Transplant Patients Help Each Other Prevent Cancer

By Amy D. Waterman

Contributors: Lorrinda Davis, Martha Gershun, Steve Okonek

For most organ recipients, having a functioning transplant provides new opportunities - a chance to live life without the constraints of dialysis, restrictive diets, low energy, and even the need for supplemental oxygen. After years of constant medical surveillance and the focused activity surrounding transplant, most patients are relieved to have fewer medical visits as the need for weekly monitoring by transplant professionals tapers off. The hope is that “all will be well,” with transplant patients discharged back to their primary care providers and specialists – nephrologists, cardiologists, pulmonologists, hepatologists – for routine monitoring.

As years pass, though, patients need to continue to monitor their health for the potential risks of taking powerful immunosuppressive medications. While these vital medications prevent organ rejection, they also weaken the immune system, increasing transplant patients’ risk of various conditions, including cancer. In fact, transplant recipients’ risk of developing cancer is 2-3 times that of the general population. According to one recent study, between 14 and 37.5% of solid organ transplant recipients will develop skin cancer within ten years following their transplant.

Relieved at the success of their transplant procedures, and enjoying better health with their new organs, preventing cancer is not top of mind for most transplant patients.

“However, years later, within our non-profit community of transplant patients we started learning that a lot of our friends were getting small skin cancers that had to be removed or even colorectal and lung cancer. Our leadership started to get a lot of questions about what transplant patients should be doing to monitor for and prevent cancer,” explained Lorrinda Davis, President of Transplant Recipients’ International Organization (TRIO). After determining that over half of their community members were unclear about how to monitor and manage their cancer risk, TRIO leadership created the Post-Transplant Cancer (PTC) Project, a web-based educational tool to help transplant patients more effectively monitor and manage their cancer risk.

Amy D. Waterman, Lorrinda Davis, and other TRIO leaders attend a national transplant meeting together to improve patient education and care.

TRIO leadership approached Dr. Amy Waterman, now Director of Patient Engagement, Diversity, and Education at Houston Methodist Hospital, to help design the tool, along with other medical professionals, health literacy experts, and members of the TRIO community. The resulting website allows visitors to manage their cancer risk by learning about risk factors for their type of organ transplant; symptoms to look out for; living with cancers that affect the majority of long-term transplant survivors; building an action plan to help manage post-transplant cancer risk; and where to go for more information, including links to helpful resources.

Transplant patients who were interviewed about the value of the website were very positive. One noted, “the interactive website may help extend recipients’ lives and well-being. I also recommend [it] to my professional colleagues.”

According to Waterman, “by providing an opportunity for patients to do their own research and learn how to manage their own risks, the PTC Project gives them a way to protect their health while relaxing and living their best post-transplant lives.”

The website has been very popular for transplant patients; In the first six months post-launch, there were 20,506 visits. The most-visited pages were “Cancer Risks by Organ Type: Introduction” (10,030 views), “Post-Transplant Cancer Types” (6,998 views), and “Cancer Life Phases” (5,685 views). Patients reported their overall experience with the website to be very good (4.3 out of 5.0), and, on average, they reported they were very likely to recommend the site to other transplant recipients (4.6).

This is one example of how a patient nonprofit organization identified an educational need missed by clinicians and successfully partnered with the medical community to fill that gap. TRIO succeeded in developing and disseminating a tool to help patients learn how to screen for one of their greatest risks. Other patient organizations could also be activated to identify and meet other unmet needs – thus enabling quicker treatment, better outcomes, and longer lives.

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Article Details
A Transplant Recipients International Organization Initiative to Improve Education About Posttransplant Cancer Risk, Prevention, and Treatment
James Gleason, Erica Ho, MPH, Rachyl Pines, Paula Gregorowicz, Emily H. Wood, MPH, and Amy D. Waterman, PhD
First published online March 29, 2022
DOI: .10.1177/15269248221087432
Progress in Transplantation

About the Author

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Dr. Amy D. Waterman is a national innovator, a Full Professor, and the Director of Patient Engagement, Diversity, and Education, representing both J.C. Walter Transplant Center at Houston Methodist Hospital and the Houston Methodist Research Institute. As a Health Services Researcher and Social Psychologist, Dr. Waterman conducts research in areas including how best to expand access to optimal treatments, reduce racial disparities, ensure informed decision-making, ensure patient-centered care, and improve health outcomes. She has published over 125 journal articles encompassing many components of clinical and translational research, including patient-oriented research, clinical trials, behavioral and multilevel interventional studies, development of new educational technologies, outcomes and health services research and implementation of best practices. She has designed and tested the efficacy of a suite of innovative educational resources including mobile decision aid applications, a digital storytelling application, and texting interventions about living donation. She has been the Principal Investigator on over 10 grants from the National Institutes of Health, the Health Resources and Services Administration, and the Agency for Healthcare Research and Quality. Her award-winning educational resources have been translated into multiple languages and delivered to patients in thousands of clinical settings in the United States, Canada and online. Her research has been supported by almost $30 million in grants and, in 2019, she received the American Society of Transplantation Clinician of Distinction Award for national influence in transplantation by a non-physician. Prior to joining the faculty at Houston Methodist Research Institute, she was a faculty member at the University of California-Los Angeles (UCLA) School of Medicine in Nephrology and Washington University School of Medicine in St. Louis in General Medical Sciences.