19 May Decision Aids and Resources for Transplant Patients
By: David Axelrod, MD, MBA
Patients with end stage organ failure face life-altering decisions. At the same time they may be overwhelmed by the clinical ravages of their disease. As a result, transplant centers evaluate patients when they are sick, fatigued, experiencing confusion from hypoxia or encephalopathy as well as being frequently scared, desperate, and confused by the complexity of transplantation.
While patients benefit from their evaluation visit to the transplant program, and likely experience a sense of relief after education sessions, many still struggle to understand all the information and in particular, available donor options and how those choices will impact their expected survival.
Consider renal transplantation. Patients need to choose whether or not to pursue renal replacement therapy, and if so, which modality. Next, they need to be motivated to initiate transplant evaluation, potentially seek out a living donor, consent to receive a DCD, HepB Core, HCV, or PHS high risk kidney, and finally, manage anxiety while waiting for the big day.
Transplant Centers should familiarize themselves with the variety of patient education/decision tools available so they can offer carefully evaluated resources to their patients to help alleviate stress and anxiety. These resources include videos, information packets, iOS based tablet education, web tools, and connections to peer resources. In both transplant and non-transplant specific studies, these well-designed tools improved patient empowerment, satisfaction and motivation.
In this blog post, we would like to highlight a few resources for transplant programs to consider:
- The National Kidney Foundation (NKF) has partnered with several leading educators to produce “The Big Ask/The Big Give” campaign (https://www.kidney.org/transplantation/livingdonors). This campaign is focused on living donation awareness and advocacy, and the site provides video testimonials, detailed information on living donation, and advice on how patients can ask someone to consider donating a kidney. It is free and the information can be easily downloaded and printed. This project is currently in pilot testing; however, the resources are already available. The site includes a new commercial featuring ‘Going in Style’ actors and directors.
For minority patients and potential donors, several excellent resources have been developed.
- For Hispanic patients, Informate: Living Kidney Donation for Hispanics/Latinos (http://informate.org) offers Spanish language instructions for potential living kidney donors. In a prospective trial, the site was shown to increase knowledge and demonstrated retention at 3 weeks. The site features testimonials, games, and telenovelas.
- The Living: About Choices in Transplantation and Sharing (Living ACTS) tool was developed specifically to address African American issues and concerns. This tool is currently in clinical trials in the Southeast U.S., targeting dialysis centers and AA patients. If successful, broader distribution of the tools will be available.
- The Explore Transplant (https://exploretransplant.org) website is targeted to potential recipients. It provides comprehensive transplant education for patients and caregivers. The program partners with staff at dialysis units to serve as transplant champions. Transplant programs often partner with their referring dialysis units to bring the program and materials to their center. Explore Transplant includes extensive living donor education and includes both web-based and printed information for patients and families.
Like all patients facing terminal conditions, those in organ failure want to know “how long will I live?” Educating patients on their predicted survival before and after transplant can be an important motivational tool, encouraging patients to pursue transplant care. Predictive survival tools help clinicians answer that question with accurate, specific information to patients given their own medical issues, expected local waiting times, and available options. XynManagement clients can use these tools to forecast an individual’s pre- and post-transplant survival, but other tools are available and some are reviewed below.
- My Transplant Coach (https://exploretransplant.org/our-education/my-transplant-coach/) was developed by Explore Transplant and XynManagement with assistance from Health Literacy Media. This iOS-based tool combines customized risk assessment and video education to appropriately explain and frame survival expectations given the various options for patients with ESRD. The application presents a complete transplant educational program incorporating the patient’s anticipated survival on dialysis, waiting for (and possibly receiving) a deceased donor transplant, and immediate living donor transplant. It also compares risk adjusted post-transplant survival with low and high KDPI organs, public health service (PHS) donors, and living donors in a downloadable, email enabled application. The application demonstrated significant benefit in an initial clinical trial and is now being updated in a beta phase. Unlike other calculators, it is self-contained, providing education, risk calculation, and links to pertinent data for patients in one location. The beta version is available for download.
- iChooseKidney (http://www.ichoosekidney.emory.edu) is an online risk calculator comparing a patient’s treatment options: transplant or dialysis, and transplant with a living or deceased donor. The data can be used for patient education by trained clinicians. There is an ongoing randomized trial to assess the benefit of this customized educational tool. The tool displays patient friendly graphics comparing survival with various treatment options (living vs. deceased donor transplant, dialysis vs. transplant).
- SRTR Liver Transplant Waiting List Outcomes Tool (http://www.srtr.org/reports-tools/waiting-list-calculator) provides patients and providers with risk-adjusted outcomes for patients listed for liver transplant. The data is DSA- and center-specific and easy to access, but is not accompanied by patient-focused education. Although it does not specifically address the potential benefit of accepting extended donor organs, the center transplant rate indirectly demonstrates the aggressiveness of the center in utilizing these organs. Additional risk calculators are in development for other organs by the SRTR.
Some peer networks provide options for patients and potential living donors to connect with other patients in similar circumstances.
- The NKF Peer program (https://www.kidney.org/patients/peers) is a telephone-based support network that connects interested patients and potential donors to transplant recipients and living donors. This resource provides patients with access to advocates to answer questions, allay anxiety, and improve donation rates.
- Similarly, the Donor Champion program pioneered at Johns Hopkins helps to educate family members to seek out living donors for loved ones on dialysis. Prospective evaluation has demonstrated improved living donor transplant rates. More information is available through Johns Hopkins and Dorry Segev, MD.
In summary, patients and families need access to a variety of reliable sources, and are frequently seeking these on their own. Transplant programs need to embrace this shift and provide patient-focused educational tools that move beyond traditional education classes and clinic visits. These resources are just some of the options for web and mobile based education, social media appeals, and peer to peer support. More education results in greater motivation, less resistance to change, and higher transplant rates. When accompanied by higher rates of living donation, these tools may lead to faster transplant rates, fewer deaths, and more satisfied patients.
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