My current research interests focus on improving public awareness of living donation and identifying outcomes of inactive patients on the organ transplant waitlist. The Center for Living Organ Donors represents a novel care model that is based on the long-term health of prior living donors and leverages donor experience through trained ambassadors who share their stories with the public at large. We aim to improve knowledge of preventative health measures of individuals with chronic disease leading to organ failure, particularly in underserved communities. I work closely with YanHong Deng, MPH, and Geliang Gan, MS from the Yale Center of Analytical Science to use novel multi-state models to study how patients move from inactive to active status and vice versa. The only way a patient can have access to a deceased donor organ is through active status and we hope to improve care coordination of inactive patients to resolve issues that will confer access to transplants.
Specialized Terms: Living donor awareness, disparities in waitlist outcomes
Living kidney donation has been a primary clinical and academic interest in my career. Yale-New Haven Hospitals' novel Center for Living Organ Donors is a care model that provides an opportunity to study how to improve public awareness of living donation. Several studies are underway that focus on improving individual access to living donation (YNHH 15-second connection; https://www.ynhh.org/videos/center-for-living-donors-finding-donor-238) and provide focused education to individuals in underserved communities related to preventive measures that may abrogate the development of end-organ failure.
We have completed a prospective, multi-center study of 307 living kidney donors through a grant from the Greenwall Foundation. The study looks at an individuals' perception of living a donation, their risk tolerance, and if relationship closeness impacts a donor's willingness to take risks. Several publications and international presentations have come from the ongoing research:
1. Thiessen C, Gannon J, Li S, Skrip L, Dobosz D, Gan G, Deng Y, Kennedy C, Gray D, Mussell A, Reese P, Gordon E, Kulkarni S. Quantifying Risk Tolerance Among Potential Living Kidney Donors with the Donation-Specific Risk Questionnaire. American Journal of Kidney Diseases 2021;87(2):246-258.
2. Kulkarni S, Thiessen C, Formica R, Schilsky M, Mulligan D and D’ Aquila R. The long-term follow-up and support for living organ donors: A center-based initiative founded on developing a community of living donors. American Journal of Transplantation 2016;16(12):3385-3391.
3. Thiessen C, Gordon EJ, Reese PP, Kulkarni S. Development of a Donor-Centered Approach to Risk Assessment: Rebalancing Non-maleficence and Autonomy. American Journal of Transplantation 2015;15(9):2314-2323.
4. Thiessen C, Kim YA, Formica R, Bia M and Kulkarni S. Confidentiality and availability of an “alibi” for potential living kidney donors in the United States. Journal of Medical Ethics 2015:41(7):506-510.
Access to transplantation encompasses the referral, listing, and transplant itself. One area that has not been studied extensively is patients who are listed but remain inactive on the waitlist. Approximately a third of all listed patients are inactive, which means they are not eligible to receive deceased donor organ offers. Collaborating with YanHong Deng, MPH, and Geliang Gan, MS from the Yale Center for Analytical Sciences, we have used novel multi-state models to analyze predictors of inactive to active transitions. For kidney transplant patients, there are clear racial disparities in resolving issues of inactive status which we hope will lead to better care coordination between transplant centers, dialysis units, and providers to improve access to transplantation. Our first major publication on the topic was published in JAMASurgery and we are currently working on applying this methodology to the liver transplant waitlist:
Kulkarni S, Ladin K, Haakinson D, Greene E, Geilang G, and Deng Y. Association of Racial Disparity with Access to Kidney Transplant After the Implementation of the New Kidney Allocation System. JAMASurgery 2019;154(7):618-625.
Delivery of Health Care; Kidney; Kidney Failure, Chronic; Liver; Nephrology; Risk; Transplantation; Living Donors
Behavioral Health; Health Care Management; Mental Health; Health Equity, Disparities, Social Determinants and Justice; Health Systems Reform