Messages in Bottles: Why Pretransplant Care Coordination Remains so Difficult

See Clinical Research on Article 106352.

The contemporary era of kidney transplantation in the United States offers plenty of opportunities worth being proud of. Kidney transplant volume has grown at 3% to 4% every year for the last several years,¹ with patient and graft survival outcomes remaining excellent. Although innovations in transplant immunosuppression are taking a long time to be realized, closer attention is finally being paid to patient reported outcomes, focused on the long-term consequences and complications of immunosuppression exposure. Despite these achievements, one facet of the transplant process that continues to trouble clinicians, researchers, and policy makers are the durable inefficiencies, disparities, and overall opacity of what is generically termed “access” to kidney transplantation.

The bill of indictment is a familiar one—the cultural and institutional silos between transplant centers, dialysis facilities, and general nephrology practices, combined with heterogeneous patient selection criteria and referral or evaluation workflows across ∼250 different kidney transplant programs are practically a recipe for inefficiency and a lack of transparency upstream from waitlisting. A study of 9 transplant centers in the southeastern United States showed that a surprising proportion of patients (50%) who were referred for a transplant evaluation never even started the evaluation, and the rate of waitlisting among those who did start an evaluation was low.² Rates of waitlisting among patients with end stage kidney disease have failed to improve over the last 2 decades³; there may be some reason to suppose that waitlisting rates as a percentage of the total end stage kidney disease population may be falling.⁴ Of the 94,000 patients currently waitlisted for kidney transplantation, around 46,000 are waitlist inactive. Although the fate of patients who either start or have a status change to waitlist inactive has not been as robustly examined, previous studies show that the waitlist inactive status alone substantially attenuates the likelihood of receiving a transplant⁵ and candidates with waitlist inactive status are more likely to be removed for deterioration or death.⁶

Consider how this byzantine “system” must look from the vantage point of a patient or family member (or a referring physician)—a patient can get “referred” to a transplant program, but that referral might fail to advance for any number of reasons. Perhaps the referral was sent but not received, the information provided was incomplete, the patient’s contact information was not correct, the patient (reasonably) didn’t answer a call from an “unknown caller ID” (the transplant center), or perhaps an initial appointment session date was not transmitted, inadvertently missed, or rescheduled without full awareness. Any of these outcomes, unremedied, can consign a patient to the purgatory of “evaluation ongoing” or condemned to “unable to contact,” or “lost to follow-up,” any of which imply (whether justified or not) a relationship which first requires some repair. In addition, patients requiring dialysis have a host of vicissitudes to cope with, such as digital divides, transportation insecurities, insurance changes (which may have implications for center-specific transplant coverage), unexpected hospitalizations, unscheduled access procedures, physical limitations related to dialysis treatments and attendant comorbidities, and the many other tasks and demands of living one’s life. Initiating an evaluation entails diagnostic testing (usually scheduled on the precious few “non-dialysis” days), and assessments by at least a half-dozen different disciplines often scheduled on different (non-dialysis) days. The few who navigate this gamut of hoops and hurdles may finally be waitlisted “active,” ostensibly with the hope of receiving an organ offer after some period of waiting time, though a clear and accurate projection of any individual’s median waiting time turns out to be elusive,⁷ and starting out or transitioning to “inactive” status for any reason may provoke wonder as to whether, in such circumstances, one is really being “waitlisted” for anything at all. Framed thus, the select few that successfully navigate this complex, confusing, heterogeneous, and often opaque process to receive a kidney transplant are the remarkable ones.

In an exploratory mixed methods study canvassing end-users on their assessments of the effective implementation and use of electronic kidney transplant referral platforms, Blythe et al.⁸ offer some illumination where light has been largely absent. As befits an initial excursion into the topic, the study has the following limitations: (i) limited geographic scope with respondents overweighted to dialysis facility staff with uncertain generalizability, (ii) conflating personal experiences of several different electronic referral platforms with varying functionality and bidirectional use into unified impressions, and (iii) self-selection of interested respondents likely leading to bias favoring over-representation of those with defined and perhaps polarized views on the topic. Since transplant referral documentation from dialysis facilities has historically been assembled manually and sent via fax to transplant centers, it is unsurprising to find that dialysis clinic staff preferred electronic referrals and a willingness to continue to use and integrate them into their regular workflows by large margins. Transplant center personnel were less enthusiastic about electronic referrals in practice, as efficiency gains realized by dialysis clinic staff were not matched by transplant center electronic health record platform integration. This lack of seamless program interfaces and variable bidirectional use may explain why both clinic and center staff were less impressed with referral platforms as a communication tool (with clinics or patients), and why transplant personnel were largely skeptical that these platforms (alone) will yield efficiencies in navigating the transplant evaluation process. To this extent, electronic transplant referral platforms still resemble a scaled deployment of so many “messages in bottles,” with ultimate dispositions not (reliably) known.

Still, modest progress is at least not regressing. Between Organ Procurement and Transplantation Network modernization revisions to the collection of and access to critical data, a rekindled interest on the part of Centers for Medicare and Medicaid Services in prewaitlist metrics⁹ and improvements in electronic transplant referral capabilities, we may yet arrive at a system where no referral is merely returned to the sender.

Disclosure

BEH is a full-time employee of Fresenius Medical Care. BEH has equity stake and/or consulting arrangements with Interwell Health, Revalia Bio, Nephronomics, Klinrisk.