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1.
Open Forum Infect Dis ; 11(3): ofae015, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38434612

ABSTRACT

Background: Organ transplantation from donors with hepatitis C viremia (HCV) to recipients without HCV (HCV D+/R-) has excellent medical outcomes. Less is known about the psychosocial impact and experiences of HCV D+/R- recipients, particularly outside of clinical trials. Methods: We conducted in-depth, semistructured interviews with 24 HCV D+/R- recipients (kidney, n = 8; lung, n = 7; liver, n = 5; heart, n = 3; simultaneous heart and kidney, n = 1) who received transplants outside of clinical trials and were treated for HCV after transplant to assess their experiences and perspectives. We used thematic analysis to analyze the interviews. Results: Interviewees' reasons for accepting an HCV D + organ were based on perceived benefits and confidence in the effectiveness of HCV treatment. The majority (62%) received HCV treatment within 1 month after transplant (range, 1 day-2 months). Most interviewees reported positive transplant outcomes, including reduced wait times and improved survival, health, physical activity, and quality of life. Overall, themes and experiences did not differ significantly between different organ transplant types. Generally, interviewees did not perceive stigma from those aware of the HCV D+ transplant; yet, disclosure was selective and a few recipients reported concerns from family members about posttransplant HCV transmission risk. Other common concerns included treatment costs and delays, which were not always anticipated by recipients. Conclusions: Our findings suggest that HCV D+/R- kidney, liver, and heart and lung transplant recipients outside of clinical trials had overall positive experiences. However, HCV transmission risk, treatments costs, and treatment delays were a source of concern that might be mitigated with targeted pretransplant education.

2.
Transpl Int ; 35: 10752, 2022.
Article in English | MEDLINE | ID: mdl-36451683

ABSTRACT

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.


Subject(s)
Organ Transplantation , Vascularized Composite Allotransplantation , Female , Humans , Adult , Male , Cross-Sectional Studies , Public Opinion , Tissue Donors
3.
BMC Geriatr ; 22(1): 566, 2022 07 08.
Article in English | MEDLINE | ID: mdl-35804289

ABSTRACT

BACKGROUND: Among adult kidney transplant (KT) candidates, 21% are frail and 55% have cognitive impairment, increasing the risk of pre- and post-KT mortality. Centers often assess frailty status and cognitive function during transplant evaluation to help identify appropriate candidate. Yet, there are no ethical guidelines regarding the use of frailty and cognitive function during this evaluation. We seek to develop a clinical consensus on balancing utility and justice in access to KT for frail and cognitively impaired patients. METHODS: Twenty-seven experts caring for ESRD patients completed a two-round Delphi panel designed to facilitate consensus (> 80% agreement). RESULTS: Experts believed that denying patients transplantation based solely on expected patient survival was inequitable to frail or cognitively impaired candidates; 100% agreed that frailty and cognitive impairment are important factors to consider during KT evaluation. There was consensus that health related quality of life and social support are important to consider before waitlisting frail or cognitively impaired patients. Experts identified important factors to consider before waitlisting frail (likely to benefit from KT, frailty reversibility, age, and medical contraindications) and cognitively impaired (degree of impairment and medication adherence) patients. CONCLUSIONS: Clinical experts believed it was ethically unacceptable to allocate organs solely based on patients' expected survival; frailty and cognitive impairment should be measured at evaluation when weighed against other clinical factors. Ethical guidelines regarding the use of frailty and cognitive function during KT evaluation ought to be developed.


Subject(s)
Cognitive Dysfunction , Frailty , Kidney Transplantation , Aged , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/therapy , Delphi Technique , Frail Elderly/psychology , Frailty/diagnosis , Frailty/therapy , Humans , Quality of Life
4.
AJOB Empir Bioeth ; 13(4): 263-274, 2022.
Article in English | MEDLINE | ID: mdl-35802563

ABSTRACT

BACKGROUND: The allocation of scarce deceased donor kidneys is a complex process. Transplant providers are increasingly relying on constructs such as frailty and cognitive function to guide kidney transplant (KT) candidate selection. Patient views of the ethical issues surrounding the use of such constructs are unclear. We sought to assess KT candidates' attitudes and beliefs about the use of frailty and cognitive function to guide waitlist selection. METHODS: KT candidates were randomly recruited from an ongoing single-center cohort study of frailty and cognitive function. Semi-structured interviews were conducted, and thematic analysis was performed. Inductively derived themes were mapped onto bioethics principles. RESULTS: Twenty interviews were conducted (65% contact rate, 100% participation rate) (60% male; 70% White). With respect to the use of frailty and cognitive function in waitlisting decisions, four themes emerged in which participants: (1) valued maximizing a scarce resource (utility); (2) prioritized equal access to all patients (equity); (3) appreciated a proportional approach to the use of equity and utility (precautionary utility); and (4) sought to weigh utility- and equity-based concerns regarding social support. While some participants believed frailty and cognitive function were useful constructs to maximize utility, others believed their use would jeopardize equity. Patients were uncomfortable with using single factors such as frailty or cognitive impairment to deny someone access to transplantation; participants instead encouraged using the constructs to identify opportunities for intervention to improve frailty and cognitive function prior to KT. CONCLUSIONS: KT candidates' values mirrored the current allocation strategy, seeking to balance equity and utility in a just manner, albeit with conflicting viewpoints on the appropriate use of frailty and cognitive impairment in waitlisting decisions.


Subject(s)
Frailty , Kidney Transplantation , Humans , Male , Female , Cohort Studies , Prospective Studies , Cognition
5.
Curr Transplant Rep ; 8(4): 314-323, 2021.
Article in English | MEDLINE | ID: mdl-34812403

ABSTRACT

PURPOSE OF REVIEW: The HIV Organ Policy Equity (HOPE) Act permits transplantation from donors-with-HIV to recipients-with-HIV (HIV D + /R +). We assess HOPE implementation, summarizing progress and challenges at clinical, legislative, and community levels. RECENT FINDINGS: As of July 2021, there have been 300 kidney and 87 liver transplants within HOPE research studies in the USA. Early HIV D + /R + kidney transplant outcomes show excellent patient survival (100%) and graft survival (92%). The number of HOPE donors continues to grow annually but remains lower than projections. State-level policy restrictions are identified in 34 states; however, these do not seem to have impacted practice; 16 states have passed new legislation to facilitate HIV D + /R + transplantation. Stigma related to HIV and low donor registration rates pose additional barriers. SUMMARY: Early outcomes of HOPE Act transplants are encouraging. Progress to reach full implementation and realize the full benefit of this innovation is ongoing.

6.
Transplant Direct ; 7(9): e745, 2021 Sep.
Article in English | MEDLINE | ID: mdl-34386582

ABSTRACT

BACKGROUND: HIV+ donor (HIV D+) to HIV+ recipient (HIV R+) transplantation involves ethical considerations related to safety, consent, stigma, and privacy, which could be better understood through studying patients' actual experiences. METHODS: We interviewed kidney and liver transplant recipients enrolled in clinical trials evaluating HIV D+/R+ transplantation at 4 centers regarding their decision-making process, the informed consent process, and posttransplant experiences. Participants were interviewed at-transplant (≤3 wk after transplant), posttransplant (≥3 mo after transplant), or both time points. Interviews were analyzed thematically using constant comparison of inductive and deductive coding. RESULTS: We conducted 35 interviews with 22 recipients (15 at-transplant; 20 posttransplant; 13 both time points; 85% participation). Participants accepted HIV D+ organs because of perceived benefits and situational factors that increased their confidence in the trials and outweighed perceived clinical and social risks. Participants reported positive experiences with the consent process and the trial. Some described HIV-related stigma and emphasized the need for privacy; others believed HIV D+/R+ transplantation could help combat such stigma. There were some indications of possible therapeutic misestimation (overestimation of benefits or underestimation of risks of a study). Some participants believed that HIV+ transplant candidates were unable to receive HIV-noninfected donor organs. CONCLUSIONS: Despite overall positive experiences, some ethical concerns remain that should be mitigated going forward. For instance, based on our findings, targeted education for HIV+ transplant candidates regarding available treatment options and for transplant teams regarding privacy and stigma concerns would be beneficial.

7.
Transplant Direct ; 7(7): e713, 2021 Jul.
Article in English | MEDLINE | ID: mdl-34131585

ABSTRACT

A widely accepted severe acute respiratory syndrome 2 (SARS-CoV-2) vaccine could protect vulnerable populations, but the willingness of solid organ transplant recipients (SOTRs) to accept a potential vaccine remains unknown. METHODS: We conducted a national survey of 1308 SOTRs and 1617 non-SOTRs between November 11 and December 2, 2020 through the network of the National Kidney Foundation. RESULTS: Respondents were largely White (73.2%), female (61.1%), and college graduates (56.2%). Among SOTRs, half (49.5%) were unsure or would be unwilling to receive a SARS-CoV-2 vaccine once available. Major concerns included potential side effects (85.2%), lack of rigor in the testing and development process (69.7%), and fear of incompatibility with organ transplants (75.4%). Even after the announcement of the high efficacy of the mRNA-1273 vaccine (Moderna Inc.) at the time of survey distribution, likeliness to receive a vaccine only slightly increased (53.5% before announcement versus 57.8% after the announcement). However, 86.8% of SOTRs would accept a vaccine if recommended by a transplant provider. CONCLUSIONS: SOTRs reported skepticism in receiving a potential SARS-CoV-2 vaccine, even after announcements of high vaccine efficacy. Reassuringly, transplant providers may be the defining influence in vaccine acceptance and will likely have a critical role to play in promoting vaccine adherence.

8.
Transplant Direct ; 6(12): e626, 2020 Dec.
Article in English | MEDLINE | ID: mdl-33204824

ABSTRACT

The framework currently used for living kidney donor selection is based on estimation of acceptable donor risk, under the premise that benefits are only experienced by the recipient. However, some interdependent donors might experience tangible benefits from donation that cannot be considered in the current framework (ie, benefits experienced directly by the donor that improve their daily life, well-being, or livelihood). METHODS: We conducted semistructured interviews with 56 living kidney donors regarding benefits experienced from donation. Using a qualitative descriptive and constant comparative approach, themes were derived inductively from interview transcripts by 2 independent coders; differences in coding were reconciled by consensus. RESULTS: Of 56 participants, 30 were in interdependent relationships with their recipients (shared household and/or significant caregiving responsibilities). Tangible benefits identified by participants fell into 3 major categories: health and wellness benefits, time and financial benefits, and interpersonal benefits. Participants described motivations to donate a kidney based on a more nuanced understanding of the benefits of donation than accounted for by the current "acceptable risk" paradigm. DISCUSSION: Tangible benefits for interdependent donors may shift the "acceptable risk" paradigm (where no benefit is assumed) of kidney donor evaluation to a risk/benefit paradigm more consistent with other surgical decision-making.

9.
Clin Transplant ; 34(12): e14086, 2020 12.
Article in English | MEDLINE | ID: mdl-32918766

ABSTRACT

In our first survey of transplant centers in March 2020, >75% of kidney and liver programs were either suspended or operating under restrictions. To safely resume transplantation, we must understand the evolving impact of COVID-19 on transplant recipients and center-level practices. We therefore conducted a six-week follow-up survey May 7-15, 2020, and linked responses to the COVID-19 incidence map, with a response rate of 84%. Suspension of live donor transplantation decreased from 72% in March to 30% in May for kidneys and from 68% to 52% for livers. Restrictions/suspension of deceased donor transplantation decreased from 84% to 58% for kidneys and from 73% to 42% for livers. Resuming transplantation at normal capacity was envisioned by 83% of programs by August 2020. Exclusively using local recovery teams for deceased donor procurement was reported by 28%. Respondents reported caring for a total of 1166 COVID-19-positive transplant recipients; 25% were critically ill. Telemedicine challenges were reported by 81%. There was a lack of consensus regarding management of potential living donors or candidates with SARS-CoV-2. Our findings demonstrate persistent heterogeneity in center-level response to COVID-19 even as transplant activity resumes, making ongoing national data collection and real-time analysis critical to inform best practices.


Subject(s)
COVID-19/prevention & control , Health Services Accessibility/trends , Organ Transplantation/trends , Organizational Policy , Practice Patterns, Physicians'/trends , Telemedicine/trends , Tissue and Organ Procurement/trends , Adult , COVID-19/diagnosis , COVID-19/epidemiology , COVID-19/etiology , COVID-19 Testing , Clinical Decision-Making , Follow-Up Studies , Health Care Surveys , Health Services Accessibility/organization & administration , Humans , Incidence , Infection Control/methods , Infection Control/trends , Organ Transplantation/methods , Postoperative Complications/epidemiology , Postoperative Complications/prevention & control , Postoperative Complications/virology , Tissue and Organ Procurement/organization & administration , United States/epidemiology
10.
Transplant Direct ; 6(7): e566, 2020 Jul.
Article in English | MEDLINE | ID: mdl-32766421

ABSTRACT

BACKGROUND: Caring for dialysis patients is difficult, and this burden often falls on a spouse or cohabiting partner (henceforth referred to as caregiver-partners). At the same time, these caregiver-partners often come forward as potential living kidney donors for their loved ones who are on dialysis (henceforth referred to as patient-partners). Caregiver-partners may experience tangible benefits to their well-being when their patient-partner undergoes transplantation, yet this is seldom formally considered when evaluating caregiver-partners as potential donors. METHODS: To quantify these potential benefits, we surveyed caregiver-partners of dialysis patients and kidney transplant (KT) recipients (N = 99) at KT evaluation or post-KT. Using validated tools, we assessed relationship satisfaction and caregiver burden before or after their patient-partner's dialysis initiation and before or after their patient-partner's KT. RESULTS: Caregiver-partners reported increases in specific measures of caregiver burden (P = 0.03) and stress (P = 0.01) and decreases in social life (P = 0.02) and sexual relations (P < 0.01) after their patient-partner initiated dialysis. However, after their patient-partner underwent KT, caregiver-partners reported improvements in specific measures of caregiver burden (P = 0.03), personal time (P < 0.01), social life (P = 0.01), stress (P = 0.02), sexual relations (P < 0.01), and overall quality of life (P = 0.03). These improvements were of sufficient impact that caregiver-partners reported similar levels of caregiver burden after their patient-partner's KT as before their patient-partner initiated dialysis (P = 0.3). CONCLUSIONS: These benefits in caregiver burden and relationship quality support special consideration for spouses and partners in risk-assessment of potential kidney donors, particularly those with risk profiles slightly exceeding center thresholds.

11.
Clin Transplant ; 34(11): e14066, 2020 11.
Article in English | MEDLINE | ID: mdl-32810365

ABSTRACT

As the field of Vascular Composite Allotransplantation (VCA) grows, demand for VCA donations will increase. The public should be made aware of this treatment option to support patients' informed decision-making and authorization for deceased donation. We assessed the availability and quality of existing VCA public education materials from organ procurement organizations (OPOs), transplant centers, the Organ Procurement and Transplant Network, Veterans Affairs, and the Department of Defense. A content analysis was performed to identify topics covered and important gaps. In total, 1314 public education materials were analyzed, including OPO Facebook posts (61.6%), OPO Twitter posts (29.9%), websites (6.4%), and written documents (eg, fact sheets, research reports) (2.1%). Upper extremity (34.7%) and face (34.5%) transplants were more commonly covered than reproductive (6.4%) or other VCA types (2.8%). Most materials (76.6%) referenced a specific VCA story. However, few materials described which patient population could benefit from VCA (eg, Veterans, amputees, burn victims, 16.4%), the authorization requirements for VCA donation (6.6%), or the appearance of transplanted VCA organs (1.2%). Current VCA public education materials do not adequately educate the public. More comprehensive education materials are needed to prepare the public to authorize VCA donation, become potential donors, or learn about transplant options.


Subject(s)
Composite Tissue Allografts , Tissue and Organ Procurement , Transplants , Vascularized Composite Allotransplantation , Humans , Tissue Donors , United States
12.
Clin Transplant ; 34(11): e14064, 2020 11.
Article in English | MEDLINE | ID: mdl-32808320

ABSTRACT

The evaluation and care of non-US citizen, non-US residents who wish to come to the United States to serve as international living kidney donors (ILKDs) can pose unique challenges. We surveyed US transplant programs to better understand practices related to ILKD care. We distributed the survey by email and professional society list-servs (Fall 2018, assessing 2017 experience). Eighty-five programs responded (36.8% program response rate), of which 80 considered ILKD candidates. Only 18 programs had written protocols for ILKD evaluation. Programs had a median of 3 (range: 0,75) ILKD candidates who initiated contact during the year, from origin countries spanning 6 continents. Fewer (median: 1, range: 0,25) were approved for donation. Program-reported reasons for not completing ILKD evaluations included visa barriers (58.6%), inability to complete evaluation (34.3%), concerns regarding follow-up (31.4%) or other healthcare access (28.6%), and financial impacts (21.4%). Programs that did not evaluate ILKDs reported similar concerns. Staff time required to evaluate ILKDs was estimated as 1.5-to-3-times (47.9%) or >3-times (32.9%) that needed for domestic candidates. Among programs accepting ILKDs, on average 55% reported successful completion of 1-year follow-up. ILKD evaluation is a resource-intensive process with variable outcomes. Planning and commitment are necessary to care for this unique candidate group.


Subject(s)
Kidney Transplantation , Humans , Kidney , Living Donors , Surveys and Questionnaires , United States
13.
SAGE Open Med ; 8: 2050312120940423, 2020.
Article in English | MEDLINE | ID: mdl-32695395

ABSTRACT

OBJECTIVES: Psychosocial factors are important predictors of medication adherence, and subsequently graft survival, in solid organ transplantation. Early experiences suggest this may also be the case in vascularized composite allotransplantation. METHODS: Using validated tools, we surveyed upper extremity transplant recipients at two centers to assess depression (Patient Health Questionnaire-9), personality (Ten-Item Personality Inventory), anxiety (Generalized Anxiety Disorder 7-Item Scale), post-traumatic stress disorder (Primary Care Post-Traumatic Stress Disorder Screen for Diagnostic and Statistical Manual of Mental Disorders, 5th Edition), and social support (Multidimensional Scale of Perceived Social Support). Medication adherence among vascularized composite allotransplantation recipients at two centers was assessed by a member of the clinical research team using the recipients' medical records. RESULTS: Medication adherence was reported for 12 vascularized composite allotransplantation recipients, and 9 vascularized composite allotransplantation recipients completed psychosocial assessments. Most recipients were believed to be adherent to their immunosuppression, however, three recipients were believed to be non-adherent and a member of the clinical team had discussed non-adherence at least once with five recipients. Results from the psychosocial assessment (n = 9) indicated that eight participants had high levels of social support, and eight demonstrated high levels of conscientiousness which have been associated with better medication adherence in solid organ transplantation. However, three participants demonstrated mild anxiety, two demonstrated minimal symptoms of depression, and one demonstrated post-traumatic stress disorder which have been associated with worse medication adherence in solid organ transplantation. CONCLUSION: These findings lay the groundwork for future assessments of the role psychosocial factors play in facilitating medication adherence and broader transplant outcomes.

14.
J Acquir Immune Defic Syndr ; 85(1): 88-92, 2020 09 01.
Article in English | MEDLINE | ID: mdl-32427721

ABSTRACT

BACKGROUND: HIV-infected (HIV+) donor to HIV+ recipient (HIV D+/R+) transplantation might improve access to transplantation for people living with HIV. However, it remains unknown whether transplant candidates living with HIV will accept the currently unknown risks of HIV D+/R+ transplantation. METHODS: We surveyed transplant candidates living with HIV from 9 US transplant centers regarding willingness to accept HIV+ donor organs. RESULTS: Among 116 participants, the median age was 55 years, 68% were men, and 78% were African American. Most were willing to accept HIV+ living donor organs (87%), HIV+ deceased donor organs (84%), and increased infectious risk donor organs (70%). Some (30%) were concerned about HIV superinfection; even among these respondents, 71% were willing to accept an HIV D+ organ. Respondents from centers that had already performed a transplant under an HIV D+/R+ transplantation research protocol were more willing to accept HIV+ deceased donor organs (89% vs. 71%, P = 0.04). Respondents who chose not to enroll in an HIV D+/R+ transplantation research protocol were less likely to believe that HIV D+/R+ transplantation was safe (45% vs. 77%, P = 0.02), and that HIV D+ organs would work similar to HIV D- organs (55% vs. 77%, P = 0.04), but more likely to believe they would receive an infection other than HIV from an HIV D+ organ (64% vs. 13%, P < 0.01). CONCLUSIONS: Willingness to accept HIV D+ organs among transplant candidates living with HIV does not seem to be a major barrier to HIV D+/R+ transplantation and may increase with growing HIV D+/R+ transplantation experience.


Subject(s)
HIV Infections/virology , HIV-1 , Tissue Donors , Transplant Recipients , Transplants/virology , Female , Humans , Male , Middle Aged , Organ Transplantation , Risk Factors , Transplants/microbiology
15.
Am J Transplant ; 20(7): 1809-1818, 2020 07.
Article in English | MEDLINE | ID: mdl-32282982

ABSTRACT

COVID-19 is a novel, rapidly changing pandemic: consequently, evidence-based recommendations in solid organ transplantation (SOT) remain challenging and unclear. To understand the impact on transplant activity across the United States, and center-level variation in testing, clinical practice, and policies, we conducted a national survey between March 24, 2020 and March 31, 2020 and linked responses to the COVID-19 incidence map. Response rate was a very high 79.3%, reflecting a strong national priority to better understand COVID-19. Complete suspension of live donor kidney transplantation was reported by 71.8% and live donor liver by 67.7%. While complete suspension of deceased donor transplantation was less frequent, some restrictions to deceased donor kidney transplantation were reported by 84.0% and deceased donor liver by 73.3%; more stringent restrictions were associated with higher regional incidence of COVID-19. Shortage of COVID-19 tests was reported by 42.5%. Respondents reported a total of 148 COVID-19 recipients from <1 to >10 years posttransplant: 69.6% were kidney recipients, and 25.0% were critically ill. Hydroxychloroquine (HCQ) was used by 78.1% of respondents; azithromycin by 46.9%; tocilizumab by 31.3%, and remdesivir by 25.0%. There is wide heterogeneity in center-level response across the United States; ongoing national data collection, expert discussion, and clinical studies are critical to informing evidence-based practices.


Subject(s)
Coronavirus Infections/prevention & control , Coronavirus Infections/transmission , Organ Transplantation/trends , Pandemics/prevention & control , Pneumonia, Viral/prevention & control , Pneumonia, Viral/transmission , Adenosine Monophosphate/analogs & derivatives , Adenosine Monophosphate/therapeutic use , Alanine/analogs & derivatives , Alanine/therapeutic use , Antibodies, Monoclonal, Humanized/therapeutic use , Betacoronavirus , COVID-19 , COVID-19 Testing , Clinical Laboratory Techniques/statistics & numerical data , Coronavirus Infections/diagnosis , Coronavirus Infections/drug therapy , Critical Illness , Evidence-Based Medicine , Health Policy , Humans , Hydroxychloroquine/therapeutic use , Incidence , Kidney Failure, Chronic/complications , Kidney Failure, Chronic/surgery , Kidney Transplantation/statistics & numerical data , Kidney Transplantation/trends , Liver Transplantation/statistics & numerical data , Liver Transplantation/trends , Living Donors , Organ Transplantation/legislation & jurisprudence , Organ Transplantation/statistics & numerical data , Resource Allocation , SARS-CoV-2 , Surveys and Questionnaires , Tissue Donors , Transplant Recipients , United States , COVID-19 Drug Treatment
16.
Am J Transplant ; 20(2): 546-552, 2020 02.
Article in English | MEDLINE | ID: mdl-31552699

ABSTRACT

Although minimized by expert evaluation, operative technique, and postoperative care, the extremely low risk of perioperative mortality following living kidney or liver donation will never be eliminated. Furthermore, anticipation of poor donor outcome may simultaneously be a source of anxiety for physicians and programs and also be a circumstance for which they are unprepared. We conducted a national survey of US transplant surgeons to understand experiences with and systemic preparedness for the event of a living donor death. Respondents represented 87 unique transplant programs (71 kidney and 16 liver donor programs). Perioperative deaths were rare, as expected. Although most respondents (N = 57, 64% of total respondents; 88% of liver programs) reported being moderately to extremely concerned about a future living donor death at their institution, only 30 (33% of total program respondents) had a written plan available in the case of such an event; 63% of programs would find guidance and recommendations useful. To help address this gap, the American Society of Transplantation Live Donor Community of Practice (AST LDCOP) developed Living Donor Crisis Management Plan Talking Points suitable to guide crisis plan development at transplant programs.


Subject(s)
Crew Resource Management, Healthcare/organization & administration , Living Donors/ethics , Humans , Kidney Transplantation , Liver Transplantation , Surveys and Questionnaires , Tissue and Organ Procurement
17.
Transplantation ; 104(3): 603-612, 2020 03.
Article in English | MEDLINE | ID: mdl-31283666

ABSTRACT

BACKGROUND: End-stage kidney disease (ESKD) patients are living longer, often into older age, and commonly pursue kidney transplantation. Successful aging, a multidimensional construct of physical and social wellbeing, has been expanded and adapted for patients with chronic disease. However, perceptions of, barriers to, and experiences with successful aging among adults with ESKD are unclear and likely differ based on whether they have received a kidney transplant. METHODS: Ten focus groups were held with 39 total ESKD patients aged ≥50 years (19 transplant candidates, 20 transplant recipients). Transcriptions were analyzed thematically by 2 independent coders using an inductive, constant comparative approach. RESULTS: The mean age was 64.8 (SD = 7.5); 51% were African American and 64% were males. Six themes were identified: familiarity with successful aging, perceptions of successful aging after ESKD diagnosis, barriers to successful aging, experiences with successful aging among transplant candidates, experiences with successful aging among transplant recipients, and suggested interventions. While all participants sought to achieve successful aging while living with ESKD, experiences with successful aging differed between candidates and recipients. Candidates struggled with the limitations of dialysis; some viewed transplantation as an opportunity to age successfully, while others were resigned to the drawbacks of dialysis. In contrast, transplant recipients were optimistic about their ability to age successfully, believing their transplant facilitated successful aging. Participants believed support groups for adults with ESKD and more thoughtful health care for aging adults would promote successful aging. CONCLUSIONS: Adults with ESKD may benefit from discussions with their clinicians and caregivers about goals, barriers, and strategies regarding successful aging.


Subject(s)
Aging/psychology , Kidney Failure, Chronic/therapy , Kidney Transplantation/psychology , Quality of Life , Renal Dialysis/psychology , Transplant Recipients/psychology , Aged , Female , Focus Groups , Humans , Kidney Failure, Chronic/complications , Kidney Failure, Chronic/psychology , Male , Middle Aged , Qualitative Research , Renal Dialysis/adverse effects , Treatment Outcome
18.
Transplantation ; 104(2): 349-356, 2020 02.
Article in English | MEDLINE | ID: mdl-31343576

ABSTRACT

BACKGROUND: Given the potential utility of frailty, a clinical phenotype of decreased physiologic reserve and resistance to stressors, to predict postkidney transplant (KT) outcomes, we sought to understand the perceptions and practices regarding frailty measurement in US KT programs. METHODS: Surveys were emailed to American Society of Transplantation Kidney/Pancreas Community of Practice members and 202 US transplant programs (November 2017 to April 2018). Program characteristics were gleaned from Scientific Registry of Transplant Recipients. RESULTS: The 133 responding programs (response rate = 66%) represented 77% of adult KTs and 79% of adult KT candidates in the United States. Respondents considered frailty to be a useful concept in evaluating candidacy (99%) and endorsed a need to develop a frailty measurement specific to KT (92%). Frailty measurement was more common during candidacy evaluation (69%) than during KT admission (28%). Of the 202 programs, 38% performed frailty assessments in all candidates while 23% performed assessments only for older candidates. There was heterogeneity in the frailty assessment method; 18 different tools were utilized to measure frailty. The most common tool was a timed walk test (19%); 67% reported performing >1 tool. Among programs that measure frailty, 53% reported being less likely to list frail patients for KT. CONCLUSIONS: Among US KT programs, frailty is recognized as a clinically relevant construct and is commonly measured at evaluation. However, there is considerable heterogeneity in the tools used to measure frailty. Efforts to identify optimal measurement of frailty using either an existing or a novel tool and subsequent standardization of its measurement and application across KT programs should be considered.


Subject(s)
Frailty/complications , Kidney Failure, Chronic/surgery , Kidney Transplantation/methods , Postoperative Complications/epidemiology , Registries , Societies, Medical , Transplant Recipients , Aged , Female , Frailty/epidemiology , Humans , Incidence , Kidney Failure, Chronic/complications , Kidney Failure, Chronic/epidemiology , Male , Middle Aged , Prospective Studies , Risk Factors , United States/epidemiology
19.
AJOB Empir Bioeth ; 11(1): 40-52, 2020.
Article in English | MEDLINE | ID: mdl-31618112

ABSTRACT

Background: With growing transplant wait times, clinical trials are evaluating the safety and efficacy of transplanting HCV-infected donor (HCV+) organs into HCV-noninfected recipients (HCV D+/R-). Such transplants raise ethical questions about safety, consent, and access to organs. Methods: We interviewed eight of the ten total HCV D+/R- transplant recipients enrolled in a pilot clinical trial examining the safety and feasibility of these novel transplants regarding their experiences in the trial, including their decision-making and perceptions of the informed consent process. Results: All interviewees reported positive experiences and expressed confidence regarding their decision to participate. Participants accepted an HCV + organ based on their assessments of the risks and potential benefits of HCV D+/R- transplants. For many, the risks of HCV were minimal compared to the risks of not receiving a transplant. All participants recalled providing informed consent, reporting that the process was thorough and that all their questions were addressed. Participants did not regret receiving an HCV D+/R- transplant and did not report experiencing stigma. However, given their understanding of HCV cure rates in the general population and the survival benefit associated with kidney transplantation, participants may have conflated research regarding HCV D+/R- transplantation with clinical care, suggesting a potential therapeutic misconception. Conclusions: Recipients of experimental HCV D+/R- transplants generally seemed to recognize the risks and benefits of these novel transplants and did not regret participating. Such salutary reported experiences are important in assessing the appropriateness of further research into the feasibility of HCV D+/R- transplants.


Subject(s)
Hepatitis C/etiology , Kidney Transplantation/ethics , Therapies, Investigational/ethics , Transplant Recipients/psychology , Aged , Decision Making/ethics , Female , Hepacivirus , Humans , Informed Consent/ethics , Male , Pilot Projects , Qualitative Research , Risk Assessment , Therapeutic Misconception , United States/epidemiology
20.
Clin Transplant ; 33(8): e13637, 2019 08.
Article in English | MEDLINE | ID: mdl-31194892

ABSTRACT

BACKGROUND: United States transplant centers are required to report follow-up data for living kidney donors for 2 years post-donation. However, living kidney donor (LKD) follow-up is often incomplete. Mobile health (mHealth) technologies could ease data collection burden but have not yet been explored in this context. METHODS: We conducted semi-structured in-depth interviews with a convenience sample of 21 transplant providers and thought leaders about challenges in LKD follow-up, and the potential role of mHealth in overcoming these challenges. RESULTS: Participants reported challenges conveying the importance of follow-up to LKDs, limited data from international/out-of-town LKDs, and inadequate staffing. They believed the 2-year requirement was insufficient, but expressed difficulty engaging LKDs for even this short time and inadequate resources for longer-term follow-up. Participants believed an mHealth system for post-donation follow-up could benefit LKDs (by simplifying communication/tasks and improving donor engagement) and transplant centers (by streamlining communication and decreasing workforce burden). Concerns included cost, learning curves, security/privacy, patient language/socioeconomic barriers, and older donor comfort with mHealth technology. CONCLUSIONS: Transplant providers felt that mHealth technology could improve LKD follow-up and help centers meet reporting thresholds. However, designing a secure, easy to use, and cost-effective system remains challenging.


Subject(s)
Delivery of Health Care/organization & administration , Health Personnel/statistics & numerical data , Health Plan Implementation , Kidney Transplantation/methods , Living Donors/supply & distribution , Telemedicine/organization & administration , Telemedicine/standards , Delivery of Health Care/standards , Follow-Up Studies , Humans , Interviews as Topic , Nephrectomy/methods , Tissue and Organ Procurement/methods
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