# Technological Innovations for Live Kidney Donor Follow-up Care Management

> **NIH NIH K01** · JOHNS HOPKINS UNIVERSITY · 2020 · $157,248

## Abstract

Project Summary
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.

## Key facts

- **NIH application ID:** 9971521
- **Project number:** 5K01DK114388-04
- **Recipient organization:** JOHNS HOPKINS UNIVERSITY
- **Principal Investigator:** Macey Leigh Levan
- **Activity code:** K01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $157,248
- **Award type:** 5
- **Project period:** 2017-08-15 → 2022-07-14

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9971521

## Citation

> US National Institutes of Health, RePORTER application 9971521, Technological Innovations for Live Kidney Donor Follow-up Care Management (5K01DK114388-04). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/9971521. Licensed CC0.

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