Racial differences in data quality and completeness: spinal cord injury model systems’ experiences
Open accessAbstract
Background: Among people with spinal cord injury (SCI), minorities experience a disproportionately higher burden of diseases. Knowledge of data quality by race/ethnicity will help better design racial health disparity research and understand potential errors/biases. Objective: To investigate racial/ethnic differences in response completeness in a longitudinal SCI database. Methods: This study included 7,507 participants (5,483 non-Hispanic whites, 1,414 non-Hispanic blacks, and 610 Hispanics) enrolled in the National SCI Database who returned for follow-up between 2001 and 2006 and were aged ≥18 years at follow-up. Missing data were defined as any missing, unknown, or refusal response to interview items. Results: The overall missing rate was 29.7%, 9.5%, 9.7%, 10.7%, 12.0%, and 9.8% 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. Conclusion: Our study highlights 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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Ten of these (66%) identified that the incomplete data led to validity issues, most commonly that these data were not missing at random and had the potential to introduce bias.
“Ten of these (66%) identified that the incomplete data led to validity issues, most commonly that these data were not missing at random and had the potential to introduced bias.12,34,43–50”
From The quality of social determinants data in the electronic health record: a systematic review (2021) · cites this paper as [48]
The Abstract says racial variation in data quality could introduce bias into spinal cord injury health-disparity research, and the Conclusion calls for further study of whether non-response bias affects that research. The paper does not establish that the data were missing not at random. The ‘ten of these (66%)’ count is the citing authors’ synthesis, not a result reported by this source. (LLM, conf=0.82)
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- Authors
- Chen, Y., Lin, H.-Y., Tseng, T.-S., Wen, H., & DeVivo, M. J.
- Affiliations
- University of Alabama at Birmingham (US)
- Louisiana State University Health Sciences Center New Orleans (US)
- Corresponding author
- Chen, Yuying
- Venue
- Topics in Spinal Cord Injury Rehabilitation
- Publisher
- American Spinal Injury Association
- Published
- 2018-03
- Volume
- 24
- Issue
- 2
- Pages
- 110-120
- ISSN
- 1082-0744 (ISSN-L)
- PMC
- PMC5915102
- OpenAlex
- W2800499454
- Cited by
- 10
- References
- 31
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 2 · 2023: 2 · 2022: 1 · 2021: 1
- FWCI
- 0.57
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Topics in Spinal Cord Injury Rehabilitation (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- U.S. Department of Health and Human Services
- Australian Government
- Administration for Community Living
- National Institute on Disability, Independent Living, and Rehabilitation Research (90DP0083)
- Topics
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Health Sciences › Medicine › Pathology and Forensic Medicine › Spinal Cord Injury Research
- Social Sciences › Health › Health disparities and outcomes
- Keywords
- spinal cord injury, racial disparities, response completeness, missing data, data quality, non-Hispanic blacks, Hispanic Americans, health disparities, patient-reported outcomes
- MeSH terms
- Adult, Data Collection, Disability Evaluation, Female, Follow-Up Studies, Health Status, Hispanic or Latino, Humans, Male, Middle Aged, Minority Groups, Pain, Socioeconomic Factors, Spinal Cord Injuries, Bias, Databases, Factual, Black People, White People, Health Status Disparities, Lost to Follow-Up
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