Deconstructing Silos of Knowledge Around Lung Transplantation to Support Patients: A Patient-Specific Search of Scientific Registry of Transplant Recipients Data

Introduction – Decision making amongst uncertainty

Guidelines for selecting lung transplant candidates continue to evolve.^1,2 Selection criteria for candidates vary across programs due to many factors, including changing evidence and differences in practice.³ This variation impacts both recipient outcomes and the experience of patients who are in need of a lung transplant.^4,5 Patients must decide where to seek care and may undergo an evaluation at a program unlikely to list them. While nearly 50.0% of recipients reside within 50 miles of their transplant program, over 30.0% travel 100 miles or more.⁶ Many candidates rely on their providers for decision-support while others seek data from national registries to inform decision making.⁷ However, existing reports, such as the Scientific Registry of Transplant Recipients (SRTR) Program Specific Reports (PSR) do not readily inform patients of variations in selection criteria across transplant programs. Studies of solid organ transplants demonstrate that patients are often unaware of options and value information tailored to patient characteristics.^8–11 There is a need to deconstruct silos of clinical knowledge and develop evidence-based resources to support decision-making on program selection and donor options. Such patient-centered information will improve patient experience and maximize the benefit offered by lung transplants

Here we describe the development of the website www.transplantcentersearch.org, intended to support patients by providing program-level data from the SRTR on each program in the US. The website allows patients to search for programs in the area of their choosing and receive information on the number of transplants and program factors that are most predictive of recipient survival after listing (e.g. 1-year survival after transplant). Patients also have the ability to review information on recipients and donors at each program to further differentiate program options. This feature is patient-specific; the search allows patients to enter information about their clinical background (e.g. age, prior lung transplant, body mass index (BMI)) and indicate general preferences for their treatment (e.g. travel distance, donor type) before receiving counts on recipients and donors matching their entries. Additional interactive features and a personalized decision guide offer further information and support on donor options (e.g. ex-vivo perfused or increased infectious risk donors) and patient-factors that may impact access to transplant.

Balancing Insight and Accessibility

Improving the quality and breadth of public reporting of program outcomes has been a priority of the SRTR and organizations like the Society of Thoracic Surgeons and others for over a decade.^12–16 Much of this work has focused on improving the clinical and regulatory efficacy of program metrics, but there has been a necessary underlying focus on how to make this information accessible to patients. Multidisciplinary teams comprised of clinical investigators, social scientists, design experts, and biostatisticians are necessary to negotiate a balance between providing sufficiently robust yet not overly complex information to patients. With this tension in mind, our team followed a mixed-methods approach (Tables S1 – 2) that leveraged stakeholder input to buttress the complexity of the information provided.

The development of the website involved two phases. In Phase I, we examined variations between programs using data on waitlist and transplant outcomes from the SRTR. The SRTR data system includes data on all donors, wait-listed candidates, and transplant recipients in the US, submitted by the members of the Organ Procurement and Transplantation Network (OPTN). The Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services provides oversight to the activities of the OPTN and SRTR contractors. We evaluated the variability in recipient and donor characteristics between July 1, 2017 and June 30, 2019 (See Appendix and Tables S3 – 4). This data informed the development of the profile entry page and responsive notifications that inform the patient if they have characteristics or treatment preferences that may impact access to transplant (e.g. travel distance, BMI, age, etc.).

In Phase II, we conducted interviews and focus groups with transplant candidates, recipients, and family members to gain insights into the decision making process, barriers and knowledge gaps, and past experience seeking access to the waitlist.^9–11 Participants were also shown mock-ups of the website with iterative changes made to reflect feedback from earlier participants (Table S5). This information was essential to refining the visual icons, descriptive text, and performance of interactive features (Table S6). By the conclusion of Phase II we created a functioning prototype of the search tool with feedback from critical stakeholders and data from SRTR that can be updated biannually. Following the close of Phase II we conducted usability testing of the prototype to refine the final version of the website. An example of the results from the patient-specific search are shown Figure 1.

Figure 1: Example of Patient-Specific Search Results Showing the Number of Recipients with Age over 65.

Description: Example of the patient-specific search results showing tiered measures for survival on the waitlist, getting a transplant faster, and 1 year post transplant survival. Results also show the number of recipients at each center over age 65. The tiered metrics for Survival on the Waitlist, Getting a Transplant Faster, and 1-Year Lung Survival are not impacted by the profile entries. Rather these metrics reflect risk adjusted models of program-level variations.

Conclusion

Selecting a transplant program can be a difficult decision for patients and families. Choices are often constrained by insurance and the feasibility and costs of having to travel for care. Gaps in knowledge about how programs vary according to which types of candidates and donors are accepted only make this process more difficult. By developing patient-centered and evidence-based resource, we may intervene in the process and enable patients to make informed decisions about their care. Though we feel such tools can benefit all patients and related stakeholders, they may provide enhanced benefit to patients with more resources and discretion over program options. At the same time, the tool provides patients with limited program options essential insight into the availability of expanded donor options that may improve access and reduce waits. Further study is warranted to mitigate barriers stemming from low healthcare literacy and numeracy, unequal access to the internet, and even trust. While the tool is publicly available to patients, multiple participants communicated a desire to use the tool in consultation with a provider. Focus groups with patients and providers may identify the optimal timing, frequency, and approach for using the tool in a clinic, support group, or home setting.

As our project moves forward, we are conducting randomized trials to evaluate the efficacy of the website. We will also evaluate strategies for integrating the website into clinical practice to increase and standardize use of the website. Efforts to support patients in need of transplant need not be limited to decision support or risk adjusted measures currently reported by SRTR. New metrics such as Intention-to-treat inspired metrics that encompass both waitlist and post-transplant mortality may provide enhanced decision-support and motivate changes in clinical practices. Likewise, additional support may be necessary after acceptance on the waitlist, especially if considering alternative donor options may improve patient outcomes. As the community of providers and investigators develops new knowledge and capabilities for assessing differences between programs, we must not lose sight of the decisions facing patients and the need for accessible and robust information to enable informed decision-making.

ABBREVIATIONS (including Appendices)

AHRQ

Agency for Healthcare Research and Quality

AVR

Aortic Valve Replacement

BMI

Body Mass Index

CABG

Coronary artery bypass graft

DCD

Donation after circulatory Death

HCV

Hepatitis C

HRSA

Health Resources and Services Administration

MVRR

Mitral Valve Repair / Replacement

OPTN

Organ Procurement and Transplantation Network

PHS

Public Health Service

PSR

Program Specific Report

SRTR

Scientific Registry of Transplant Recipients

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.