Cara James

Cara James

President and CEO, Grantmakers in Health

Dissertation Title:  "End Stage Renal Disease (ESRD): Factors Affecting Patient's Treatment and Care Assessments"

Nearly 455,000 people in the United States are living with ESRD, and more than 100,000 people are diagnosed each year. ESRD patients receive a transplant, dialysis, or both, although most receive some form of dialysis, which requires them to spend an exorbitant amount of time at dialysis facilities. Patient and facility characteristics can lead to differential experiences and treatment outcomes. This dissertation seeks to better understand the ESRD patient experience by examining the relationship between information sources and transplant decisions and the impact of dialysis facility characteristics on patient ratings of satisfaction and other quality indicators.

The first study hypothesized that observed racial disparities in renal transplant preferences and certainty were due in part to differences in information sources. The results of this study suggest that patients with more sources of information are more likely to want a transplant, and to be certain of that decision. Black patients had fewer sources of information than whites, and had lower expectations for a much better quality of life following a transplant. Blacks were also less certain of their transplant decision. However, after adjusting the results for sources of information this difference in certainty decreases. Increasing the amount of information all patients receive can improve treatment decisions and reduce disparities.

The second study sought to develop a case-mix adjustment model for use when comparing patient assessments of care among hemodialysis providers. The results of this study suggest that consumer assessments of care should be adjusted for patient age, education, and self-reported health status. The results also suggest that language spoken at home should also be considered as an adjuster, but more research is needed to say definitively whether it should be included in a case-mix adjustment model. These results show that adjusting patient assessments of care for patient mix is important to ensure equitable comparisons of care.

The final study examined the relationship between dialysis facility size, chain affiliation, staffing practices, age, and competition on patient assessments of care, deaths, transfers, and anemia management. Study results found a significant relationship between facility characteristics and both patient assessments of care and other quality measures.

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Dissertation Committee Member