OPTN/SRTR 2022 Annual Data Report: Deceased Organ Donation.

The Scientific Registry of Transplant Recipients uses data collected by the Organ Procurement and Transplantation Network to calculate metrics such as organs recovered per donor, organs transplanted per donor, and organs recovered for transplant but not transplanted (ie, nonuse). In 2022, there were 14,905 deceased donors, a 7.5% increase from 13,863 in 2021, and this number has been increasing since 2010. The number of deceased donor organs used for transplant increased to 37,334 in 2022, a 4.6% increase from 35,687 in 2021; this number has been increasing since 2012. The increase may be due in part to the rising number of deaths of young people amid the ongoing opioid epidemic. The number of organs transplanted included 10,130 left kidneys, 10,039 right kidneys, 298 en bloc kidneys, 922 pancreata, 8,847 livers, 83 intestines, 4,169 hearts, and 2,633 lungs. Compared with 2021, transplants of all organs except pancreata and intestines increased in 2022. In 2022, 3,563 left kidneys, 3,673 right kidneys, 156 en bloc kidneys, 366 pancreata, 965 livers, 4 intestines, 54 hearts, and 219 lungs were not used. These data suggest an opportunity to increase the number of transplants by reducing the number of unused organs. Despite the COVID-19 pandemic, there was no dramatic increase in the number of unused organs and there was an increase in the total numbers of donors and transplants.

"You don't know what you don't know": A qualitative study of informational needs of patients, family members, and living donors to inform transplant system metrics.

INTRODUCTION: Informational needs and potential use of transplant metrics, especially among patients, remain understudied and a critical component of the transplant community's commitment to patient-centered care. We sought to understand the perspectives and needs of patients, family members/caregivers, living donors, and deceased donor family members. METHODS: We examined decision-making experiences and perspectives on the needs of these stakeholder groups for data about the national transplant system among 58 participants of 14 focus groups and 6 interviews. RESULTS: Three major themes emerged: 1) informational priorities and unmet needs (transplantation system processes, long-term outcomes data, prelisting data, patient-centered outcomes, and ability to compare centers and regions); 2) challenges obtaining relevant and trustworthy information (patient burden and effort, challenges with medical jargon, and difficulty finding trustworthy information); and 3) burden of facing the unknown (stress and anxiety leading to difficulty processing information, challenges facing the transplant journey when you "don't know what you don't know"). CONCLUSION: Patient, family member, and living donor participation in shared decision-making has been limited by inadequate access to patient-centered information. New metrics and patient-facing data presentations should address these content gaps using best practices to improve understanding and support shared decision-making.

OPTN/SRTR 2021 Annual Data Report: Deceased Organ Donation.

The Scientific Registry of Transplant Recipients uses data collected by the Organ Procurement and Transplantation Network to calculate metrics such as donation rate, organ yield, and rate of organs recovered for transplant but not transplanted (ie, nonuse). In 2021, there were 13,862 deceased donors, a 10.1% increase from 12,588 in 2020, and an increase from 11,870 in 2019; this number has been increasing since 2010. The number of deceased donor transplants increased to 41,346 transplants in 2021, a 5.9% increase from 39,028 in 2020; this number has been increasing since 2012. The increase may be due in part to the rising number of deaths of young people amid the ongoing opioid epidemic. The number of organs transplanted included 9,702 left kidneys, 9,509 right kidneys, 551 en bloc kidneys, 964 pancreata, 8,595 livers, 96 intestines, 3,861 hearts, and 2,443 lungs. Compared with 2019, transplants of all organs except lungs increased in 2021, which is remarkable as this occurred despite the COVID-19 pandemic. In 2021, 2,951 left kidneys, 3,149 right kidneys, 184 en bloc kidneys, 343 pancreata, 945 liver, 1 intestine, 39 hearts, and 188 lungs were not used. These numbers suggest an opportunity to increase numbers of transplants by reducing nonused organs. Despite the pandemic, there was no dramatic increase in number of nonused organs and there was an increase in total numbers of donors and transplants. The new Centers for Medicare & Medicaid Services metrics for donation rate and transplant rate have also been described and vary across organ procurement organizations; the donation rate metric varied from 5.82 to 19.14 and the transplant rate metric varied from 18.7 to 60.0.

Time to discard the term "discard".

The 2022 Scientific Registry of Transplant Recipients Consensus Conference "People Driven Transplant Metrics" offered an opportunity for a diverse group of stakeholders in the solid organ transplant community to exchange ideas about what information and metrics are important to different stakeholders. Participating patients and family members called on the transplant community to cease using the term "discards" to refer to donated organs that are not transplanted.

Stakeholders' perspectives on transplant metrics: the 2022 Scientific Registry of Transplant Recipients' consensus conference.

In July 2022, the Scientific Registry of Transplant Recipients (SRTR) hosted an innovative, multistakeholder consensus conference to identify information and metrics desired by stakeholders in the transplantation system, including patients, living donors, caregivers, deceased donor family members, transplant professionals, organ procurement organization professionals, payers, and regulators. Crucially, patients, caregivers, living donors, and deceased donor family members were included in all aspects of this conference, including serving on the planning committee, participating in preconference focus groups and learning sessions, speaking at the conference, moderating conference sessions and breakout groups, and shaping the conclusions. Patients constituted 24% of the meeting participants. In this report, we document the proceedings and enumerate 160 recommendations, 10 of which have been highly prioritized. SRTR will use the recommendations to develop new presentations of information and metrics requested by stakeholders to support informed decision-making.

Toward continuous improvement of Scientific Registry of Transplant Recipients performance reporting: Advances following 2012 consensus conference and future consensus building for 2022 consensus conference.

The Scientific Registry of Transplant Recipients (SRTR) held a consensus conference in 2012 that examined methods used by SRTR for constructing performance metrics and made recommendations on how to improve program-specific reports. That consensus conference provided 25 recommendations categorized as follows: statistical methods, risk adjustment, and outcomes and data. During the subsequent decade, SRTR has implemented most of these recommendations; these are described in this article along with plans for another consensus conference in 2022. With the present article, SRTR aims to create transparency in the field of transplant metrics and guide discussion in the planning of the next consensus conference in 2022. The new conference will revisit the previous topics and have a broader focus to improve the metrics and information that SRTR provides. Readers can provide feedback on topics to be discussed at the next consensus conference as early as possible, by emailing srtr@srtr.org with the subject line "Task 5 Public Comment."

Designing a patient-specific search of transplant program performance and outcomes: Feedback from heart transplant candidates and recipients.

BACKGROUND: The Scientific Registry of Transplant Recipients provides transplant program-specific information, but it is unclear what patients and stakeholders need to know. Acceptance criteria for the candidate waitlist and donor organs vary by program and region, but there is no means to search for programs by the clinical profiles of recipients and donors. METHODS: We examined variability in program-specific characteristics that could influence access to transplantation. We also conducted three interviews and three focus groups with heart transplant candidates and recipients. Participants evaluated prototypes of a patient-specific search tool and its capacity to identify programs tailored to specific patient needs. Patient experiences and feedback influenced the development of tools. RESULTS: The distribution of recipient and donor characteristics influenced access to transplantation, as age and body mass index varied across programs (all with p < .01). Several themes emerged related to decision-making and the perceived usability of the patient-specific search. Perceptions of the prototypes varied, but were positive overall and support making the patient-specific search publicly available. Participants revealed barriers to evaluating transplant programs and suggest that patient-specific search results may optimize the process. CONCLUSIONS: The patient-specific tool (http://transplantcentersearch.org/) is valued by heart transplant patients and is important to maximizing access to transplant.

Tool to Aid Patients in Selecting a Liver Transplant Center.

Variations in candidate and donor acceptance criteria may influence access and mortality for liver transplantation. We sought to understand how recipient and donor characteristics vary across centers and how patients interpret this information, and we used these data to develop a tool to provide tailored information to candidates seeking a center (www.transplantcentersearch.org). We analyzed liver recipient data from the Scientific Registry of Transplant Recipients to determine how recipient and donor characteristics (eg, age, Medicaid use, and human immunodeficiency virus status) varied across programs. Data included recipients and donors at each US program between January 1, 2015, and December 31, 2017. The variation in characteristics was plotted with centers stratified by total transplant volume and by volume of each characteristic. A subset of characteristics was plotted to show variation over 3 years. We created mockups of potential reports displaying recipient characteristics alongside pretransplant and posttransplant outcomes and solicited feedback at patient and family interviews and focus groups, which included 39 individuals: 10 pilot interviews with candidates seeking liver transplant at the University of Minnesota-Fairview (UMNF) and 5 focus groups with 13 UMNF candidates, 6 UMNF family members, and 10 national recipients. Transcripts were analyzed using a thematic analysis. Several themes emerged: (1) Candidates experience gaps in existing education about center options; (2) patients requested information about how selection criteria might impact access to transplant; and (3) information tailored to a candidate's medical characteristics can inform decisions. Characteristics shown on mockups varied across centers (P < 0.01). Variation was widespread for small and large centers. In conclusion, variation exists in recipient and donor characteristics across centers. Liver transplant patients provide positive feedback upon viewing patient-specific search tools.

Association of pretransplant and posttransplant program ratings with candidate mortality after listing.

The Scientific Registry of Transplant Recipients (SRTR) is responsible for understandable reporting of program metrics, including transplant rate, waitlist mortality, and posttransplant outcomes. SRTR developed five-tier systems for each metric to improve accessibility for the public. We investigated the associations of the five-tier assignments at listing with all-cause candidate mortality after listing, for candidates listed July 12, 2011-June 16, 2014. Transplant rate evaluations with one additional tier were associated with lower mortality after listing in kidney (hazard ratio [HR], 0.93 0.950.97 ), liver (HR, 0.87 0.900.92 ), and heart (HR, 0.92 0.961.00 ) transplantation. For lung transplant patients, mortality after listing was highest at programs with above- and below-average transplant rates and lowest at programs with average transplant rates, suggesting that aggressive acceptance behavior may not always provide a survival benefit. Waitlist mortality evaluations with one additional tier were associated with lower mortality after listing in kidney (HR, 0.94 0.960.99 ) transplantation, and posttransplant graft survival evaluations with one additional tier were associated with lower mortality after listing in lung (HR, 0.90 0.940.98 ) transplantation. Transplant rate typically had the strongest association with mortality after listing, but the strength of associations differed by organ.

Comparing Scientific Registry of Transplant Recipients posttransplant program-specific outcome ratings at listing with subsequent recipient outcomes after transplant.

To improve accessibility of program-specific reports to patients, the Scientific Registry of Transplant Recipients released a 5-tier system for categorizing 1-year posttransplant program evaluations. Whether this system predicts subsequent posttransplant outcomes at the time patients are waitlisted has been questioned. We investigated the association of tier at listing and the corresponding continuous score used for tier assignment, which ranges from 0 (poor outcomes) to 1 (good outcomes), with eventual 1-year posttransplant graft survival for candidates listed between July 12, 2011, and June 16, 2014, who underwent transplant before December 31, 2016. One additional tier at listing was associated with better 1-year posttransplant outcomes in liver (hazard ratio [HR], 0.93; 95% confidence interval [CI], 0.89-0.97) and lung transplant (HR, 0.90; 95% CI, 0.84-0.97) but not kidney (HR, 0.96; 95% CI, 0.92-1.01) or heart transplant (HR, 1.02; 95% CI, 0.93-1.10). In liver and lung transplant, longer time between listing and transplant was associated with stronger protective effects for high-tier programs. In kidney, liver, and lung transplant, posttransplant evaluations at listing had nonlinear associations with eventual posttransplant outcomes: relatively flat for 5-tier scores <0.5 and decreasing for scores >0.5. After adjustment for measured recipient and donor risk factors, posttransplant evaluations at listing predicted differences in eventual outcomes in liver and lung transplant, providing useful information to patients.

Seeking new answers to old questions about public reporting of transplant program performance in the United States.

The Scientific Registry of Transplant Recipients (SRTR) is mandated by the National Organ Transplant Act, the Final Rule, and the SRTR contract with the Health Resources and Services Administration to report program-specific information on the performance of transplant programs. Following a consensus conference in 2012, SRTR developed a new version of the public website to improve public reporting of often complex metrics, including changing from a 3-tier to a 5-tier summary metric for first-year posttransplant survival. After its release in December 2016, the new presentation was moved to a "beta" website to allow collection of additional feedback. SRTR made further improvements and released a new beta website in May 2018. In response to feedback, SRTR added 5-tier summaries for standardized waitlist mortality and deceased donor transplant rate ratios, along with an indicator of which metric most affects survival after listing. Presentation of results was made more understandable with input from patients and families from surveys and focus groups. Room for improvement remains, including continuing to make the data more useful to patients, deciding what additional data elements should be collected to improve risk adjustment, and developing new metrics that better reflect outcomes most relevant to patients.

How patients choose kidney transplant centers: A qualitative study of patient experiences.

Little is known about how patients make the critical decision of choosing a transplant center. In the United States, acceptance criteria, waiting times, and mortality vary significantly by geography and center. We sought to understand patients' experiences and perspectives when selecting transplant centers. We included 82 kidney transplant patients in 20 semi-structured interviews, nine focus groups with local candidates, and three focus groups with national recipients. Sites included two local transplant centers in Minneapolis, Minnesota, and national recipients from across the United States. Transcripts were analyzed by two researchers using a thematic analysis. Several themes emerged related to priorities and barriers when choosing a center. Patients were often unfamiliar with options, even with multiple local centers. Patients described being referred to a specific center by a trusted provider. Patients prioritized perceived reputation, comfort, and convenience. Insurance coverage was both a source of information and a barrier to options. Patients underestimated differences across centers and the effects on being waitlisted and receiving a transplant. Barriers in decision making included an overwhelming scope of information and difficulty locating information relevant to patients with unique medical needs. Informed decisions could be improved by the dissemination of understandable information better tailored to individual patient needs.

A kidney offer acceptance decision tool to inform the decision to accept an offer or wait for a better kidney.

We developed a kidney offer acceptance decision tool to predict the probability of graft survival and patient survival for first-time kidney-alone candidates after an offer is accepted or declined, and we characterized the effect of restricting the donor pool with a maximum acceptable kidney donor profile index (KDPI). For accepted offers, Cox proportional hazards models estimated these probabilities using transplanted kidneys. For declined offers, these probabilities were estimated by considering the experience of similar candidates who declined offers and the probability that declining would lead to these outcomes. We randomly selected 5000 declined offers and estimated these probabilities 3 years post-offer had the offers been accepted or declined. Predicted outcomes for declined offers were well calibrated (<3% error) with good predictive accuracy (area under the curve: graft survival, 0.69; patient survival, 0.69). Had the offers been accepted, the probabilities of graft survival and patient survival were typically higher. However, these advantages attenuated or disappeared with higher KDPI, candidate priority, and local donor supply. Donor pool restrictions were associated with worse 3-year outcomes, especially for candidates with high allocation priority. The kidney offer acceptance decision tool could inform offer acceptance by characterizing the potential risk-benefit trade-off associated with accepting or declining an offer.

The importance of transplant program measures: Surveys of three national patient advocacy groups.

The Scientific Registry of Transplant Recipients (SRTR) provides federally mandated program-specific transplant data to the public. Currently, there is little understanding of how different program measures are prioritized by patients in selecting a program for transplantation. This study recruited 479 transplant advocacy group members from mailing lists and social media of the National Kidney Foundation (NKF), transplant families (TF), and Transplant Recipient International Organization (TRIO). Survey participants identified how many different programs would be reasonable to consider and viewed four measures that have recently been displayed on SRTR public search result websites and six measures not recently displayed and indicated importance on a 5-point scale. Four hundred two completed the survey (TF = 26; TRIO = 34; NKF = 342). Seventy-eight percent indicated that considering more than one program would be reasonable. Linear mixed models adjusted for organization, education, and gender. Likert scores for pretransplant (transplant rate) and transplant volume measures were similar and were very or extremely important to over 80% of participants. Posttransplant (survival after transplant) was rated as 0.52 points higher, confidence interval (0.41, 0.64). Results indicate that many patient advocacy group members find a choice between two or more programs reasonable and value multiple measures when assessing programs where they may want to undergo transplantation.

What patients and members of their support networks ask about transplant program data.

Transplant patients often seek specific data and statistics to inform medical decision making; however, for many relevant measures, patient-friendly information is not available. Development of patient-centered resources should be informed by patient needs. This study used qualitative document research methods to review 678 detailed Scientific Registry of Transplant Recipients (SRTR) entries and summary counts of 55 362 United Network for Organ Sharing (UNOS) entries to provide a better understanding of what was asked and what requests were most common. Incoming call and email logs maintained by SRTR and UNOS were reviewed for 2010-2015. Patients sought a wide range of information about outcomes, waiting times, program volumes, and willingness to perform transplants in candidates with specific diseases or demographics. Patients and members of their support networks requested explanation of complex information, such as actual-vs-expected outcomes, and of general transplant processes, such as registering on the waiting list or becoming a living donor. They sought transplant program data from SRTR and UNOS, but encountered gaps in the information they wanted and occasionally struggled to interpret some data. These findings were used to identify potential gaps in providing program-specific data and to enhance the SRTR website (www.srtr.org) with more patient-friendly information.

Design of a patient-centered decision support tool when selecting an organ transplant center.

Patients in the US in need of a life-saving organ transplant must complete a long process of medical decisions, and a first step is to identify a transplant center to complete an evaluation. This study describes a patient-centered process of testing and refinement of a new website (www.transplantcentersearch.org) that was developed to provide data to patients who are seeking a transplant center. Mixed methods, including online surveys and structured usability testing, were conducted to inform changes in an iterative process. Survey data from 684 participants indicated the effects of different icon styles on user decisions. Qualitative feedback from 38 usability testing participants informed improvements to the website interface. The mixed methods approach was feasible and well suited to the need to address multiple development steps of a patient-facing tool. The combined methods allowed for large survey sample sizes and also allowed interaction with a functioning website and in-depth qualitative discussions. The approach is applicable for a broad range of target user groups who are faced with challenging decisions and a need for information tailored to individual users. The survey and usability testing concluded with a functioning website that is positively received by users and meets the objective to support patient decisions when seeking an organ transplant.

Designing a Liver Transplant Patient and Family Decision Support Tool for Organ Offer Decisions.

BACKGROUND: For liver transplant candidates on the waiting list, deciding to accept a donor organ with known or potential risk factors can be stressful and can lead to declined offers. Current education for patients and family often takes place during transplant evaluations and can be overwhelming and result in low retention and poor understanding of donor quality. METHODS: In the first phase, we sought to understand provider experiences when counseling patients about donor risks and donor offers. We conducted interviews and focus groups with liver transplant providers at 1 local center and at a national clinician conference. Twenty providers participated: 15 hepatologists and 5 surgeons. The provider feedback was used to create an initial outline of content that is consistent with decision support frameworks. In a second phase, graphic design collaborators created mockups of a patient-friendly tool. We reviewed mockups with 4 transplant coordinators and 9 liver transplant candidates for feedback on clarity and utility to prepare for an organ offer. Patient responses allowed a comparison of perceived readiness to receive an offer call before and after viewing mockups. RESULTS: We identified themes relating to the offer process, repetition and timing of education, and standardization and tailoring of content. The results indicated a gap in available education after the evaluation session, and information specific to offer decisions is needed. Patient feedback emphasized the need to review the offer process before a real offer. CONCLUSIONS: Patients and providers responded favorably to a patient tool addressing existing gaps in education while waiting for a donor offer. Additional patient, family, and provider feedback will guide the development of an interactive tool to prepare patients and families for an offer decision.

Development of a Patient-specific Search of Transplant Program Outcomes and Characteristics: Feedback From Kidney Transplant Patients.

BACKGROUND: Patients face obstacles in finding a transplant program that meets their healthcare needs. Acceptance criteria and waiting times vary by region and program. The Scientific Registry of Transplant Recipients provides program-specific information, but it is unclear what patients and referring physicians need to know. METHODS: We examined variability in program-specific characteristics that could influence access to transplantation. We also conducted 20 interviews and 16 focus groups with transplant candidates, recipients, and their family members. Participants were shown prototypes of a patient-specific search tool and evaluated its capacity to identify programs tailored to the needs of individual patients. RESULTS: The distribution of recipient and donor characteristics that may impact access to transplantation, such as recipients on Medicaid, varied across programs (all with P < 0.01). Several themes emerged related to impressions of access to transplantation and the usability of patient-specific search functions. Perceptions of the prototypes and results varied, but were positive overall and support providing an individualized search of program level data. Participants revealed significant barriers to identifying and evaluating transplant programs and suggest that patient-specific search results reduce the anxiety associated with selecting a program. CONCLUSIONS: Providing patient-specific tools is valued by patients and important to maximizing access to transplant.

Comparing Pretransplant and Posttransplant Outcomes When Choosing a Transplant Center: Focus Groups and a Randomized Survey.

BACKGROUND: In response to calls for an increased focus on pretransplant outcomes and other patient-centered metrics in public reports of center outcomes, a mixed methods study evaluated how the content and presentation style of new information influences decision-making. The mixed methods design utilized qualitative and quantitative phases where the strengths of one method help address limitations of the other, and multiple methods facilitate comparing results. METHODS: First, a series of organ-specific focus groups of kidney, liver, heart, and lung patients helped to develop and refine potential displays of center outcomes and understand patient perceptions. A subsequent randomized survey included adult internet users who viewed a single, randomly-selected variation of 6 potential online information displays. Multinomial regression evaluated the effects of graphical presentations of information on decision-making. RESULTS: One hundred twenty-seven candidates and recipients joined 23 focus groups. Survey responses were analyzed from 975 adults. Qualitative feedback identified patient perceptions of uncertainty in outcome metrics, in particular pretransplant metrics, and suggested a need for clear guidance to interpret the most important metric for organ-specific patient mortality. In the randomized survey, only respondents who viewed a note indicating that transplant rate had the largest impact on survival chose the hospital with the best transplant rate over the hospital with the best posttransplant outcomes (marginal relative risk and 95% confidence interval, 1.161.501.95). CONCLUSIONS: The presentation of public reports influenced decision-making behavior. The combination of qualitative and quantitative research helped to guide and enhance understanding of the impacts of proposed changes in reported metrics.