Racial differences in data quality and completeness: Spinal cord injury model systems' experiences

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Study examined the role of race/ethnicity on data quality and response completeness among individuals enrolled in a longitudinal spinal cord injury (SCI) database. This study included 7,507 adults (5,483 non-Hispanic whites, 1,414 non-Hispanic blacks, and 610 Hispanics) from 19 SCI Model Systems centers, who returned for follow-up between 2001 and 2006. The missing data rate was calculated for each outcome variable at each post-injury year, stratified by race/ethnicity. Missing data were defined as any missing, unknown, or refusal response to interview items. The overall missing rate was 29.7, 9.5, 9.7, 10.7, 12.0, and 9.8 percent for the Craig Handicap Assessment and Reporting Technique-Short Form (CHART) economic self-sufficiency subscale, CAGE questionnaire, drug use, Diener’s Satisfaction with Life Scale, Patient Health Questionnaire, and pain severity, respectively. The missing rate for the CHART measure was significantly higher among non-Hispanic blacks and Hispanics than among non-Hispanic whites, after controlling for demographics, injury factors, mode of data collection, and study sites. The missing data in the other outcome measures examined were also significantly higher among non-Hispanic blacks than among non-Hispanic whites, but were not significantly different between Hispanics and non-Hispanic whites. The results highlight the importance of research methodology designed to improve non-response or response incompleteness, particularly in non-Hispanic blacks, as we move to reduce racial/ethnic disparities and strive to explain how and why disparities occur in the SCI population.

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