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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
Addressing Racial Disparities in Live Donor Kidney Transplantation Through Education and Advocacy Training
King, Elizabeth A; Ruck, Jessica M; Garonzik-Wang, Jacqueline; Bowring, Mary G; Kumar, Komal; Purnell, Tanjala; Cameron, Andrew; Segev, Dorry L
Background/UNASSIGNED:The Live Donor Champion (LDC) program trains kidney transplant (KT) candidates and their family/friends ("champions") as educator-advocates for live donor KT (LDKT). This program was created to empower patients and champions, particularly African American (AA) waitlist candidates that historically had lower access to LDKT. We assessed changes in knowledge about and comfort discussing live donation and donor referral associated with LDC participation, both overall and by participant race. Methods/UNASSIGNED:We compared 163 adult KT candidates who were LDC participants from October 2013 to May 2016 with 489 matched controls, both overall and by race. We compared changes in comfort and knowledge post-LDC using rank-sum tests among participants by race. We compared time to first live donor referral for participants versus controls, by race, using Cox regression. Results/UNASSIGNED: < 0.001); the impact of LDC participation was similar among non-AAs and AAs (p-interaction = 0.6). Conclusions/UNASSIGNED:The LDC program increased knowledge, comfort, and live donor referral for non-AA and AA participants, underscoring the effectiveness in the program in promoting LDKT in a population with historically lower access to LDKT.
PMCID:7423916
PMID: 32851126
ISSN: 2373-8731
CID: 5126632
National Trends in the Association of Race and Ethnicity With Predialysis Nephrology Care in the United States From 2005 to 2015
Purnell, Tanjala S; Bae, Sunjae; Luo, Xun; Johnson, Morgan; Crews, Deidra C; Cooper, Lisa A; Henderson, Macey L; Greer, Raquel C; Rosas, Sylvia E; Boulware, L Ebony; Segev, Dorry L
Importance:Predialysis nephrology care is associated with better survival among patients with end-stage kidney disease. Objective:To examine national trends in racial/ethnic disparities in receipt of predialysis nephrology care at least 1 year before dialysis initiation in the United States from 2005 to 2015. Design, Setting, and Participants:This national registry study assessed US registry data of 1 000 390 adults in the US Renal Data System who initiated maintenance dialysis treatment from January 1, 2005, to December 31, 2015, in multiple cross-sectional analyses. Multivariable logistic regression models were used to examine national trends in racial/ethnic disparities in receipt of predialysis nephrology care with adjustments for potential confounders. Data were analyzed April 17, 2020. Exposure:Race/ethnicity of the patients. Main Outcomes and Measures:Receipt of at least 12 months of predialysis nephrology care as determined by clinician-based documentation on the End Stage Renal Disease Medical Evidence Report Form CMS 2728. Results:Among 1 000 390 adults (57.2% male; 54.6% White, 27.8% Black, 14.0% Hispanic, and 3.6% Asian; mean [SD] age, 62.4 [15.6] years) who initiated maintenance dialysis in the United States from 2005 to 2015, 310 743 (31.1%) received at least 12 months of predialysis nephrology care. In 2005 to 2007, compared with White adults, the adjusted odds ratio for receipt of at least 12 months of predialysis nephrology care was 0.82 (95% CI, 0.80-0.84) among Black adults, 0.67 (95% CI, 0.65-0.69) among Hispanic adults, and 0.84 (95% CI, 0.80-0.89) among Asian adults; in 2014 to 2015, the adjusted odds ratio was 0.76 (95% CI, 0.74-0.78) among Black adults, 0.61 (95% CI, 0.60-0.63) among Hispanic adults, and 0.90 (95% CI: 0.86-0.95) among Asian adults. Conclusions and Relevance:In this cross-sectional study of more than 1 million US adults with end-stage kidney disease, racial and ethnic disparities in predialysis nephrology care did not substantially improve from 2005 to 2015. Study findings suggest that national strategies to address racial/ethnic disparities in predialysis nephrology care are needed.
PMCID:7453308
PMID: 32852554
ISSN: 2574-3805
CID: 5126642
Impact of the COVID-19 pandemic on commercial airlines in the United States and implications for the kidney transplant community
Strauss, Alexandra T; Cartier, David; Gunning, Bruce A; Boyarsky, Brian J; Snyder, Jon; Segev, Dorry L; Roush, Michael; Massie, Allan B
Many deceased-donor and living-donor kidney transplants (KTs) rely on commercial airlines for transport. However, the coronavirus-19 pandemic has drastically impacted the commercial airline industry. To understand potential pandemic-related disruptions in the transportation network of kidneys across the United States, we used national flight data to compare scheduled flights during the pandemic vs 1-year earlier, focusing on Organ Procurement Organization (OPO) pairs between which kidneys historically most likely traveled by direct flight (High Volume by direct Air transport OPO Pairs, HVA-OPs). Across the United States, there were 39% fewer flights in April 2020 vs April 2019. Specific to the kidney transportation network, there were 65.1% fewer flights between HVA-OPs, with considerable OPO-level variation (interquartile range [IQR] 54.7%-75.3%; range 0%-100%). This translated to a drop in median number of flights between HVA-OPs from 112 flights/wk in April 2019 to 34 in April 2020 (PÂ <Â .001), and a rise in wait time between scheduled flights from 1.5Â hours in April 2019 (IQR 0.76-3.3) to 4.9Â hours in April 2020 (IQR 2.6-11.2; PÂ <Â .001). Fewer flights and longer wait times can impact logistics as well as cold ischemia time; our findings motivate an exploration of creative approaches to KT transport as the impact of this pandemic on the airline industry evolves.
PMID: 32860307
ISSN: 1600-6143
CID: 5126652
Interventions Made to Preserve Cognitive Function Trial (IMPCT) study protocol: a multi-dialysis center 2x2 factorial randomized controlled trial of intradialytic cognitive and exercise training to preserve cognitive function
McAdams-DeMarco, Mara A; Chu, Nadia M; Steckel, Malu; Kunwar, Sneha; González Fernández, MarlÃs; Carlson, Michelle C; Fine, Derek M; Appel, Lawrence J; Diener-West, Marie; Segev, Dorry L
BACKGROUND:Kidney disease and dialysis significantly impact cognitive function across the age spectrum. Cognitive training (CT) and/or exercise training (ET) are promising approaches to preserve cognitive function among community-dwelling older adults, but have not been tested for cognition preservation in hemodialysis patients of all ages. In this manuscript, we summarize the protocol for the Interventions Made to Preserve Cognitive Function Trial (IMPCT). METHODS:We will perform a 2 × 2 factorial randomized controlled trial (RCT) of eligible adult (≥18 years) hemodialysis initiates (n = 200) to test whether intradialytic CT (brain games on a tablet PC), ET (foot peddlers) and combined CT + ET while undergoing hemodialysis preserves executive function compared to standard of care (SC). Participants will engage in the interventions to which they are randomized for 6 months. The primary objective is to compare, among interventions, the 3-month change in executive function measured using the Trail Making Test A (TMTA) and B (TMTB); specifically, executive function is calculated as TMTB-TMTA to account for psychomotor speed. This primary outcome was selected based on findings from our pilot study. The secondary objectives are to compare the risk of secondary cognitive outcomes, ESKD-specific clinical outcomes, and patient-centered outcomes at 3-months and 6-months. All data collection and interventions are conducted in the dialysis center. DISCUSSION:We hypothesize that receiving intradialytic CT or ET will better preserve executive function than SC but receiving combined CT + ET, will be the most effective intervention. The current trial will be an important step in understanding how intradialytic interventions might preserve cognitive health. TRIAL REGISTRATION:Clinicaltrials.Gov (Date: 8/6/18): # NCT03616535 . Protocol Version: 10 (April 2020). FUNDING:NIDDK R01DK114074.
PMCID:7469421
PMID: 32883245
ISSN: 1471-2369
CID: 5126662
Eplet mismatches associated with de novo donor-specific HLA antibody in pediatric kidney transplant recipients
Charnaya, Olga; Jones, June; Philogene, Mary Carmelle; Chiang, Po-Yu; Segev, Dorry L; Massie, Allan B; Garonzik-Wang, Jacqueline
BACKGROUND:Optimizing amino acid (eplet) histocompatibility at first transplant decreases the risk of de novo donor-specific antibody (dnDSA) development and may improve long-term graft survival in pediatric kidney transplant recipients (KTR). We performed a retrospective analysis of pediatric KTR and their respective donors to identify eplets most commonly associated with dnDSA formation. METHODS:Eplet mismatch analysis was performed in a cohort of 125 pediatric KTR-donor pairs (2006-2018). We determined the prevalence of each eplet mismatch and quantified the percentage of exposed patients who developed dnDSA for each mismatched eplet. RESULTS:Recipient median age was 14 (IQR 8-17) years with a racial distribution of 42% Black, 48% Caucasian, and 5.6% Middle-Eastern. Median eplet load varied significantly by recipient race, Black 82 (IQR 58-98), White 60 (IQR 44-81) and Other 66 (IQR 61-76), p = 0.002. Forty-four percent of patients developed dnDSA after median 37.1 months. Compared to dnDSA- patients, dnDSA+ patients had higher median eplet load, 64 (IQR 46-83) vs. 77 (IQR 56-98), p = 0.012. The most common target of dnDSA were eplets expressed in HLA-A*11 and A2 in Class I, and HLA-DQ6 and DQA5 in Class II. The most commonly mismatched eplets were not the most likely to result in dnDSA formation. CONCLUSIONS:In a racially diverse population, only a subset of eplets was linked to antibody formation. Eplet load alone is not a sufficient surrogate for eplet immunogenicity. These findings illustrate the need to optimize precision in donor selection and allocation to improve long-term graft outcomes. Graphical Abstract A higher resolution version of the Graphical abstract is available as Supplementary information.
PMCID:8602732
PMID: 34100108
ISSN: 1432-198x
CID: 5127272
The Tangible Benefits of Living Donation: Results of a Qualitative Study of Living Kidney Donors
Van Pilsum Rasmussen, Sarah E; Robin, Miriam; Saha, Amrita; Eno, Anne; Lifshitz, Romi; Waldram, Madeleine M; Getsin, Samantha N; Chu, Nadia M; Al Ammary, Fawaz; Segev, Dorry L; Henderson, Macey L
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).
PMCID:7665258
PMID: 33204824
ISSN: 2373-8731
CID: 5126802
Interventions to Preserve Cognitive Functioning Among Older Kidney Transplant Recipients
Chu, Nadia M; Segev, Dorry; McAdams-DeMarco, Mara A
Purpose of Review/UNASSIGNED:To summarize the research on effective interventions for preserving cognitive function and prevent cognitive decline in patients with end-stage kidney disease (ESKD) who are undergoing dialysis and/or kidney transplantation (KT). Recent Findings/UNASSIGNED:Among ESKD patients undergoing hemodialysis, exercise training has been administered through home-based and intradialytic interventions. Additionally, one pilot study identified intradialytic cognitive training, electronic brain games, as an intervention to preserve cognitive function among patients undergoing hemodialysis. Fewer studies have investigated interventions to preserver cognitive function among KT recipients. To date, the only randomized controlled trial in this population identified B-vitamin supplements as an intervention to preserve cognitive function. The evidence from these trials support a short-term benefit of cognitive and exercise training as well as B-vitamin supplementation among patients with ESKD. Future studies should: 1) replicate these findings, 2) identify interventions specific to KT candidates, and 3) investigate the synergistic impact of both cognitive and exercise training. Summary/UNASSIGNED:Cognitive prehabilitation, with cognitive and/or exercise training, may be novel interventions for KT candidates that not only reduces delirium risk and long-term post-KT cognitive decline but also prevents dementia.
PMCID:7992368
PMID: 33777649
ISSN: 2196-3029
CID: 5127072
Financial incentives versus standard of care to improve patient compliance with live kidney donor follow-up: protocol for a multi-center, parallel-group randomized controlled trial
Levan, Macey L; Waldram, Madeleine M; DiBrito, Sandra R; Thomas, Alvin G; Al Ammary, Fawaz; Ottman, Shane; Bannon, Jaclyn; Brennan, Daniel C; Massie, Allan B; Scalea, Joseph; Barth, Rolf N; Segev, Dorry L; Garonzik-Wang, Jacqueline M
BACKGROUND:Live kidney donors (LKDs) account for nearly a third of kidney transplants in the United States. While donor nephrectomy poses minimal post-surgical risk, LKDs face an elevated adjusted risk of developing chronic diseases such as hypertension, diabetes, and end-stage renal disease. Routine screening presents an opportunity for the early detection and management of chronic conditions. Transplant hospital reporting requirements mandate the submission of laboratory and clinical data at 6-months, 1-year, and 2-years after kidney donation, but less than 50% of hospitals are able to comply. Strategies to increase patient engagement in follow-up efforts while minimizing administrative burden are needed. We seek to evaluate the effectiveness of using small financial incentives to promote patient compliance with LKD follow-up. METHODS/DESIGN:We are conducting a two-arm randomized controlled trial (RCT) of patients who undergo live donor nephrectomy at The Johns Hopkins Hospital Comprehensive Transplant Center (MDJH) and the University of Maryland Medical Center Transplant Center (MDUM). Eligible donors will be recruited in-person at their first post-surgical clinic visit or over the phone. We will use block randomization to assign LKDs to the intervention ($25 gift card at each follow-up visit) or control arm (current standard of care). Follow-up compliance will be tracked over time. The primary outcome will be complete (all components addressed) and timely (60 days before or after expected visit date), submission of LKD follow-up data at required 6-month, 1-year, and 2-year time points. The secondary outcome will be transplant hospital-level compliance with federal reporting requirements at each visit. Rates will be compared between the two arms following the intention-to-treat principle. DISCUSSION:Small financial incentivization might increase patient compliance in the context of LKD follow-up, without placing undue administrative burden on transplant providers. The findings of this RCT will inform potential center- and national-level initiatives to provide all LKDs with small financial incentives to promote engagement with post-donation monitoring efforts. TRIAL REGISTRATION:ClinicalTrials.gov number: NCT03090646 Date of registration: March 2, 2017 Sponsors: Johns Hopkins University, University of Maryland Medical Center Funding: The Living Legacy Foundation of Maryland.
PMCID:7654057
PMID: 33167882
ISSN: 1471-2369
CID: 5126782
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