list of health problems and activities associated with fatigue. The psychometric evaluation shows high measurement precision in discriminating among individuals with a relatively wide range of fatigability. The resulting patient chart, the Fatigability Vector, highlights causes of fatigue and areas requiring immediate intervention