Faculty Bibliography

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.

UNLABELLED:Although upper extremity (UE) vascularized composite allotransplantation (VCA) aims to improve quality of life, relatively few have been performed worldwide to support evidence-based treatment and informed decision-making. METHODS/UNASSIGNED:We qualitatively examined factors contributing to anticipated and actual decision-making about UE VCA and perceptions of the elements of informed consent among people with UE amputations, and UE VCA candidates, participants, and recipients through in-depth interviews. Thematic analysis was used to analyze qualitative data. RESULTS/UNASSIGNED:Fifty individuals participated; most were male (78%) and had a mean age of 45 y and a unilateral amputation (84%). One-third (35%) were "a lot" or "completely" willing to pursue UE VCA. UE VCA decision-making themes included the utility of UE VCA, psychosocial impact of UE VCA and amputation on individuals' lives, altruism, and anticipated burden of UE VCA on lifestyle. Most respondents who underwent UE VCA evaluation (n = 8/10) perceived having no reasonable treatment alternatives. Generally, respondents (n = 50) recognized the potential for familial, societal, cultural, medical, and self-driven pressures to pursue UE VCA among individuals with amputations. Some (n = 9/50, 18%) reported personally feeling "a little," "somewhat," "a lot," or "completely" pressured to pursue UE VCA. Respondents recommended that individuals be informed about the option of UE VCA near the amputation date. CONCLUSIONS/UNASSIGNED:Our study identified psychosocial and other factors affecting decision-making about UE VCA, which should be addressed to enhance informed consent. Study participants' perceptions and preferences about UE VCA suggest re-examination of assumptions guiding the UE VCA clinical evaluation process.

BACKGROUND:The Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective (LDC), the first effort to create a lifetime registry for living donor candidates in the United States, requires transplant programs to register donor candidates while the SRTR conducts follow-up. METHODS:To better understand facilitators and barriers to program participation, we conducted a brief electronic survey of U.S. transplant program staff from October 26, 2021 to December 17, 2021. RESULTS:We received 132 responses, with at least one response from 87 living donor programs (46 kidney programs, 33 kidney and liver programs, and eight liver programs alone). We found 86% of program representatives strongly agreed or agreed that funding adequate to cover the cost of data collection would facilitate LDC participation, 92% agreed or strongly agreed with importance of electronic data submission options, and 74% reported that elimination of requirements to submit duplicative pre-operative information to the Organ Procurement and Transplantation Network (OPTN) would be helpful. Other potentially enabling factors include reduction in duration of OPTN postdonation follow-up requirements, ease-of-use, protection from data use for regulation, adequate data security, and equity in data access. CONCLUSION:This survey identifies potential targets to strengthen participation in the effort to create a national living donor registry in the United States. Collaboration and investment to overcome barriers to LDC participation among transplant programs are vital to generate long-term data on living donation for donor candidates, donors, and patients in need of transplant.

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.

BACKGROUND:Upper extremity (UE) vascularized composite allotransplantation (VCA; hand transplantation) is a reconstructive treatment option for patients with UE loss. Approximately 37 UE VCAs have been performed in the United States to date; thus, little is known about long-term psychosocial outcomes and whether the benefits outweigh the risks. To make an informed treatment decision, patients must understand the procedure, risks, and potential benefits of UE VCA. However, few educational resources are publicly available providing unbiased, comprehensive information about UE VCA. OBJECTIVE:This paper described the development of a neutral, and accessible, educational website supporting informed decision-making about UE VCA as a treatment option for individuals with UE amputations. METHODS:Website content development was informed by 9 focus groups conducted with individuals with UE amputations at 3 study sites. After initial website development, we conducted usability testing to identify ways to improve navigability, design, content, comprehension, and cultural sensitivity. Participants were administered the After-Scenario Questionnaire to assess user performance after completing navigational tasks, System Usability Scale to measure the perceived usability of the website, and Net Promoter Score to measure user satisfaction. Quantitative data were analyzed using descriptive statistics. Qualitative data were analyzed using rapid thematic analysis. RESULTS:A total of 44 individuals with UE amputations participated in focus groups (n=37, 84%) and usability testing (n=14, 32%). Most participants in the focus groups and usability testing were male (24/37, 65% and 11/14, 79%, respectively) and White (27/37, 73% and 9/14, 64%, respectively), had unilateral limb loss (22/37, 59% and 12/14, 86%, respectively), and had mean ages of 48 (SD 9.2) and 50 (SD 12.0) years, respectively. Focus group results are organized into accessibility, website design, website development, website tone and values, sitemap, terminology, images and videos, and tables and graphics. Usability testing revealed that participants had a positive impression of the website. The mean After-Scenario Questionnaire score of 1.3 to 2.3 across task scenarios indicated high satisfaction with website usability, the mean System Usability Scale score of 88.9 indicated user satisfaction with website usability, and the mean Net Promoter Score of 9.6 indicated that users were enthusiastic and would likely refer individuals to the website. CONCLUSIONS:The findings suggest that our educational website, Within Reach, provides neutral, patient-centered information and may be a useful resource about UE VCA for individuals with UE amputations, their families, and health care professionals. Health care professionals may inform UE VCA candidates about Within Reach to supplement current VCA education processes. Within Reach serves as a resource about treatment options for patients preparing for scheduled or recovering from traumatic UE amputations. Future research should assess whether Within Reach improves knowledge about UE VCA and enhances informed decision-making about UE VCA as a treatment option.

UNLABELLED:Following the outbreak of coronavirus disease 2019 (COVID-19) in the United States, the number of kidney waitlist additions and living-donor and deceased-donor kidney transplants (LDKT/DDKT) decreased substantially but began recovering within a few months. Since then, there have been several additional waves of infection, most notably, the Delta and Omicron surges beginning in August and December 2021, respectively. METHODS/UNASSIGNED:Using SRTR data, we compared observed waitlist registrations, waitlist mortality, waitlist removal due to deteriorating condition, LDKT, and DDKT over 5 distinct pandemic periods to expected events based on calculations from preepidemic data while accounting for seasonality and secular trends. RESULTS/UNASSIGNED:). CONCLUSIONS/UNASSIGNED:Despite exceptionally high COVID-19 incidence during the Omicron wave, the transplant system responded similarly to prior waves that imposed a lesser disease burden, demonstrating the transplant system's growing adaptations and resilience to this now endemic disease.

Introduction: Patient-provider communication can be ineffective because many patients feel intimidated or do not know what questions to ask providers. Many individuals with upper extremity (UE) amputations do not receive sufficient information about their treatment options, particularly vascularized composite allotransplantation (VCA). A question prompt sheet (QPS) is a list of questions that can empower patients to ask questions they find important, promote patient-provider communication, and increase patient knowledge, thereby fostering patient-centered care. This study developed a UE VCA-QPS and examined the UE VCA information needs among people with UE amputations.
Method(s): We conducted a multi-site, cross-sectional, sequential mixed-methods study among people with acquired UE amputations. In-depth interviews were first conducted to examine patients' information needs about UE VCA, which were synthesized through qualitative content analysis into a list of items for the initial UE VCA-QPS draft. The initial draft UE VCA-QPS included 130 items across 18 topics. Thereafter, semi-structured interviews were conducted to rate the importance of each item for inclusion in the VCA-QPS and elicit qualitative rationales for each rating. Quantitative data were analyzed by descriptive statistics. The multidisciplinary research team reviewed the subsequent draft UE VCA-QPS to reduce the number of items, improve wording, remove repetitive items, and ensure that items were clinically relevant.
Result(s): Eighty-nine people participated (63.9% participation rate), including people who had not pursued UE VCA (85%), UE VCA candidates and participants (9%), and UE VCA recipients (6%). Most were male (73%), White (74%), and had a mean age of 46 years, had a unilateral (84%) and below-elbow amputation (56%). Participants expressed interest in learning about UE VCA eligibility, evaluation process, surgery, risks, rehabilitation, and functional outcomes. The final UE VCA-QPS included 35 items, organized into 9 topics. Items were written at a 6th grade reading level. Most semi-structured interview participants (86%) were 'completely' or 'very' likely to use a UE VCA-QPS. Discussion and
Conclusion(s): Our findings suggest that people with UE amputations desire much information about myriad aspects of UE VCA. Future research should assess whether the UE VCA-QPS helps to meet patients' information needs and foster informed decision-making for UE VCA

Introduction: Little is known about how to measure the "success" of upper extremity (UE) vascularized composite allotransplantation (VCA), an innovative treatment for people with UE amputations. While providers have defined UE VCA "success" by quantitative functional, clinical, and quality- of-life (QoL) metrics, patients' definitions are lesser known. Our study assessed patients' definitions of UE VCA "success." Methods: We conducted in-depth interviews and focus groups among people with acquired UE amputations and UE VCA candidates, participants, and recipients at three sites to assess transplant "success" and collect demographic data. Transcripts were analyzed using thematic analysis.
Result(s): We conducted 50 interviews (61.7% participation rate) and 9 focus groups among 37 participants (75.5% participation rate), including people with acquired UE amputations (83.3%), UE VCA candidates and participants (11.1%), and UE VCA recipients (5.6%). Most were male (73.6%), White (70.8%), had a mean age of 45 years, and had a unilateral (68.1%) and below-elbow amputation (51.4%). Transplant "success" was defined in 6 ways: 1) Restoring function and sensation to enable activities: "I can bring a glass to my lips and drink. I can open a door. . . I can drive my car" (functional/QoL); 2) Accepting the transplanted limb into the recipient's identity: ". . .if I can deal with living with it, knowing that it's not actually my hand" (psychosocial); 3) Surgical attachment of the donor limb to the recipient without rejection: "I'm leaning towards, came out of the surgery, and all the systems are connected" (clinical); 4) Ensuring that the benefits outweigh the risks: "The addition of the functionality would have to outweigh. . . the side-effects of the anti-rejection drugs" (functional/QoL); 5) Attaining better outcomes compared to prosthetics: ". . .if you [are] just having basically a useless limb hanging there. . . it'd be worse than your prosthetic" (functional/QoL).
Conclusion(s): Our findings suggest that participants have multiple definitions of UE VCA "success" pertaining to improvements in the recipient's daily living experience, compared to no treatment and/or prosthetics. Informed consent should address whether patients' desired outcomes can be realized with UE VCA