Dr. Macey L. Henderson, JD, PhD, is research faculty in the Department of Surgery at Johns Hopkins School of Medicine. She seeks a Mentored Research Scientist Development Award in order to gain training and experience in patient-oriented research, qualitative methods, mHealth intervention development, and RCT design. Live donor kidney transplantation (KT) offers patients with end-stage renal disease (ESRD) timely treatment with superior outcomes to dialysis or deceased donor KT. But for the 6000+ live kidney donors (LKDs) yearly who make the sacrifice, and the 100,000+ living with one kidney, nephrectomy represents an elevated risk of kidney disease and other comorbidities. Dr. Henderson is a previous kidney donor and has dedicated her career to improving the lifelong donor experience. Currently, the most striking gap in the care of LKDs is the lack of regular medical follow-up. While hardly adequate for true care of LKDs (policy only requires follow-up to 24 months), implementation of even this rudimentary requirement has proven nearly impossible: LKDs between 2013-2015 still have only 68%, 62%, and 53% successful follow-up at 6, 12, and 24 months, with no further improvement since the policy requirement, even in the face of disciplinary action to centers who do not meet follow-up benchmarks: clearly transplant centers currently lack the tools to improve LKD engagement. Given the embarrassing failure of the current system of LKD follow-up, alternative approaches are of the utmost urgency for the medical community to uphold its obligation to care for these altruistic, at-risk individuals. Follow-up barriers cited by transplant centers, including administrative burden, cost, and lack of patient engagement, may be overcome by leveraging electronic communications and mobile health (mHealth) technologies which are convenient, low cost, and easily scalable.
The aims of the project are: 1) to analyze preferences for and barriers to adoption of mHealth by LKDs and transplant providers, 2) to develop a functional mHealth system to support LKD follow-up and engagement, and 3) to pilot the mHealth system and design a future randomized control trial of this intervention. This proposal gives Dr. Henderson the training required to complete the proposed research. This knowledge can support the development of patient-oriented ESRD prevention strategies, promote health maintenance behaviors, and lay the foundation for a randomized controlled trial of our novel mHealth system. Our findings will address a critical knowledge gap in how follow-up and patient-engagement for LKDs can be improved. Conducting this study will expand Dr. Henderson's skillset to include patient-oriented research, qualitative methods, mHealth intervention development, and RCT design enabling her transition to independence.

Public Health Relevance

The 6000+ individuals who make the sacrifice to become live kidney donors (LKDs) each year are at an elevated risk of kidney disease and other related comorbidities. While it is impossible to eliminate these risks, it is critically important to minimize these risks by providing follow-up care, which historically has been difficult to achieve. The goal of this project is to analyze preferences for and barriers to adoption of mobile health (mHealth) by LKDs and transplant providers for post-donation follow-up care management and engagement, and to design a patient-oriented and functional system to pilot in the clinical setting.

National Institute of Health (NIH)
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Research Scientist Development Award - Research & Training (K01)
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Study Section
Kidney, Urologic and Hematologic Diseases D Subcommittee (DDK)
Program Officer
Rankin, Tracy L
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Johns Hopkins University
Schools of Medicine
United States
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Holscher, Courtenay M; Kmd, Sunjae Bae; Thomas, Alvin G et al. (2018) Early Hypertension and Diabetes after Living Kidney Donation: A National Cohort Study. Transplantation :
Van Pilsum Rasmussen, Sarah E; Henderson, Macey L; Bollinger, Juli et al. (2018) Perceptions, motivations, and concerns about living organ donation among people living with HIV. AIDS Care 30:1595-1599
Henderson, Macey L; DiBrito, Sandra R; Thomas, Alvin G et al. (2018) Landscape of Living Multi-organ Donation in the United States: A Registry-Based Cohort Study. Transplantation :
Purnell, Tanjala S; Luo, Xun; Cooper, Lisa A et al. (2018) Association of Race and Ethnicity With Live Donor Kidney Transplantation in the United States From 1995 to 2014. JAMA 319:49-61
Henderson, Macey L (2018) Social Media in the Identification of Living Kidney Donors: Platforms, Tools, and Strategies. Curr Transplant Rep 5:19-26
Bowring, Mary G; Massie, Allan B; Henderson, Macey et al. (2018) Consent and labeling in the use of infectious risk donor kidneys: A response to ""Information Overload"". Am J Transplant 18:2608-2609
Henderson, Macey L; Adler, Joel T; Van Pilsum Rasmussen, Sarah E et al. (2018) How Should Social Media Be Used in Transplantation? A Survey of The American Society of Transplant Surgeons. Transplantation :
Henderson, Macey L; DiBrito, Sandra R; Thomas, Alvin G et al. (2018) Landscape of Living Multiorgan Donation in the United States: A Registry-Based Cohort Study. Transplantation 102:1148-1155
Ruck, Jessica M; Holscher, Courtenay M; Purnell, Tanjala S et al. (2018) Factors associated with perceived donation-related financial burden among living kidney donors. Am J Transplant 18:715-719
Flechner, Stuart M; Thomas, Alvin G; Ronin, Matthew et al. (2018) The first 9 years of kidney paired donation through the National Kidney Registry: Characteristics of donors and recipients compared with National Live Donor Transplant Registries. Am J Transplant 18:2730-2738

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