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

Preferences of adults with spinal cord injury for widely used health-related quality of life and subjective well-being measures.

ObjectiveTo describe preferences for survey instruments on health-related quality of life (HRQOL) and subjective well-being (SWB) among adults with spinal cord injury (SCI), and compare perspectives on the instruments between the United States and the United Kingdom.DesignWe conducted 20 in-depth interviews.SettingParticipants were interviewed in their homes, some in person and some via Skype.ParticipantsA convenience sample of 20 adults with SCI (10 in the US and 10 in the UK) were recruited via print and on-line advertisements.InterventionsNot applicable.Main outcome measuresInterviewees reviewed six instruments and rated how important it was for their medical providers to know answers to each survey. Two coders analyzed verbatim transcriptions independently using an inductive approach. Keyword-in-context (KWIC) analysis identified the most frequently used words by interviewees to discuss the merits of each instrument.ResultsParticipants in both samples identified the Fatigue Severity Scale (FSS) as "vital" that their medical providers know about it. This was followed by the Spinal Cord Injury Independence Measure III, and a stand-alone Eudaimonic Well-Being question. The KWIC analysis showed that the most distinctive words used to discuss FSS were "fatigue" and "pain."ConclusionsUnderstanding what HRQOL and 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. Participants identified fatigue as a significant issue, and the FSS as a vitally important instrument to share with medical providers

Preferences of adults with spinal cord injury for widely used health-related quality of life and subjective well-being measures

ObjectiveTo describe preferences for survey instruments on health-related quality of life (HRQOL) and subjective well-being (SWB) among adults with spinal cord injury (SCI), and compare perspectives on the instruments between the United States and the United Kingdom.DesignWe conducted 20 in-depth interviews.SettingParticipants were interviewed in their homes, some in person and some via Skype.ParticipantsA convenience sample of 20 adults with SCI (10 in the US and 10 in the UK) were recruited via print and on-line advertisements.InterventionsNot applicable.Main outcome measuresInterviewees reviewed six instruments and rated how important it was for their medical providers to know answers to each survey. Two coders analyzed verbatim transcriptions independently using an inductive approach. Keyword-in-context (KWIC) analysis identified the most frequently used words by interviewees to discuss the merits of each instrument.ResultsParticipants in both samples identified the Fatigue Severity Scale (FSS) as "vital" that their medical providers know about it. This was followed by the Spinal Cord Injury Independence Measure III, and a stand-alone Eudaimonic Well-Being question. The KWIC analysis showed that the most distinctive words used to discuss FSS were "fatigue" and "pain."ConclusionsUnderstanding what HRQOL and 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. Participants identified fatigue as a significant issue, and the FSS as a vitally important instrument to share with medical providers

Development and Psychometric Evaluation of a Fatigability Index for Full-Time Wheelchair Users With Spinal Cord Injury.

OBJECTIVE:To develop and evaluate psychometrically a self-reported instrument assessing physical fatigability (PF) and mental fatigability (MF) in adults with spinal cord injury (SCI). DESIGN:Cross-sectional. SETTING:Peer-support groups at rehabilitation centers, online support groups. PARTICIPANTS:Adults with SCI (N=464) in the United States. INTERVENTIONS:Not applicable. MAIN OUTCOME MEASURES:The dimensional structure was assessed by confirmatory factor analysis. The relationship between item responses and fatigability was measured with item response theory (graded response model). Reliability was measured with test information functions. Differential item functioning was evaluated with Wald chi-square tests and the weighted area between the curves. Construct validity was assessed using the known groups method. RESULTS:An 82-item pool was developed from prior qualitative research and consultations with rehabilitation experts. A non-probability sample (N=464) was used to evaluate the psychometric properties of the PF and MF scales. The item pool was reduced to 75 based on factor loadings and R2. Both scales are primarily unidimensional, despite moderate multidimensionality. There is good discrimination overall: 18 PF items and 26 MF items have high or very high discrimination power (slopes > 1.35). The measurement precision in the theta range -2.0 to 2.5 is the equivalent of 0.94 reliability for PF and 0.91 for MF. For both measures, F statistics P values were significant at P<.01, and means were higher for those with paraplegia vs quadriplegia, and for those with incomplete paraplegia. CONCLUSIONS:The Fatigability Index is the first instrument designed to assess physical and mental fatigability in adults with SCI. The index highlights causes of fatigue and areas requiring immediate intervention. Development of short-forms and further research on representative samples are necessary