Opportunities for Shared Decision Making in Kidney Transplantation

Abstract

Health researchers and policy-makers increasingly urge both patient and clinician engagement in shared decision making (SDM) to promote patient-centered care. Although SDM has been examined in numerous clinical settings, it has received little attention in solid organ transplantation. This paper describes the application of SDM to the kidney transplantation context. Several distinctive features of kidney transplantation present challenges to SDM including fragmented patient-provider relationships, the timesensitive and unpredictable nature of deceased organ offers, decision-making processes by transplant providers serving as both organ guardians (given the organ scarcity) versus advocates for specific patients seeking transplantation, variable clinical practices and policies among transplant centers, and patients' potentially compromised cognitive status and literacy levels. We describe potential barriers to and opportunities for SDM, and posit that SDM is feasible, warranting encouragement in kidney transplantation. We propose strategies to promote and overcome obstacles to SDM in kidney transplantation. We contend that engagement in SDM can be facilitated by re-organization of clinical care, communication and education of providers and patients.

Reduced Racial Disparity in Kidney Transplant Outcomes in the United States from 1990 to 2012

“…13,[17][18][19] Standardized transplant education, which incorporates the latest research findings, might also help to improve transplant knowledge and communication among black patients, their families, and health-care providers not directly involved in the transplant process (e.g., primary care providers and general nephrologists). 15,19,28 Our study was limited by the variables captured in SRTR, including provider-reported race, which has the potential for misclassification bias. We were also unable to account for individual-level patient income, which may be associated with differences in transplant outcomes.…”

Long-term quality of life after liver donation in the adult to adult living donor liver transplantation cohort study (A2ALL)

“…Therefore, it may be beneficial to consider ways that transplant teams can provide pre-donation education that is more appropriate across the full range of socioeconomic backgrounds and health literacy levels [47]. Such efforts can lead to improvements in informed consent and shared decision making, which would likely have downstream impacts on clinical outcomes and HRQOL [48]. These efforts may also lead to greater equity in access to living donor transplantation for transplant candidates and potential donors who have lower educational attainment and socioeconomic status.…”

iChoose Kidney

“…There are many other important decisions that patients with kidney disease must make with the help of their provider, including the decision to choose peritoneal dialysis vs. hemodialysis, whether to initiate and complete transplant evaluation workup, or whether to seek a transplant at one center vs. another [19]. In addition, mortality is not the only important outcome for patients.…”

“…Nearly one-third of ESRD patients are reportedly not informed of transplantation as a treatment option at the start of ESRD, and uninformed patients have a 53% lower rate of transplant [18]. Even when patients choose transplantation, it is unclear whether the decision is a shared decision between both patient and provider [19]; further, the timing and comprehensiveness of the information about ESRD treatment modalities is unclear [20]. …”