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Public education materials about Vascular Composite Allotransplantation and donation in the United States: Current scope and limitations

Van Pilsum Rasmussen, Sarah E; Uriarte, Jefferson; Anderson, Naomi; Doby, Brianna; Ferzola, Alexander; Sung, Hannah; Cooney, Carisa; Brandacher, Gerald; Gordon, Elisa; Segev, Dorry L; Henderson, Macey L
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.
PMID: 32810365
ISSN: 1399-0012
CID: 5126622

Kidney Dyads: Caregiver Burden and Relationship Strain Among Partners of Dialysis and Transplant Patients

Van Pilsum Rasmussen, Sarah E; Eno, Ann; Bowring, Mary G; Lifshitz, Romi; Garonzik-Wang, Jacqueline M; Al Ammary, Fawaz; Brennan, Daniel C; Massie, Allan B; Segev, Dorry L; Henderson, Macey L
Background/UNASSIGNED: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/UNASSIGNED: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/UNASSIGNED: = 0.3). Conclusions/UNASSIGNED: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.
PMCID:7339348
PMID: 32766421
ISSN: 2373-8731
CID: 5126582

Psychosocial factors and medication adherence among recipients of vascularized composite allografts

Van Pilsum Rasmussen, Sarah E; Ferzola, Alexander; Cooney, Carisa M; Shores, Jaime T; Lee, Wp Andrew; Goldman, Emily; Kaufman, Christina L; Brandacher, Gerald; Segev, Dorry L; Henderson, Macey L
Objectives/UNASSIGNED: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/UNASSIGNED:, 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/UNASSIGNED: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/UNASSIGNED:These findings lay the groundwork for future assessments of the role psychosocial factors play in facilitating medication adherence and broader transplant outcomes.
PMCID:7350038
PMID: 32695395
ISSN: 2050-3121
CID: 5126532

The first increase in live kidney donation in the United States in 15 years

Al Ammary, Fawaz; Yu, Yifan; Ferzola, Alexander; Motter, Jennifer D; Massie, Allan B; Yu, Sile; Thomas, Alvin G; Crews, Deidra C; Segev, Dorry L; Muzaale, Abimereki D; Henderson, Macey L
The first sustained increase in live kidney donation in the United States in 15 years was observed from 2017 to 2019. To help sustain this surge, we studied 35 900 donors (70.3% white, 14.5% Hispanic, 9.3% black, 4.4% Asian) to understand the increase in 2017-2019 vs 2014-2016 using Poisson regression. Among biologically related donors aged <35, 35-49, and ≥50 years, the number of donors did not change across race/ethnicity but increased by 38% and 29% for Hispanic and black ≥50. Among unrelated donors <35, 35-49, and ≥50, white donors increased by 18%, 14%, and 27%; Hispanic donors <35 did not change but increased by 22% and 35% for 35-49 and ≥50; black donors <35 declined by 23% and did not change for 35-49 and ≥50; Asian donors did not change. Among kidney paired donors <35, 35-49, and ≥50, white donors increased by 42%, 50%, and 68%; Hispanic donors <35 and 35-49 increased by 36% and 55% and did not change for ≥50; black donors did not change; Asian donors <35 did not change but increased by 107% and 82% for 35-49 and ≥50. The increase in donation was driven predominantly by unrelated and paired white donors. Donation among unrelated black individuals should be promoted.
PMCID:8717834
PMID: 32524764
ISSN: 1600-6143
CID: 5126452

Brief Report: Willingness to Accept HIV-Infected and Increased Infectious Risk Donor Organs Among Transplant Candidates Living With HIV

Seaman, Shanti M; Van Pilsum Rasmussen, Sarah E; Nguyen, Anh Q; Halpern, Samantha E; You, Susan; Waldram, Madeleine M; Anjum, Saad K; Bowring, Mary Grace; Muzaale, Abimereki D; Ostrander, Darin B; Brown, Diane; Massie, Allan B; Tobian, Aaron A R; Henderson, Macey L; Fletcher, Faith E; Smith, Burke; Chao, Ada; Gorupati, Nishita; Prakash, Katya; Aslam, Saima; Lee, Dong H; Kirchner, Varvara; Pruett, Timothy L; Haidar, Ghady; Hughes, Kailey; Malinis, Maricar; Trinh, Sonya; Segev, Dorry L; Sugarman, Jeremy; Durand, Christine M
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.
PMCID:7429320
PMID: 32427721
ISSN: 1944-7884
CID: 5126352

Long-term renal function in living kidney donors with simple renal cysts: A retrospective cohort study

Waldram, Madeleine M; Thomas, Alvin G; Yu, Yifan; Holscher, Courtenay M; Nguyen, Anh Q; Halpern, Samantha E; Ottman, Shane; Muzaale, Abimereki D; Henderson, Macey L; Lentine, Krista L; Al Ammary, Fawaz; Brennan, Daniel C; Garonzik-Wang, Jacqueline M; Segev, Dorry L; Massie, Allan B
Simple (Bosniak I) renal cysts are considered acceptable in living kidney donor selection in terms of cancer risk. However, they tend to increase in number and size over time and might compromise renal function in donors. To clarify their implications for long-term renal function, we characterized the prevalence of renal cysts in 454 individuals who donated at our center from 2000 to 2007. We estimated the association between the presence of cysts in the kidney remaining after nephrectomy (ie, retained cysts) and postdonation eGFR trajectory using mixed-effects linear regression. Donors with retained cysts (N = 86) were older (P < .001) and had slightly lower predonation eGFR (median 94 vs 98 mL/min/1.73 m2 , P < .01) than those without cysts. Over a median 7.8 years, donors with retained cysts had lower baseline eGFR (-8.7 -5.6 -2.3  mL/min/1.73 m2 , P < .01) but similar yearly change in eGFR (-0.4 0.02 0.4  mL/min/1.73 m2 , P = .2) compared to those without retained cysts. Adjusting for predonation characteristics, there was no difference in baseline eGFR (P = .6) or yearly change in eGFR (P > .9). There continued to be no evidence of an association when we considered retained cyst(s) ≥10 mm or multiple retained cysts (all P > .05). These findings reaffirm current practices of accepting candidates with simple renal cysts for donor nephrectomy.
PMID: 32399996
ISSN: 1399-0012
CID: 5126342

Association of Early Postdonation Renal Function With Subsequent Risk of End-Stage Renal Disease in Living Kidney Donors

Massie, Allan B; Holscher, Courtenay M; Henderson, Macey L; Fahmy, Lara M; Thomas, Alvin G; Al Ammary, Fawaz; Getsin, Samantha N; Snyder, Jon J; Lentine, Krista L; Garg, Amit X; Segev, Dorry L
Importance:Living kidney donation is associated with increased long-term risk of end-stage renal disease (ESRD). An early postdonation marker of ESRD risk could improve postdonation risk assessment and counseling for kidney donors and allow early intervention for donors at increased risk. Objective:To determine the association between renal function in the first 6 months postdonation and subsequent risk of ESRD in kidney donors. Design, Setting, and Participants:This secondary analysis of a prospective national cohort uses a population-based registry of all living kidney donors in the United States between October 26, 1999, and January 1, 2018, with follow-up through December 31, 2018. All kidney donors who had donated in the date range and had serum creatinine measured at 6 months (±3 months) postdonation were included. Exposures:Renal function as measured by estimated glomerular filtration rate 6 months after donation (eGFR6). Main Outcomes and Measures:End-stage renal disease, ascertained via linkage to Centers for Medicare & Medicaid Services data. Results:A total of 71 468 living kidney donors were included (of 109 065 total donors over this period). Their median (interquartile range) eGFR6 was 63 (54-74) mL/min/1.73 m2. Cumulative incidence of ESRD at 15 years postdonation ranged from 11.7 donors per 10 000 donors with eGFR6 values greater than 70 mL/min/1.73 m2 to 33.1 donors per 10 000 donors with eGFR6 values of 50 mL/min/1.73 m2 or less. Adjusting for age, race, sex, body mass index, and biological relationship, every 10 mL/min/1.73 m2 reduction in eGFR6 was associated with a 28% increased risk of ESRD (adjusted hazard ratio, 1.28 [95% CI, 1.06-1.54]; P = .009). The association between predonation eGFR and ESRD was not significant and was fully mediated by eGFR6 (adjusted hazard ratio, 1.00 [95% CI, 0.86-1.17]; P = .97). The postdonation eGFR value was a better marker of ESRD than eGFR decline after donation or the ratio of eGFR6 to predonation eGFR, as determined by the Akaike information criterion (in which a lower value indicates a better model fit; eGFR6, 1495.61; predonation eGFR - eGFR6, 1503.58; eGFR6 / predonation eGFR, 1502.30). Conclusions and Relevance:In this study, there was an independent association of eGFR6 with subsequent ESRD risk in living kidney donors, even after adjusting for predonation characteristics. The findings support measurement of early postdonation serum creatinine monitoring in living kidney donors, and the use of these data to help identify donors who might need more careful surveillance and early intervention.
PMID: 31968070
ISSN: 2168-6262
CID: 5126112

Donor-Recipient Relationship and Risk of ESKD in Live Kidney Donors of Varied Racial Groups

Muzaale, Abimereki D; Massie, Allan B; Al Ammary, Fawaz; Henderson, Macey L; Purnell, Tanjala S; Holscher, Courtenay M; Garonzik-Wang, Jacqueline; Locke, Jayme E; Snyder, Jon J; Lentine, Krista L; Segev, Dorry L
RATIONALE & OBJECTIVE:Risk factors for kidney failure are the basis of live kidney donor candidate evaluation. We quantified risk for end-stage kidney disease (ESKD) by the biological relationship of the donor to the recipient, a risk factor that is not addressed by current clinical practice guidelines. STUDY DESIGN:Retrospective cohort study. SETTING & PARTICIPANTS:A cohort of 143,750 US kidney donors between 1987 and 2017. EXPOSURE:Biological relationship of donor and recipient. OUTCOME:ESKD. Donors' records were linked to national dialysis and transplantation registries to ascertain development of the outcome. ANALYTIC APPROACH:Donors were observed over a median of 12 (interquartile range, 6-18; maximum, 30) years. Survival analysis methods that account for the competing risk for death were used. RESULTS:Risk for ESKD varied by orders of magnitude across donor-recipient relationship categories. For Asian donors, risks compared with unrelated donors were 259.4-fold greater for identical twins (95% CI, 19.5-3445.6), 4.7-fold greater for full siblings (95% CI, 0.5-41.0), 3.5-fold greater for offspring (95% CI, 0.6-39.5), 1.0 for parents, and 1.0 for half-sibling or other biological relatives. For black donors, risks were 22.5-fold greater for identical twin donors (95% CI, 4.7-107.0), 4.1-fold for full siblings (95% CI, 2.1-7.8), 2.7-fold for offspring (95% CI, 1.4-5.4), 3.1-fold for parents (95% CI, 1.4-6.8), and 1.3-fold for half-sibling or other biological relatives (95% CI, 0.5-3.3). For white donors, risks were 3.5-fold greater for identical twin donors (95% CI, 0.5-25.3), 2.0-fold for full siblings (95% CI, 1.4-2.8), 1.4-fold for offspring (95% CI, 0.9-2.3), 2.9-fold for parents (95% CI, 2.0-4.1), and 0.8-fold for half-sibling or other biological relatives (95% CI, 0.3-1.6). LIMITATIONS:Insufficient sample size in some race and relationship groups. Absence of data for family history of kidney disease for donors biologically unrelated to their recipients. CONCLUSIONS:Marked differences in risk for ESKD across types of donor-recipient relationship were observed for Asian, black, and white donors. These findings warrant further validation with more robust data to better inform clinical practice guidelines.
PMID: 31732232
ISSN: 1523-6838
CID: 5129742

Visual Abstracts (#VisualAbstract): A New Journal Initiative to Disseminate Research [Editorial]

Henderson, Macey; Baan, Carla; Chapman, Jeremy
PMID: 31343562
ISSN: 1534-6080
CID: 5480462

The landscape of vascularized composite allograft donation in the United States

Henderson, Macey L
PURPOSE OF REVIEW:Vascularized composite allograft (VCA) donation and transplantation has now demonstrated feasibility and impact to the lives of patients suffering from devastating and traumatic injury. This review summarizes the current landscape of VCA donation in the United States. RECENT FINDINGS:VCA donations are nonlife-saving allografts, for nonlife-saving transplants - and therefore, conservative donor selection focused on the optimization of donors for the lowest risk to transplant recipients is paramount. VCA donors in the United States are a demographically and clinically diverse group that largely reflects the characteristics of the VCA candidates waiting for transplants. Public opinion about VCA donation is generally supportive, but has lower support for VCA transplants than for solid organ transplants. SUMMARY:As an emerging area of transplantation, VCA donation is evolving in the United States with growing interest by the public, and those suffering from catastrophic injury for which reconstructive transplantation may offer excellent outcomes and a high quality of life.
PMCID:7571463
PMID: 31577595
ISSN: 1531-7013
CID: 5480472