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

ABSTRACT: OBJECTIVE:To 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. DESIGN:We conducted 20 in-depth interviews. SETTING:Participants were interviewed in their homes, some in person and some via Skype. PARTICIPANTS:A convenience sample of 20 adults with SCI (10 in the US and 10 in the UK) were recruited via print and on-line advertisements. INTERVENTIONS:Not applicable. MAIN OUTCOME MEASURES:Interviewees 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. RESULTS:Participants 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." CONCLUSIONS:Understanding 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.

SUBMITTER: Palimaru AI

PROVIDER: S-EPMC6522975 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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

Palimaru Alina Ionela AI Cunningham William E WE Dillistone Marcus M Vargas-Bustamante Arturo A Liu Honghu H Hays Ron D RD

The journal of spinal cord medicine 20180523 3

<h4>Objective</h4>To 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.<h4>Design</h4>We conducted 20 in-depth interviews.<h4>Setting</h4>Participants were interviewed in their homes, some in person and some via Skype.<h4>Participants</h4>A convenience sample of 20 adults with SCI (10 in the US ...[more]

PMID: 29791302

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Project description:Background: Subjective well-being refers to the extent to which a person believes or feels that her life is going well. It is considered as one of the best available proxies for a broader, more canonical form of well-being. For over 30 years, one important distinction in the conceptualization of subjective well-being is the contrast between more affective evaluations of biological emotional reactions and more cognitive evaluations of one's life in relation to a psychologically self-imposed ideal. More recently, researchers have suggested the addition of harmony in life, comprising behavioral evaluations of how one is doing in a social context. Since measures used to assess subjective well-being are self-reports, often validated only using Classical Test Theory, our aim was to focus on the psychometric properties of the measures using Item Response Theory. Method: A total of 1000 participants responded to the Positive Affect Negative Affect Schedule. At random, half of the participants answered to the Satisfaction with Life Scale or to the Harmony in life Scale. First, we evaluate and provide enough evidence of unidimensionality for each scale. Next, we conducted graded response models to validate the psychometric properties of the subjective well-being scales. Results: All scales showed varied frequency item distribution, high discrimination values (Alphas), and had different difficulty parameters (Beta) on each response options. For example, we identified items that respondents found difficult to endorse at the highest/lowest point of the scales (e.g., "Proud" for positive affect; item 5, "If I could live my life over, I would change almost nothing," for life satisfaction; and item 3, "I am in harmony," for harmony in life). In addition, all scales could cover a good portion of the range of subjective well-being (Theta): -2.50 to 2.30 for positive affect, -1.00 to 3.50 for negative affect, -2.40 to 2.50 for life satisfaction, and -2.40 to 2.50 for harmony in life. Importantly, for all scales, there were weak reliability for respondents with extreme latent scores of subjective well-being. Conclusion: The affective component, especially low levels of negative affect, were less accurately measured, while both the cognitive and social component were covered to an equal degree. There was less reliability for respondents with extreme latent scores of subjective well-being. Thus, to improve reliability at the level of the scale, at the item level and at the level of the response scale for each item, we point out specific items that need to be modified or added. Moreover, the data presented here can be used as normative data for each of the subjective well-being constructs.

Dataset Information

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

Publications

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

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