Faculty Bibliography

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 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.

BACKGROUND/UNASSIGNED:Upper extremity vascularized composite allotransplantation is a life-enhancing reconstructive treatment option that aims to improve recipients' quality of life and maximize function. This study assessed upper extremity vascularized composite allotransplantation patient selection criteria perceptions among individuals with upper extremity limb loss. The perceptions of individuals with upper extremity limb loss on patient selection criteria may enable vascularized composite allotransplantation centers to improve criteria to avoid mismatched expectations about the posttransplant vascularized composite allotransplantation experience and outcomes. Realistic patient expectations may increase patient adherence, improve outcomes, and reduce vascularized composite allotransplantation graft loss. METHODS/UNASSIGNED:We conducted in-depth interviews with civilian and military service members with upper extremity limb loss and upper extremity vascularized composite allotransplantation candidates, participants, and recipients from three US institutions. Interviews assessed perceptions of patient selection criteria for suitability as a candidate for upper extremity vascularized composite allotransplantation. Thematic analysis was used to analyze qualitative data. RESULTS/UNASSIGNED:A total of 50 individuals participated (66% participation rate). Most participants were male (78%), White (72%), with a unilateral limb loss (84%), and a mean age of 45 years. Six themes emerged regarding upper extremity vascularized composite allotransplantation patient selection criteria, including support for candidates who: (1) are of younger age, (2) are in good physical health, (3) have mental stability, (4) are willing to "put in the work," (5) have specific amputation characteristics, and (6) have sufficient social support. Patients had preferences about selecting candidates with unilateral versus bilateral limb loss. CONCLUSIONS/UNASSIGNED:Our findings suggest that numerous factors, including medical, social, and psychological characteristics, inform patients' perceptions of patient selection criteria for upper extremity vascularized composite allotransplantation. Patient perceptions of patient selection criteria should inform the development of validated screening measures that optimize patient outcomes.

OBJECTIVE/UNASSIGNED:Upper extremity vascularized composite allotransplantation is an innovative treatment option for people with upper extremity amputations. Limited patient-relevant long-term outcomes data about transplant success may impede patients' informed treatment decision-making. We assessed perceptions of what constitutes upper extremity vascularized composite allotransplantation success among individuals with upper extremity amputations. METHODS/UNASSIGNED:This multisite study entailed interviews and focus groups with individuals with upper extremity amputations and upper extremity vascularized composite allotransplantation candidates, participants, and recipients. We examined perceptions of transplant success and preferences for five upper extremity vascularized composite allotransplantation outcomes. Qualitative data were analyzed using thematic analysis; and quantitative data were analyzed using descriptive statistics. RESULTS/UNASSIGNED:In all, 50 individuals participated in interviews (61.7% participation rate), and 37 participated in nine focus groups (75.5% participation rate). Most were White (72%, 73%), had a mean age of 45 and 48 years, and had a unilateral amputation (84%, 59%), respectively. Participants conceptualized upper extremity vascularized composite allotransplantation success as transplant outcomes: (1) restoring function and sensation to enable new activities; (2) accepting the transplanted limb into one's identity and appearance; (3) not having transplant rejection; (4) attaining greater quality of life compared to prosthetics; and (5) ensuring benefits outweigh risks. Participants rated their most important upper extremity vascularized composite allotransplantation outcomes as follows: not having transplant rejection, not developing health complications, grasping objects, feeling touch and temperature, and accepting the upper extremity vascularized composite allotransplantation into your identity. CONCLUSION/UNASSIGNED:Individuals with upper extremity amputations maintain several conceptions of vascularized composite allotransplantation success, spanning functional, psychosocial, clinical, and quality of life outcomes. Providers should address patients' conceptions of success to improve informed consent discussions and outcomes reporting for upper extremity vascularized composite allotransplantation.

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

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.