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.

Identifying Needs and Barriers to Engage Family Members in Transplant Candidate Care.

INTRODUCTION: Friends and family members provide critical support to patients on the waitlist for deceased donor kidney transplantation. However, little is known about how best to support and engage them effectively to improve patient outcomes. METHODS: We conducted 5 focus groups with the family members of patients on the waitlist for a deceased donor kidney (n=23) to identify individual- and group-level targets for an intervention. Discussions encouraged participants to reflect on their support roles, experiences at the transplant evaluation, interactions with providers, knowledge of transplant options and expected outcomes. Transcripts of study sessions were coded using an iterative and inductive process. RESULTS: The thematic analysis produced two main themes related to experiences providing care to patients on the waitlist for kidney transplantation. First, participants revealed that supporting a patient on the waitlist created challenges that reverberate through their entire social structure. Family members discussed frustrations with adapting to their patient's kidney health needs, feelings of isolation, and barriers to identifying and building effective support networks. Second, participants described multiple challenges that prevented their patient-family unit from making informed decisions about transplant care. These challenges included communication with their patient, patients resisting help, difficulty understanding the information, and feeling helpless. CONCLUSION: Family members providing care to patients with end-stage kidney disease require targeted support to overcome the unique challenges associated with their role in helping to meet their patient's clinical needs. Interventions to engage friends and family members in the care of kidney transplant candidates need to effectively address these challenges.

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.

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.

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.

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.

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.