Original article
The Association of Race, Cultural Factors, and Health-Related Quality of Life in Persons With Spinal Cord Injury

https://doi.org/10.1016/j.apmr.2010.10.007Get rights and content

Abstract

Myaskovsky L, Burkitt KH, Lichy AM, Ljungberg IH, Fyffe DC, Ozawa H, Switzer GE, Fine MJ, Boninger ML. The association of race, cultural factors, and health-related quality of life in persons with spinal cord injury.

Objective

To examine the association of race and cultural factors with quality-of-life factors (participation, life satisfaction, perceived health status) in people with spinal cord injury (SCI).

Design

Cross-sectional multisite study using structured questionnaires.

Setting

Six National SCI Model Systems centers.

Participants

People with SCI (N=275; age ≥16y; SCI with discernable neurologic impairments; used power or manual wheelchair for >1y as primary means of mobility; nonambulatory except for exercise purposes).

Interventions

None.

Main Outcome Measures

Participation (Craig Handicap Assessment and Reporting Technique Short Form); satisfaction (Satisfaction With Life Scale); and perceived health status (2 items from 36-Item Short Form Health Survey).

Results

African American (n=96) with SCI reported more experiences of discrimination in health care, greater perceived racism, more health care system distrust, and lower health literacy than whites (n=156; P range, <.001–<.05). Participants who reported experiencing more discrimination in health care reported better occupational functioning (odds ratio [OR], 1.5; 95% confidence interval [CI], 1.07–2.09; P<.05). Those who perceived more racism in health care settings reported better occupational functioning (OR, 1.65; 95% CI, 1.12–2.43; P<.05) and greater perceived health (β=.36; 95% CI, .05–.68; P<.05). Those who reported more distrust in the health care system reported better current health compared with 1 year ago (β=.38; 95% CI, .06–.69; P<.05). Those who reported better communication with their health care provider reported higher levels of mobility (OR, 1.5; 95% CI, 1.05–2.13; P<.05) and better general health (β=.27; 95% CI, .01–.53; P<.05).

Conclusions

In this cross-sectional study of people with SCI, higher levels of perceived discrimination and racism and better communication with health care providers were associated with an increase in participation and functioning and improvements in perceptions of well-being. These associations are different from those reported in other study populations and warrant confirmation in future prospective studies.

Section snippets

Participants

Data were collected at 6 national SCIMS sites funded by the Department of Education National Institute on Disability and Rehabilitation Research. The SCIMS are specialized programs of care from across the nation that gather information and conduct research with the goal of improving long-term functional, vocational, cognitive, and QOL outcomes for people with SCI. SCIMS grantees contribute patient records to a national database maintained by a national statistical center that tracks the

Descriptive Data and Race Comparisons for Patient Characteristics and QOL Factors

Table 1 lists descriptive data for the study sample and racial comparisons for demographic, medical, cultural, psychosocial, and QOL factors. In our sample, African Americans had significantly less education, lower levels of employment, and lower total family income. African Americans also were less likely to be married and relied more on public insurance to cover the cost of their SCI care than whites. There were no group differences in numbers of comorbid conditions, years since injury, or

Discussion

The distribution of demographics and medical factors in our sample was similar to that of the SCI population in general.38 In addition, our results were consistent with other work examining race differences in basic demographic and socioeconomic factors, as well as studies examining race differences in perceived discrimination/racism and medical mistrust in health care.15, 16, 21, 27, 39, 40, 41, 42, 43

Our study contributes to this ongoing work by determining how cultural factors vary among

Conclusions

In summary, in our study examining race differences in culturally related characteristics in patients with SCI, we found significant differences between African Americans and whites for key demographic, cultural, and psychosocial factors. Confirming results found in other health care contexts, African Americans with SCI reported experiencing more discrimination and perceived greater racism in health care and had higher levels of health care system distrust and lower health literacy than whites

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      Finally, it is noteworthy that no cultural factors or psychosocial characteristics were associated with wheelchair quality for manual or power wheelchair users in our study. This finding was surprising in light of previous work finding positive associations of cultural and psychosocial factors with patient occupational functioning, mobility, and perceived health in nonveterans with SCI.43 The key difference between the current study and previous studies was that our outcome was wheelchair quality as opposed to quality of life.

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    Supported by the Department of Education, National Institute on Disability and Rehabilitation Research (grant nos. H133N060019, H113N060022, H133N060028) and the Veterans Administration (grant nos. B3142C, MRP04-409, HFP01-063, IIR06-220-3).

    No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.

    Reprints not available from the author.

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