Patient perspectives on liver transplant evaluation: A qualitative study.

OBJECTIVE: Liver transplant (LT) evaluation is a complex process for patients involving multi-step and parallel medical, surgical, and psychosocial assessments of a patient's appropriateness for transplant. Patients may experience difficulties in navigating the evaluation process, potentially leading to disengagement and resulting in further health decline or death prior to completing evaluation. We aimed to identify and characterize patients' perceptions of undergoing LT evaluation. METHODS: We performed fourteen 30-45 min, semi-structured interviews between 3/2021-5/2021 with patients at a large LT center. Using the constant comparison method, we individually noted themes within and across interviews and codes. RESULTS: Our analysis generated 5 thematic dimensions related to patient engagement (i.e., patient involvement/activation): (1) psychological impact of evaluation on patients' lives; (2) information received during evaluation; (3) prior medical experience of the patient; 4) communication between patients and transplant providers; and (5) support system of the patients. Among these dimensions, we identified 8 themes. CONCLUSION: LT patient engagement is a multi-dimensional component of LT evaluation that incorporates the psychological impact, information received, prior medical experience, communication, and support systems of patients. PRACTICAL IMPLICATIONS: This work can inform targeted interventions for increasing patient engagement during the LT evaluation process.

National Attitudes Toward Living Kidney Donation in the United States: Results of a Public Opinion Survey.

Rationale & Objective: Understanding national attitudes about living kidney donation will enable us to identify and address existing disincentives to living kidney donation. We performed a national survey to describe living kidney donation perceptions, perceived factors that affect the willingness to donate, and analyzed differences by demographic subgroups. Study Design: The survey items captured living kidney donation awareness, living kidney donation knowledge, willingness to donate, and barriers and facilitators to living kidney donation. Setting & Population: We surveyed 802 US adults (aged 25-65 years) in June 2021, randomly selected from an online platform with diverse representation. Analytical Approach: We developed summed, scaled indices to assess the association between the living kidney donation knowledge (9 items) and the willingness to donate (8 items) to self-reported demographic characteristics and other variables of interest using analysis of variance. All other associations for categorical questions were calculated using Pearson's χ2 and Fisher exact tests. We inductively evaluated free-text responses to identify additional barriers and facilitators to living kidney donation. Results: Most (86.6%) of the respondents reported that they might or would definitely consider donating a kidney while they were still living. Barriers to living kidney donation included concerns about the risk of the surgery, paying for medical expenses, and potential health effects. Facilitators to living kidney donation included having information on the donation surgery's safety, knowing that the donor would not have to pay for medical expenses related to the donation, and hearing living kidney donation success stories. Awareness of the ability to participate in kidney-paired donation was associated with a higher willingness to donate. Limitations: Potential for selection bias resulting from the use of survey panels and varied incentive amounts, and measurement error related to respondents' attention level. Conclusions: Most people would consider becoming a living kidney donor. Increased rates of living kidney donation may be possible with investment in culturally competent educational interventions that address risks associated with donating, policies that reduce financial disincentives, and communication campaigns that raise awareness of kidney-paired donation and living kidney donation.

Understanding what the general public thinks about living kidney donation will help to develop better education and increase the number of living kidney donors. We surveyed the public to find out: (1) how aware they are about the opportunity to donate a kidney while alive; (2) how much they know about living kidney donation; (3) whether they would be willing to donate; and (4) what would affect their willingness to donate. We found that teaching people about the risks of donating, decreasing costs related to donation, and raising awareness about it could increase the number of people willing to donate.

Artificial intelligence-based clinical decision support for liver transplant evaluation and considerations about fairness: A qualitative study.

BACKGROUND: The use of large-scale data and artificial intelligence (AI) to support complex transplantation decisions is in its infancy. Transplant candidate decision-making, which relies heavily on subjective assessment (ie, high variability), provides a ripe opportunity for AI-based clinical decision support (CDS). However, AI-CDS for transplant applications must consider important concerns regarding fairness (ie, health equity). The objective of this study was to use human-centered design methods to elicit providers' perceptions of AI-CDS for liver transplant listing decisions. METHODS: In this multicenter qualitative study conducted from December 2020 to July 2021, we performed semistructured interviews with 53 multidisciplinary liver transplant providers from 2 transplant centers. We used inductive coding and constant comparison analysis of interview data. RESULTS: Analysis yielded 6 themes important for the design of fair AI-CDS for liver transplant listing decisions: (1) transparency in the creators behind the AI-CDS and their motivations; (2) understanding how the AI-CDS uses data to support recommendations (ie, interpretability); (3) acknowledgment that AI-CDS could mitigate emotions and biases; (4) AI-CDS as a member of the transplant team, not a replacement; (5) identifying patient resource needs; and (6) including the patient's role in the AI-CDS. CONCLUSIONS: Overall, providers interviewed were cautiously optimistic about the potential for AI-CDS to improve clinical and equitable outcomes for patients. These findings can guide multidisciplinary developers in the design and implementation of AI-CDS that deliberately considers health equity.

Factors impacting the medication "Adherence Landscape" for transplant patients.

BACKGROUND: Medication non-adherence contributes to post-transplant graft rejection and failure; however, limited knowledge about the reasons for non-adherence hinders the development of interventions to improve adherence. We conducted focus groups with solid organ transplant recipients regarding overlooked challenges in the process of transplant medication self-management and examined their adherence strategies and perceptions towards the post-transplant medication regimen. METHODS: We conducted four focus groups with n = 31 total adult transplant recipients. Participants had received kidney, liver, or combined liver/kidney transplant at Johns Hopkins Hospital between 2014 and 2019. Focus groups were audio-recorded and transcribed. Transcripts were analyzed inductively, using the constant comparative method. RESULTS: Responses generally fell into two major categories: (1) barriers to adherence and (2) "adherence landscape". We define the former as factors directly labeled as barriers to adherence by participants and the latter as factors that heavily influence the post-transplant medication self-management process. CONCLUSIONS: We propose a shift in the way healthcare providers and researchers, address the question of medication non-adherence. Rather than asking why patients are non-adherent, we suggest that constructing and understanding patients' "adherence landscape" will provide an optimal way to align the goals of patients and providers and boost health outcomes.

Public Perceptions and Information Needs of VCA Transplantation and Donation: A Mixed Methods Study.

Vascularized Composite Allotransplantation (VCA) involves transplantation of multiple tissues from a donor to a recipient (e.g., skin, muscle, bone). Little is known about the US public's perceptions of and attitudes toward VCA organ donation. This multi-site, cross-sectional, mixed methods study involved focus groups and surveys to assess members of the general public's attitudes about VCA, and willingness and barriers to donate VCA organs. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. In focus groups (n = 6, 42 participants), most participants were female (57%) and Black (62%) with mean age of 42.6 years. Three main themes emerged: 1) awareness and perceptions of VCA, 2) purpose of VCA donation, 3) and barriers to VCA donation. Participants had heard little about VCA and sought information about VCA donation. Participants perceived VCA as challenging their concepts of "normality" and voiced concerns that VCA would create "Frankenstein[s]." Barriers to VCA donation included disruptions to end-of-life arrangements and information gaps regarding the donation process. Participants reported moderate to high willingness to donate their hands (69%) and face (50%) Public education efforts should address the specific needs and concerns of the public to facilitate VCA donation and family authorization.

Multicenter study of racial and ethnic inequities in liver transplantation evaluation: Understanding mechanisms and identifying solutions.

Racial and ethnic disparities persist in access to the liver transplantation (LT) waiting list; however, there is limited knowledge about underlying system-level factors that may be responsible for these disparities. Given the complex nature of LT candidate evaluation, a human factors and systems engineering approach may provide insights. We recruited participants from the LT teams (coordinators, advanced practice providers, physicians, social workers, dieticians, pharmacists, leadership) at two major LT centers. From December 2020 to July 2021, we performed ethnographic observations (participant-patient appointments, committee meetings) and semistructured interviews (N = 54 interviews, 49 observation hours). Based on findings from this multicenter, multimethod qualitative study combined with the Systems Engineering Initiative for Patient Safety 2.0 (a human factors and systems engineering model for health care), we created a conceptual framework describing how transplant work system characteristics and other external factors may improve equity in the LT evaluation process. Participant perceptions about listing disparities described external factors (e.g., structural racism, ambiguous national guidelines, national quality metrics) that permeate the LT evaluation process. Mechanisms identified included minimal transplant team diversity, implicit bias, and interpersonal racism. A lack of resources was a common theme, such as social workers, transportation assistance, non-English-language materials, and time (e.g., more time for education for patients with health literacy concerns). Because of the minimal data collection or center feedback about disparities, participants felt uncomfortable with and unadaptable to unwanted outcomes, which perpetuate disparities. We proposed transplant center-level solutions (i.e., including but not limited to training of staff on health equity) to modifiable barriers in the clinical work system that could help patient navigation, reduce disparities, and improve access to care. Our findings call for an urgent need for transplant centers, national societies, and policy makers to focus efforts on improving equity (tailored, patient-centered resources) using the science of human factors and systems engineering.

Telemedicine services for living kidney donation: A US survey of multidisciplinary providers.

Individuals considering living kidney donation face geographic, financial, and logistical challenges. Telemedicine can facilitate healthcare access/care coordination. Yet difficulties exist in telemedicine implementation and sustainability. We sought to examine centers' practices and providers' attitudes toward telemedicine to improve services for donors. We surveyed multidisciplinary providers from 194 active adult US living donor kidney transplant centers; 293 providers from 128 unique centers responded to the survey (center representation rate = 66.0%), reflecting 83.9% of practice by donor volume and 91.5% of US states/territories. Most centers (70.3%) plan to continue using telemedicine beyond the pandemic for donor evaluation/follow-up. Video was mostly used by nephrologists, surgeons, and psychiatrists/psychologists. Telephone and video were mostly used by social workers, while video or telephone was equally used by coordinators. Half of respondent nephrologists and surgeons were willing to accept a remote completion of physical exam; 68.3% of respondent psychiatrists/psychologists and social workers were willing to accept a remote completion of mental status exam. Providers strongly agreed that telemedicine was convenient for donors and would improve the likelihood of completing donor evaluation. However, providers (65.5%) perceived out-of-state licensing as a key policy/regulatory barrier. These findings help inform practice and underscore the instigation of policies to remove barriers using telemedicine to increase living kidney donation.