Improving transplant education in the dialysis setting: the “explore transplant” initiative

A total of 70% of all United States end-stage renal disease (ESRD) patients—more than 350,000— are on some form of dialysis.1 Although dialysis is life-saving, the sur-vival, quality-of-life, and cost-saving ben-efits of receiving a transplant over remain-ing on lifetime dialysis have been clearly established.2-7 After 5 years, only 35% of dialysis patients are still living, com-pared with 70% to 80% of patients who receive a deceased or living-donor trans-plant.1 Thus, to promote ongoing quality improvement, the Centers for Medicare and Medicaid Services (CMS) Conditions for Coverage (CfC) for ESRD Facilities mandate that accredited dialysis centers provide evidence of transplant education, track patients' transplant referrals and status on the waiting list, and communi-cate with transplant facilities regularly (Table I).8 To accomplish these CMS mandates, some responsibility for transplant education falls on the shoulders of dialysis providers. Compared with education in a transplant center, educating patients about transplant in a dialysis center has a different set of advan-tages and difficulties. Since kidney patients are at dialysis centers weekly or monthly, educators have multiple opportunities for transplant conversations, often over many years. Thus, education can occur when patients are most healthy and interested in learning about it. Dialysis providers also can educate all potential transplant candidates, not just those who present at the transplant center. However, dialysis providers also may have insufficient time or training to administer transplant education,9 may not have access to transplant education materials,10-12 work in dialysis centers unsupportive of transplant discussion, or have a fi nan-cial disincentive to refer for transplant.13 For example, patients at for-profi t dialysis centers have been shown to receive less transplant-related education than patients at non-profit dialysis centers.14 Previous research has shown that dial-ysis patients' knowledge about transplant is poor,15-17 and that patients presenting for transplant evaluation lack knowledge about the benefits of transplant over remaining on dialysis.15, 18 Patients commonly have con-cerns about involving and risking a living donor's health, or fear that the transplanted kidney may fail.19-21 Many patients are also unaware that living donors report positive benefits from donating, including getting to help a loved one and having increased self-worth.22, 23 Multiple randomized controlled trials have shown that improved education about deceased and living donation can sig-nificantly increase patients' knowledge and informed transplant decision-making.24-28 However, with dialysis patients varying in their level of readiness regarding pursu-ing deceased or living-donor transplant, transplant education must be tailored by a patient's level of transplant readiness to support each individual in making an informed transplant choice. Precontemplation: Not considering or not ready to pursue deceased or living-donor transplant. Contemplation: Considering pursuing deceased or living-donor transplant. Preparation: Planning to pursue deceased or living-donor transplant. Action: Have contacted the transplant center and are being evaluated or hav-ing living donors evaluated. Maintenance: Have already contacted the transplant center and have been list-ed or found a matching living donor. Transplant education commonly rec-ommends that patients take actions such as calling a transplant center to initiate evaluation or asking loved ones to con-sider being living donors. These recom-mendations assume that a patient is very close to pursuing transplant and may cause patients who have not yet decided to feel pressured or stop learning. The TTM theory posits that informed transplant deci-sion-making occurs when patients get the opportunity to voice and receive answers to their questions matched to their level of readiness to consider whether transplant could improve their health or quality of life. For these reasons, the ET program assesses a patient's level of transplant readiness and then provides factual infor-mation and recommendations tailored to each patient's stage in their transplant deci-sion-making. There is no one right answer about whether to pursue deceased- or living-donor transplant. ET, therefore, recom-mends that all eligible dialysis patients “explore the option of transplant” and make an informed choice. The program has many advantages for both dialysis provid-ers and the patients they serve (Table II). The program helps patients think about what might motivate them to pursue trans-plant, addresses commonly held concerns about transplant and involving a living donor, shares real-life transplant stories of donors and recipients, and presents a series of small actions that an interested patient could take, if they were interested, to pursue transplant. All medical content of ET has been approved by medical experts in dialysis and transplantation. The ET program won the National Association of Transplant Professionals' (NATCO) Quality of Care Award in 2009. Meeting One: Could getting a trans-plant add anything to this patient's quality of life? Meeting Two: What would it be like to undergo transplant evaluation and surgery? Meeting Three: What would it be like to involve a living donor? Meeting Four: What is the right Transplant Action Plan for this patient? A total of 18 ESRD networks support the federal government in assuring appro-priate care for dialysis patients who receive treatment in certified Medicare facilities in all 50 states. Dr. Waterman partnered with CMS ESRD Network 12, the Heartland Kidney Network, in conducting a transplant education Quality Improvement Initiative in 2009. The Heartland Kidney Network over-sees 273 facilities providing care for more than 13,000 dialysis patients in Missouri, Kansas, Nebraska, and Iowa. The purpose of this initiative was to enhance dialysis providers' transplant knowledge and abil-ity to educate their own patients about deceased and living donation. Of the 273 dialysis centers in the Heartland Network, 201 (74%) sent representatives to the train-ing, with 294 dialysis providers becom-ing trained to administer ET to patients in their facilities. Clinic administrators, nurses, social workers, dieticians, admin-istrative assistants, and dialysis technicians all attended the trainings. During the One-Day Provider Training, dialysis providers discussed bar-riers they were facing in delivering trans-plant education in their facilities. Barriers mentioned included patients being over-whelmed coping with dialysis, having fear and misinformation about transplan-tation, and not understanding they were potential transplant candidates. Provider barriers discussed included having lim-ited medical training in and knowledge about transplant, and lack of time for education. During the training, providers learned how to tailor education based on a patients' readiness to pursue transplant and improved their transplant knowledge and relationships with local transplant centers. They also learned how to administer the four ET meetings with patients and how to track what transplant education occurred in the case of an audit. Providers who completed the training received copies of all the ET print and video materials for dissemination to their patients. Of dialysis providers who attended the training, 94% would recommend it to another health professional. After the training, dialysis providers revealed several strategies they used to suc-cessfully disseminate ET education in their facilities. Some clinic administrators allot-ted more staff time to conducting trans-plant education. Multidisciplinary teams were created to share transplant education responsibilities across shifts and patients in order to reduce the education burden placed on any particular staff member. Providers planned to start small and educate 1 to 5 patients with previously expressed inter-est in transplant to learn how the program would be received. Education about living donation was given to patients already listed on the waiting list to remind them about the possibility and benefits of a living-donor transplant. Finally, patients on home treat-ment modalities were mailed brochures and videos along with their monthly labs to share with their families. In an environment focused on pro-viding excellent dialysis care, transplant education can become a lower priority. However, since transplants within the fi rst 6 months of initiating dialysis result in the best health outcomes,34, 35 one Healthy People 2010 proposed goal is to “increase the proportion of dialysis patients wait-listed and/or receiving a deceased donor kidney transplant within one year of ESRD start.”36 Transplant educators need to meet all patients where they are in their transplant decision-making and educate them about all their ESRD treatment options. This training was conducted under Net-work contract #HHSM-500-2006-NW012C with Centers for Medicare and Medicaid Services, Baltimore, Md. The content pre-sented does not necessarily refl ect CMS policy, and the author assumes full respon-sibility for the accuracy and completeness of the ideas presented. For more informa-tion on the “Explore Transplant” education-al program, call (888) 454-9445 or write to exploretransplant@dom.wustl.edu.