The association of race, cultural factors, and health-related quality of life in persons with spinal cord injury.

ABSTRACT

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 (ß=.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 (ß=.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 (ß=.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.