The Importance of Consistent Transplant Education among ESRD Patients
Educators of a dialysis education program include kidney transplantation when teaching patients about treatment options for end stage renal disease (ESRD), but if the educator does not have first-hand knowledge of kidney transplantation, it may be difficult to convey all of the important aspects of this treatment option, potentially leading to a lack of understanding and/or misconceptions regarding transplantation for some patients. This, coupled with patients’ preconceived ideas about kidney transplantation, may cause certain patients who would otherwise be interested in, and good candidates for transplantation to not consider this treatment option. Therefore, it is imperative to incorporate a thorough, consistent overview of transplantation into every kidney patient’s education curriculum.
Issues affecting transplant education and pursuance
One important factor that contributes to inconsistency in transplant education is a lack of familiarity with the transplant referral and waitlist process. Empowering patients with the right questions to ask and tips for communication is a second factor that is important. Patients are often uncomfortable asking family members or friends for a living donation and may then view deceased donation as their only transplant option. Patients may not be aware of the complex evaluation process involved in living or deceased donor transplantation. Third, patients may be unaware of the potentially lengthy wait-time involved for a donor kidney to become available. Additionally, patients may be fearful of surgery due to a difficult previous surgical experience—presenting an inherent psychological block. Finally, treatment costs and/or financial concerns, a lack of understanding of health insurance and its complexities relative to kidney transplantation, and other social determinants of health (SDOH) or life challenges may overwhelm patients in the moment and deter them from considering kidney transplantation.
The transplant process: What patients need to know
In addition to receiving thorough education on kidney transplantation as one of several treatment options available for kidney disease, patients should be made aware of the following:
- A referral appointment does not guarantee inclusion on the waitlist. Attending a transplant center referral appointment does not automatically place a patient on the center’s waitlist. Many patients leave their referral appointment believing they are then on the list; however, in actuality, subsequent tests and a multidisciplinary care team discussion are needed to determine waitlist placement. Patients will receive formal notification if or when they are placed on a list.
- Waitlist status is fluid. Placement on a center’s waitlist is not a “locked-in” status. Comorbidities, hospitalizations and other health events can alter a patient’s waitlist status. Clinic and transplant center communications should be ongoing and include patients so they are aware of any changes in waitlist status and why. (Read this DMI post for more information.)
- Dialysis adherence often improves transplant success. Patients who are compliant with their dialysis treatments may be more likely to have successful transplantation outcomes. Adherence to their dialysis treatment schedule, weight and diet guidelines, medications and other medical recommendations may help patients stay healthier and prepare them for the transplant surgical procedure.
- Living donor transplantation outcomes are superior to deceased donation transplantation. Despite most patients’ hesitancy to ask for a living kidney donation, patients should be encouraged to discuss it with family and friends and to explain the advantages of a living donation. Patients and family members should know that shared genetic markers can improve transplantation success. Likewise, understanding how critical time (for the kidney) can be in organ transplantation is also important. Increased time out of the body is associated with cellular-level injury to the organ that may impact transplant outcomes over time.
When educating patients about ESRD treatment options, “option” is the key word. We should provide patients with the knowledge and understanding they need to choose a treatment option that allows them to have the highest quality of life possible based on their individual circumstances, desires and goals. With April being National Donate Life Month, it is timely to make certain that transplant is not just included as an option but thoroughly explored with the patients, along with dialysis modalities and conservative management to fully address common misconceptions, issues and concerns and help patients make the best choice for themselves.