Education Is Necessary but not Sufficient for Navigating Evaluations for Transplantation

The purpose of an evaluation for potential listing for organ transplantation is to gain access to a life-sustaining and life-improving organ transplant, but the objective of the evaluation is different for patients versus providers. For transplant clinicians, the objective is risk stratification and potential risk mitigation aimed at good outcomes peri- and post-transplantation. For patients, the objective is to complete the seemingly innumerous and often obscure steps necessary to become listed, stay alive, and hopefully feel better. Thus, at the start, we have different driving forces influencing provider's and patient's actions.

Education on the evaluation process is often described in linear terms; “Here is a list of all the things that need to get done for the evaluation…” However, transplant evaluations are complex algorithms with ever evolving thresholds for acceptable levels of risk. Not surprisingly, as a result, candidates and their support systems report considerable feelings of being overwhelmed, uncertainty, ambivalence, powerlessness, and fear.^1-3 Due to ambiguity and a long history of structural discriminations, many also report mistrust in the healthcare system, payors, healthcare providers, and transplant itself.^1,4 Patient-level factors can also impact the patient's ability to successfully navigate these complex processes that include socioeconomic factors, mental health issues, substance use/abuse histories, cognitive impairments, and limited health literacy. ⁵ While much of the data on patient navigation and completion of evaluations for potential listing are in kidney candidate populations, it should be noted these issues are not unique to kidney candidates and require organ specific consideration.^6-8

What should be done to improve the transplant evaluation process to help more patients achieve organ transplantation? Valuable interventional research has been conducted to date resulting in small but important improvements (eg, navigators, education).^9,10 What is evident from prior interventional work is that education is necessary but not sufficient. Education is essential for informed consent, associated with improved transplant knowledge and small but important patient-level steps in completing the transplant evaluation, and both patients and their support systems consistently vocalize wanting more education on transplant.^1,10-12 However, optimal timing, content, forum of delivery, or other factors have not been optimized for the purpose of helping patients navigate the evaluation process or robustly improve listing outcomes. Also, across clinical populations outside of organ transplantation, clinical providers provide health-based education on prevention, treatment, and management of health-related issues. Yet many patients still struggle to perform the behaviors necessary for effective health management (eg, weight loss in obesity, smoking cessation, medication adherence). And the more complicated the process, the more likely the patient will struggle to perform the health-related behavior. ¹³

While different populations have unique and nuanced factors contributing to engagement and participation in health-related behaviors, what transplant providers can learn from other populations are the importance of underlying patient health beliefs in relation to health behaviors. Applying modern behavioral theory, such as the Health Belief Model, there are underlying belief mechanisms likely negatively impacting patients’ and their support systems’ ability to successfully navigate the complex transplant evaluation process. Given the considerable selection biases inherent in organ transplant process, improving our understanding of these beliefs at earlier stages in the process will be essential to develop targeted intervention aimed at engaging those most vulnerable. Continuing to improve our understanding and engagement of the broader network of stakeholders (eg, lay care partners). This includes also understanding support networks health-related beliefs and behaviors in relation to patient progression through the evaluation process. We should consider novel research methodologies for multicomponent interventions (eg, Multiphase Optimization Strategies ¹⁴ ). These methods allow for more rapid implementation while optimizing outcomes. While there have been wonderful efforts to date, improving our understanding of patient-level mechanisms associated with access to and completion of the evaluation for listing is a necessary next step to develop targeted interventions aimed at overcoming patient-level barriers. Education should continue to be a staple of the evaluation process but developed to target the individual and occur within a multicomponent intervention aimed at addressing multiple barriers.