Process Variation in Liver, Kidney, and Pancreas Transplantation: A Multicenter Evaluation From the Consortium for the Holistic Assessment of Risk in Transplant

Abstract

Background.

Transplant center processes for determining candidacy are complex, poorly documented, ambiguous, and variable across centers. Opaque and nonstandardized transplant processes can compromise data collection and lead to inconsistent outcomes.

Methods.

To understand process variation and data quality in transplantation, we surveyed 8 abdominal transplant centers in an existing research consortium about their processes of care for liver, kidney, and pancreas transplants. We used the Systems Engineering Initiative for Patient Safety model to identify variation related to people, tasks, tools, environment, and processes.

Results.

Centers varied in their processes across phases of transplant care, including screening referral, waitlist maintenance, and posttransplant follow-up. Regarding referrals, transplant centers chose their locations for outreach to and education for referring providers based on historical density or by request (63%). Additionally, screening of referred patients for transplant evaluation varied across centers related to screening method, screening timing/attempts, and who determines eligibility. For patients declined for listing, only 25% of centers had a formal appeal process (liver only), and most centers had either an informal appeal process (liver: 50%, kidney and pancreas: 87.5%) or none (liver: 25%, kidney and pancreas: 12.5%).

Conclusions.

In light of increased national attention to improving data collection, processes of care, and workforce efficiency, our findings provide insight into processes that may inform effective transplant practices and identify targets for future interventions.

INTRODUCTION

Transplant center processes are poorly understood and highly variable across centers, in part due to the complexity and many people involved (eg, patients, family, physicians, advanced practice providers, social workers, coordinators).¹ Opaque and nonstandardized transplant processes can compromise data collection and lead to inconsistent or inequitable outcomes.^2,3 Poor data quality can adversely impact identification of suboptimal care or evaluating how changes in processes over time (eg, postintervention, policy changes, events) affect patient outcomes.

National efforts are underway to improve transplant data collection accuracy and consistency, such as the Health Resources and Services Administration Modernization Initiative.^4,5 Principles of health systems engineering may be useful to understand transplant center processes and improve data collection. Human factors engineering (HFE), a branch of health systems engineering, can provide fundamental insights into interactions in healthcare delivery, including human-human and human-technology.⁶ This sociotechnical approach to understanding these interactions can improve data quality in electronic health records and team cognition related to incorporating data into decision-making.⁷ For example, process mapping visualizes complexities of interactions between tools and people, and can assist with level-setting across teams to identify data inefficiencies, inaccuracies, and opportunities for improvement.

The goal of this study is to identify variation in transplant care processes and implications for data quality. We surveyed clinicians within a multicenter transplant research consortium and described similarities and variation in transplant policies and procedures across a group of geographically diverse transplant centers.⁸

MATERIALS AND METHODS

Study Population

The Consortium for the Holistic Assessment of Risk in Transplant (CHART) was established in April 2022 and uses an ongoing data collection and harmonization initiative for 13 transplant centers, with a focus on abdominal organs.⁸ The survey was administered to the 8 centers actively involved in CHART between December 2022 and June 2023 (centers 9 through 13 added after survey data collection). A leader from each center was responsible for survey completion based on center-level input from relevant transplant team members processes. This study was deemed exempt by the Duke University Health System IRB.

Surveys

We developed a questionnaire to ascertain: (1) transplant center characteristics and general processes of care, (2) organ-specific processes (liver, kidney, pancreas), and (3) assessment of potential live donors (Supplemental Material). Questionnaire items were informed by the Practical, Robust Implementation and Sustainability Model conceptual framework, a comprehensive model for the interplay between research and the real world, and existing literature related to transplant evaluation, waitlist maintenance, perioperative management, and posttransplant care.^9-11 Additionally, we incorporated clinical subject matter expertise from members of the CHART joint steering committee (nephrology, hepatology, pharmacy, surgery, organ-specific, and administrative leadership) to describe meaningful processes in transplant care. For transplant center characteristics, we evaluated staffing (eg, counts of types of providers, experience), demographics/cultural competence (eg, race, languages spoken), community outreach, and processes for each step in the transplant continuum of care (eg, referral, evaluation, waitlist, transplant, posttransplant). The surveys included 73 questions about each transplant step.

Analysis

We calculated descriptive statistics for the survey data on center-level characteristics. Results were used to create process maps for each center. The Systems Engineering Initiative for Patient Safety (SEIPS) model guided our examination of the components of the sociotechnical system for transplantation (Figure 1).¹² The SEIPS model examines 6 parts of a work system: (1) people, (2) tasks, (3) tools and technology, (4) organization, (5) internal environment, and (6) external environment. This work system undergoes a process that results in outcomes. Adaptations (ie, feedback loops) occur between outcomes, processes, and the work system itself. The SEIPS model harnesses HFE for process assessment within healthcare, and specifically within transplant evaluation.¹³

FIGURE 1.

Components of the sociotechnical system for transplantation for liver, kidney, and pancreas using the Systems Engineering Initiative for Patient Safety (SEIPS) framework.¹²

RESULTS

Study Population

The 8 centers surveyed included Duke University, Emory University, Johns Hopkins University, the Medical University of South Carolina, Northwestern University, the University of Alabama, the University of Minnesota, and Vanderbilt University Medical Center. We achieved 100% completion rate (Table 1). The mean number of pretransplant coordinators was 4 (range, 2–6) for liver transplants and 7 (4–11) for kidney transplants. Based on the average number of transplants per year from 2021 to 2023,¹⁴ the mean was 33.6 transplants/liver coordinator (range, 15.2–66.3) and 42.9 transplants/kidney coordinator (range, 24.6–91.4). Thirty-four percent of faculty/staff across all transplant centers were women (13%–70%). Regarding race and ethnicity, the mean percent and range of faculty transplant team members across centers was 63% White members (50%–88%), 3% Black members (0%–10%), and 9% Hispanic members (0%–40%). The mean number and range of people across centers who spoke a language other than English were 1 (0–8) coordinator, 2.7 (0–6) surgeons, 3 (0–9) hepatologists, and 3 (1–6) nephrologists.

TABLE 1.

Transplant team characteristics aggregated across 8 transplant centers for liver, kidney, pancreas, and live donor

	Min	Max	Mean
Team members, n
Social workers	4	13	7
Psychiatrists	0	4	1
Liver surgeons	2	8	5
Kidney surgeons	4	9	6
Pancreas surgeons	2	9	5
Live donor nephrectomy surgeons	2	5	4
Deceased donor organ procurement surgeons	3	12	7
Transplant nephrologists	4	9	7
Transplant hepatologists	3	12	7
Pre-coordinators: liver	2	6	4
Pre-coordinators: kidney	4	11	7
Post-coordinators: liver	3	9	5
Post-coordinators: kidney	4	13	8
Transplant pharmacists	1	5	3
Financial coordinators	2	7	4
Sex, women,a %	13	70	34
Race and ethnicity of staff,b %
White	32	94	69
Black	5	58	24
Hispanic	0	60	11
Asian	1	10	4
Native American	0	1	0
Other	0	4	1
Race and ethnicity of faculty,b %
White	50	88	63
Black	0	10	3
Hispanic	0	40	9
Asian	2	48	28
Other	0	30	6
Speak a language other than English,b n
Surgeons	0	4	2.4
Coordinators	0	8	1
Hepatologists	0	9	3
Nephrologists	1	6	3

^aSurvey included nonbinary responses and all centers were 0.

^bOne center did not report these data.

Step 1: Referral and Screening

The referral and screening step was defined as starting when a transplant center receives a referral and ending when a patient has been screened as ineligible or as eligible to proceed with evaluation (Figure 2). The referral and screening step of the transplant process is particularly complex because the people and internal environment components of the SEIPS work system involved extend outside of the transplant center and into the community, such as referring providers or dialysis centers (Table 2).

FIGURE 2.

Detailed flowchart for abdominal transplant process.

TABLE 2.

Liver transplant process and components of work system involved with each step

	Process
Work system component	Referral and screening	Evaluation	Committee meeting	Waitlist and onward
People	• Patient, care partner • Referring providers • Referral/intake specialist • Transplant assistants • Coordinators • Medicine/surgeon physician	• Patient, care partner • Coordinators • Medicine/surgeon physicians • Social workers • Dieticians • Pharmacists • Consultants	• Patient, care partner • Coordinators • Medicine/surgeon physician • Social workers • Dieticians • Pharmacists • Consultants	• Patient, care partner • Coordinators • Medicine/surgeon physician • Social workers • Dieticians • Pharmacists • Consultants
Tasks	• Outreach • Educational sessions • Reviewing intake information • Clarifying missing information • Patient communications	• Preeval summary • Evaluation clinic • Additional consultant appointments • Labs, imaging, procedures	• Pre-committee summary • Patient presentations • Team discussion • Team decision • Inform patient • Decision documentation	• List patient • Waitlist maintenance • Donor offers • Transplant • Follow-up visits
Tools	• EHR (records, patient portal) • Administrative Database • Third-party management systems • Phone, email, fax • Standard screening form	• EHR (records, patient portal) • Phone	• EHR (records, patient portal) • Third-party program • Phone • Letter	• EHR (records, patient portal) • Phone
Internal environment	• Patient spacea • Community offices • Transplant center	• Patient spacea • Transplant center • Laboratories • Imaging centers • Procedure centers	• Patient spacea • Transplant center	• Patient spacea • Transplant center • Laboratories • Imaging centers
Adaptationb	• Review not screened • Review screened as ineligible for evaluation • Review eligible for evaluation but did not start evaluation • Patient feedback	• Review did not complete evaluation • Review completed evaluation but not discussed at committee • Patient feedback	• Review declined • Review deferred • Review reasons for declined and deferred • Patient feedback	• Review waitlist outcomes • Review posttransplant outcomes • Patient feedback

^aPatient space: where the patient lives, works, spends their time. Important for social determinants of health and where they may be when receiving calls or messages from the transplant center.

^bAdaptation: counts and time intervals for overall and disaggregated (eg, race, sex, sexual orientation, gender identity)

EHR, electronic health record.

Referral Sources and Outreach

Of the 8 transplant centers, 63% conduct regular educational outreach in the community setting. Most centers choose their outreach locations based on historical referral density (63%) and/or requests from referring providers (63%). Additional factors influencing the choice of outreach locations included community resources, health system-owned community facilities, and cooperation with community-based groups. Most centers reported tracking referral sources by recording referral providers (100%) and practices (75%). Although referrers were predominantly documented in the electronic health record (75%), some centers use a third-party management system or an administrative database to track these data.

Referral Intake Variability

The information required at time of referral varied significantly across the centers and by organ type (Table 3). Most centers have referral/intake specialists to receive referral documentation, whereas some centers rely on transplant assistants or nurse coordinators (Table 4). Most data required at referral was standard across centers, but some centers required additional information, such as social security number, family history, history of blood transfusion, and contact information. Most centers require insurance information at referral for all organs, but information on race, ethnicity, and language spoken was only collected at 1–2 of the transplant centers. Access to transportation was collected at 1 center.

TABLE 3.

Type of information required by transplant centers surveyed (total per organ = 8) at time of referral for liver, kidney, pancreas, and living donors

Information	Liver	Kidney	Pancreas	Living donors
Date of birth	8	8	8	7
Address	6	6	6	7
Insurance	6	7	7	3
Primary disease	7	7	6	2
BMI	2	6	5	7
Referring physician	6	7	7	0
Comorbidities	2	4	5	8
Race	1	6	6	5
Ethnicity	1	6	6	5
Primary language	2	6	5	5
Medication list	1	3	3	6
Other	3	2	1	4
Caregiver	1	1	1	1
Transportation	1	1	1	0

TABLE 4.

Transplant team members responsible at each step across liver, kidney, pancreas, and living donor processes (total per organ = 8)

			Nurse coordinator	Referral/Intake specialist	Other administrator	Leadership	Transplant assistant	Other nurse	Medical physician	Surgeon	Social worker	Dietician	Transplant pharmacist	Financial coordinator	Pretransplant coordinator	Posttransplant coordinator	Cardiology	Psych	Living donor coordinator	Independent donor advocate	Other	N/A
Referral	Who is responsible for receiving the referral documentation?	Liver	2	4			2
		Kidney		6			2
		Pancreas		7			1
		Living Donors	2	3	1		1														1
	If insufficient information is received at referral, who is responsible for obtaining the missing information?	Liver	4	4			1														2
		Kidney	1	6			2	1
		Pancreas		7			1
		Living Donors	5	2	1		1
Screening	Who is responsible for determining whether a referred patient is eligible for in-person evaluation?	Liver	4	2					2
		Kidney	3	3				1		1											1
		Pancreas	4	3				1
		Living Donors	5					1	2	1										1
	If the person responsible for determining whether a patient is eligible for in-person evaluation is unavailable to make that determination, who is responsible for secondary decision-making?	Liver	3			1			2	2											1
		Kidney	4						2													2
		Pancreas	5			1			2
		Living Donors				2			4	1												1
	Who is responsible for determining medical eligibility before performing an in-person evaluation?	Liver							6	1			1		4
		Kidney		1	1			3	3	3	2	1	1	1	4							1
		Pancreas		1	1			2	4	2	1				4							1
		Living Donors							4	3					2				3
	Who is authorized to determine psychosocial eligibility before performing an in-person evaluation?	Liver							3	1	4				1							1
		Kidney						2	2	2	5				1							1
		Pancreas						1	4	4	5				1							1
		Living Donors							2	1	6				1			2	2
Evaluation	Which patient visits are required during an in-person evaluation?	Liver							6	7	5	4	1	4	5		3	2			1
		Kidney							6	5	3	2		1	5
		Pancreas							6	8	4	2		3	5			1
		Living Donors							6	6	6	3	2		4			2	2	2
	Which clinicians can suspend the evaluation process before selection committee discussion?	Liver							6	4	1
		Kidney							6	7				1							1
		Pancreas							5	6	5	2	2	2	5		1				1
		Living Donors							5	4											2
	Who decides when an evaluated patient is ready for selection committee presentation and discussion?	Liver													8
		Kidney													8
		Pancreas				1									7
		Living Donors				1									7
Committee	Which of the following are required representatives at selection committee discussion?	Liver			1				8	8	8	6	5	5	7		1	3			2
		Kidney							8	8	8	6	6	7	8		1	1
		Pancreas			1				8	8	8	7	6	6	8		1	1
		Living Donors							7	8	8	7	6	3	5		1	1	3	6	1
	Which of the following are required to present their assessment/opinion at selection committee?	Liver							8	8	8	5	3	4	6		1	3			2
		Kidney							7	6	6	2	3	3	7
		Pancreas							7	7	7	6	5	5	7
		Living Donors							8	8	8	5	3	2	4		1	2	2	4
	Who is authorized to determine psychosocial eligibility after in-person evaluation has been completed?	Liver							3	2	5	1	1	2	1			7			2
		Kidney							2	2	7							3			1
		Pancreas							2	2	7							1			1
		Living Donors							2	1	8	1	1					6	1	3	1
	Which selection committee member(s) communicate decisions about patient eligibility to patients?	Liver							3	1	1				8
		Kidney							1	1	1				8
		Pancreas							2	2	2				8
		Living Donors							2	1	1				4				4
	Which selection committee member(s) communicate decisions about patient eligibility to referring providers?	Liver							6	3	1				3
		Kidney						1	4	3	1				6						1
		Pancreas							4	4	1				7
		Living Donors							1						1							7

Missing Information at Referral

Transplant centers used different processes to address missing information at the time of referral. This included the number of attempts made to obtain the information (eg, at least 3 attempts), methods used for the attempts (eg, letter, call), and the time allowed to receive missing information, which varied (time cutoff versus no cutoff). Most centers reported that a referral/intake specialist is responsible for obtaining missing information, whereas 2 centers relied on nurse coordinators, particularly for live donors (Table 4).

Variation in Transplant Staff Roles and Responsibilities

There was a wide range of responsibilities and professional titles of supporting staff across centers. Referral specialist, transplant assistant, transplant care facilitators, and patient service/care coordinators were all considered similar titles for the staff members responsible for receiving patient referrals, processing them for evaluation, and assisting with scheduling appointments and sometimes screening against exclusion criteria. In some centers, medical assistants acted as the referral/intake specialists. In general, the referral intake roles were not staffed by nurses, but at some centers, the responsibilities of the referral/intake reviewer and pretransplant coordinator were combined and termed a nurse navigator.

Variation in Screening

Some centers, particularly for kidney transplantation, reported minimal screening because all referred patients were evaluated unless their body mass index (BMI) was >40 kg/m². Only 2 centers used a standard screening form across all 3 organs. The decision makers for screening patients eligible for evaluation at most centers were coordinators, with some centers having a physician (in medicine) or surgeon performing this task (Table 4). Some center protocols were more specific than others, and this could vary between organs within the same center. For example, for a center with a specific protocol, the first attempt to contact is made within 5 business days of referral, and the second attempt is made within 2–3 wk of referral. If contact is not made, a letter is sent no later than 1 mo from the referral. Although other centers make 3 calls during 1–3 wk before closing the referral and if no response is received, they send a letter to the patient and referring physician. Regarding hepatocellular carcinoma, whereas some centers required initial review by a multidisciplinary liver cancer team, others only referred to transplantation at the hepatologist’s discretion. If there are surgical concerns, some centers require a surgeon to review the case before conducting a clinic visit for screening, whereas other centers have these cases informally reviewed by surgeons or at the committee meeting. For living donors, more screening is performed initially via phone and the patient portal, with a wide variation in the number of potential donor contacts attempted, the methods used for contacting them (eg, phone, email, letters), and time allotted for screening.

Step 2: Evaluation

For this study, the evaluation step in the transplant process was defined to begin when a patient starts evaluation workup and ends when a patient is deemed ready for committee meeting presentation (Figure 2). This step is more clearly delineated by defined protocols, and most of the work is being done within the transplant center internal environment. Multiple people were involved in coordination between the transplant center and external health organizations for evaluation results (eg, laboratories, imaging; Table 2).

Evaluation Logistics

In preparation for evaluation clinic, a few centers reported having preevaluation virtual visits to streamline subsequent evaluation steps. Some centers prepared a summary document of patient information and sent this to the evaluation providers ahead of their clinic visit. In evaluation clinic, most centers (>50%) have patients seen by a medical doctor (eg, hepatologist) if not already followed internally, as well as by a surgeon, social worker, coordinator, and dietician. Before committee meeting, most centers allow the medical or surgical physician to suspend the evaluation for kidney and liver; for pancreas, most centers additionally allow social workers or coordinators to suspend evaluations. At every center, the coordinator decides when a patient is ready for committee presentation (Table 4).

Evaluation Requirements

Most centers reported similar requirements for the evaluation step. However, there was some discrepancy in cardiac testing requirements. Some centers only required stress testing in the case of advanced age, diabetes diagnosis, or smoking history. Regarding an age threshold, 2 centers had a threshold for liver and kidney, whereas 5 centers had a threshold for pancreas. For kidney transplant evaluation, 1 center had special “tracks” for workup required on the basis of dialysis status. Vaccine requirements for patients varied across centers, particularly for the COVID-19 vaccine. All centers had a BMI threshold for pancreas transplant (BMI range, 30–40 kg/m²), 7 centers for kidney transplant (BMI range, 40–45 kg/m²), and 2 centers for liver transplant (BMI 40 kg/m²).

Step 3: Multidisciplinary Selection Committee Meeting

The committee meeting step starts when a patient is deemed to have sufficient evaluation data for committee discussion and ends when the patient is declined or listed with Organ Procurement and Transplantation Network/United Network for Organ Sharing (Figure 2). This step involves many people, but most tasks are conducted within the transplant center environment (Table 2).

Procedures During Committee Meeting

Some centers send out a pre-committee meeting document to the entire transplant team in preparation for the group discussion. Although specific transplant team members are required to be present at committee meetings, centers varied in who was required to present their assessment (Table 4). Most centers required the medical physician (87.5%), surgeon (75%), social worker (75%), and coordinator (75%) to present their assessment for all organs. However, a minority of centers across all organs required the dietician (25%), pharmacist (37.5%), and financial coordinator (37.5%) to present their assessment. No centers require presentation by other team members, such as cardiologist, psychiatrist/psychologist, or independent donor advocate.

Determining Patient Eligibility for Listing

The most common mechanism for determining eligibility was achieving an informal committee consensus (liver: 50% of centers, kidney: 37.5%, pancreas: 62.5%). The second most common approach was a formal committee vote (liver: 25% of centers, kidney: 37.5%, pancreas: 25%). The least common method was a decision by a medical/surgical director (kidney: 12.5%, pancreas: 12.5%). Although most centers used a standard form, checklist, or documentation for determining eligibility for addition to the waitlist, the approach varied across organs (liver: 50%, kidney: 62.5%, pancreas: 62.5%).

Communicating the Decision From Committee Meeting to Patients

All centers communicated the committee decision to the patient via phone call, and most centers also used the patient portal or sent a letter via postal mail. All centers, across all organs and living donors, had coordinators communicate the decision to the patient with the medical physician, surgeon, and social worker, sometimes assisting (Table 4). The protocols for contacting the patient to inform them of the decision were variable and included, on average, between 1 and 3 attempts by phone (some centers “as long as it takes”).

Post Committee Decisions Communication and Appeals

The option and process for patients appealing the committee’s decision were not standardized across centers. Only 25% of centers had a formal appeal process for patients deemed ineligible (liver only), whereas most centers had an informal appeal process (liver: 50%, kidney: 87.5%, pancreas: 87.5%) or none (liver: 25%, kidney: 12.5%, pancreas: 12.5%). Although most centers across all organs and living donors allowed declined patients to be re-referred at any time (liver: 75%, kidney: 87.5%, pancreas: 62.5%, living donors: 75%), 3 centers did not permit re-referral of either pancreas or living donors. Some centers required a 6-mo waiting period (25%) or only after an appeal from the referring provider (liver: 25%).

Step 4: Waitlist and Onward

The waitlist step starts when the patient is listed with the Organ Procurement and Transplantation Network/United Network for Organ Sharing, and includes waitlist management, perioperative care, and posttransplant care (Figure 2). The process and components of the SEIPS work system (eg, patient, coordinator) involved subsequent to waitlisting ebb and flow, as time on the waitlist and posttransplant can last for an indeterminate amount of time and involves the entire transplant team and ancillary medical providers (Table 2). Additionally, as patients generally become sicker while waiting for transplant, waitlist maintenance and intermittent management (eg, hospitalizations) can require attention from the transplant team.

Waitlist Period

Although most transplant centers have clinic appointments with waitlisted kidney or pancreas patients either every other year (kidney: 50%, pancreas: 37.5%) or annually (kidney: 50%, pancreas: 62.5%), patients listed for liver transplant were seen at most transplant centers annually (62.5%) with the remainder more frequently (semiannual or monthly). For all centers, the most common follow-up testing was cardiac related, appropriate cancer screening, and imaging. However, the intervals for cardiac testing and abdominal imaging were highly variable, ranging from as needed per medical assessment, 6 mo, annually, and every 2–5 y. Some other variably required testing included pulmonary function tests and alcohol abstinence screening.

Posttransplant

Posttransplant follow-up regarding who sees the patient (eg, surgeon versus hepatologist) and how often varied across transplant centers and organs. Advanced Practice Providers are routinely used for posttransplant care provision across all organs. Regarding the surgery to medicine transition, 50% of transplant centers require transplant recipients to see surgeons 1–2 times postdischarge, with nephrologists/hepatologists taking over care early posttransplant. Another protocol seen at some centers is that the patient is only seen by surgery on an as-needed basis postdischarge. Some transplant center protocols required patients to follow up with the surgeon at least weekly for the first 2–3 mo and then transition to nephrologist/hepatologist. For social worker follow-up posttransplant, 50% of centers reported that social work was needed or not at all.

Adaptation: Data Review

With regard to the Adaptation part of the SEIPS model, transplant centers did not have standardized methods for reviewing data throughout the process and outcomes to feed back into their transplant system (Figure 1; Table 2). Regarding quality review of data at the referral/screening step, 75% of centers across all organs do not review characteristics or trends about patients deemed ineligible to proceed onward in the transplant process. Most centers did not review data on patients from evaluation who were not presented at the committee meeting (liver: 87.5%, kidney: 75%, pancreas: 62.5%). For committee meetings, the majority of centers do not specifically review data on patients deemed ineligible for transplant after committee meetings (liver: 87.5%, kidney: 75%, pancreas: 50%). Conversely, 75% of centers across all organs reviewed data on waitlist outcomes (eg, time to transplant, waitlist removal) quarterly, and the remaining centers did this monthly.

DISCUSSION

In this survey of 3 organ programs (liver, kidney, and pancreas) at 8 abdominal transplant centers, we created robust process maps to describe the transplant evaluation and selection process from the time of referral through posttransplant follow-up. We used the SEIPS model to identify variation across the people, tasks, tools, environment, and process.¹² Transplant center approaches to outreach and education demonstrate a broad lack of standardization and knowledge sharing for the referrer-to-transplant center pipeline. Centers also varied in their procedures for screening referrals, determining eligibility, waitlist maintenance, and posttransplant follow-up, and clearly defined protocols were not widely used. Our findings can inform multilevel efforts to optimize transplant care. At the patient level, the process maps increase transparency in the pathway of access to transplant, which has been called for by professional committees and national advocacy groups. At the health system level, our assessment can inform efficient transplant staffing models and elucidate opportunities for digital technologies and automation to reduce clinician workload. At the national level, these findings provide a framework for establishment of best practices in the evaluation and selection process and can inform efforts to increase reimbursement for transplant center costs related to the evaluation and selection of patients for the waitlist.

A major concern regarding access to transplantation, particularly equitable access, lies at the referral step.^15,16 Given the rise in chronic organ disease, it is likely that the burden of transplant centers to manage referral volumes will grow exponentially in the next few years. We found that screening was variable across centers in terms of method, timing, and authority to determine eligibility. Variability in the people and processes at this critical step, when all initial data are collected and interpreted, may be the start of a cascade that begins with the proverbial front door of the transplant center. Nonstandardized data entry at referral can lead to poor data quality and missed opportunities for transplantation.

Given the complexity of transplantation, a surprising finding was the paucity of supportive tools (eg, software, clinical decision support tools) used by transplant centers to improve work efficiency. The use of artificial intelligence-assisted technology and workflow optimization may change tools used in transplant.¹⁷ The liver transplant guidelines for evaluation were published a decade ago, and substantial work has been done in transplantation related to the sociotechnical transplant system since that time.⁹ Volk et al¹ used qualitative techniques to provide insights from 4 transplant centers about the committee meeting step. Building upon this, our study is the first to our knowledge to provide an extensive assessment of the transplant process across the entire continuum with this number of centers.^11,18 It is well documented that process, structure, form, and output are all intricately linked.¹² Transplant professional societies could convene a multidisciplinary group of stakeholders to establish best practice guidelines on supportive tools for referring provider education, community outreach, initial referral assessment, formal evaluation procedures, selection committee processes, and waitlist management.

The people component of the SEIPS model highlights variability in representation and definitions across transplant centers, which has been identified as a weakness in the field of transplantation.^19,20 For example, the range of racial, ethnic, and gender diversity on the transplant team was 13%–70% for women, 0%–58% for Black faculty/staff, and 0%–60% for Hispanic faculty/staff. The literature, both within and outside of transplantation, highlights the importance of culturally and linguistically concordant care.^21,22 Although reliant on workforce composition, increased cultural and linguistic concordance has been associated with decreased health system utilization and costs.²³ Importantly, transplant centers should consider how their transplant team matches with the population of the surrounding communities and referral catchment areas. A longstanding example of such a targeted initiative is Northwestern Medicine’s Hispanic Kidney Transplant Program and the African American Transplant Access Program.^24,25 Finally, regarding the people on the transplant team, the definitions of nurses, coordinators, and referral/intake specialists were nonstandardized across centers. Due to future directions in the field to improve national procedures and data quality prelisting,²⁴ clear definitions should enable improved standardization of training and tasks. A good example of this is demonstrated by the evolution of the definition of the transplant pharmacist, which has improved the standardization of pharmacotherapy in transplantation.²⁶

The implications of this study also highlight potential drivers of transplant disparities. Social determinants of health (SDOH) encompass groups of factors that adversely and differentially affect care.²¹ SDOH are deeply entangled in patient data and are known to drive disparities (eg, race, sex, sexual orientation) across the transplant continuum.^11,13,27-29 Differential variability in healthcare processes and data collection can exacerbate these health disparities.³⁰ When processes are not standardized and transparent, they can be more difficult to navigate, particularly for patients with lower health literacy or fewer socioeconomic resources. For example, after patients are declined for listing, most centers had an informal appeals process or lacked one altogether. A lack of a standardized process for patients and referring providers to appeal a transplant center’s decision can lead to variation in documentation and rates of re-referral. The patient’s ability to successfully navigate an informal process may depend heavily on factors such as their access to supportive networks, understanding of the system, or ability to advocate for themselves, which can be influenced by SDOH and contribute to disparities. Prior literature related to re-referral is lacking, but materials exist for educating patients and referring providers.³¹ Given this variability in processes, a national effort through the American Society of Transplantation to standardize decline letters could benefit patients in the evaluation process.

Our study has some limitations. We described 8 liver, kidney, and pancreas transplant centers active in the CHART consortium at the time of data collection, which represents a fraction of the >250 transplant centers in the country. These 8 centers were also large, academic centers, which may not be representative of all centers. However, we report transplant processes in-depth, and our rigorous, SEIPS-guided analysis sheds important light on where consistency and variation most commonly arise. Such information is pivotal for improving data quality process consistency in transplantation care delivery and ultimately, patient outcomes. Future research should involve studying the impact of center volumes (eg, average number of patients on the waitlist) and processes on outcomes, such as the percentage of patients listed. Through the trust built between member institutions of CHART and mixed methods studies, we can deeply understand the impact of processes across transplant care and develop best practices for the larger transplant community. Although CHART is limited to abdominal organs at the time of this study, the findings may be translatable, and future research may expand to other organs. Our survey intentionally focused on access and prelisting processes because little is known about such processes. Furthermore, some SDOH were not included in the survey. For example, we did not ask about lesbian, gay, bisexual, or transgender representation on the transplant team, which can be important in the patient-provider relationship and health outcomes. Finally, we encountered some difficulty in reporting consistent, self-identified race and ethnicity among transplant team members, possibly due to concerns about reidentification due to small numbers. Further work is needed to understand the impact of types of process variation on disparities, time to care, and clinical outcomes.

CONCLUSIONS

We surveyed 8 transplant centers and described variations and similarities across the continuum of care, from referral to posttransplant, for patients receiving liver, kidney, and pancreas transplants. As transplantation is a complex system with associated intricate processes, we have demonstrated that HFE, specifically the SEIPS model, can aid in understanding the process. As the field of transplantation continues to strive toward improved data collection and standardized processes, particularly prelisting, our findings can inform metrics and best practices that will improve the lives of the patients.