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Racial differences in completion of the living kidney donor evaluation process

Kumar, Komal; Tonascia, James M; Muzaale, Abimereki D; Purnell, Tanjala S; Ottmann, Shane E; Al Ammary, Fawaz; Bowring, Mary G; Poon, Anna; King, Elizabeth A; Massie, Allan B; Chow, Eric K H; Thomas, Alvin G; Ying, Hao; Borja, Marvin; Konel, Jonathan M; Henderson, Macey; Cameron, Andrew M; Garonzik-Wang, Jacqueline M; Segev, Dorry L
Racial disparities in living donor kidney transplantation (LDKT) persist but the most effective target to eliminate these disparities remains unknown. One potential target could be delays during completion of the live donor evaluation process. We studied racial differences in progression through the evaluation process for 247 African American (AA) and 664 non-AA living donor candidates at our center between January 2011 and March 2015. AA candidates were more likely to be obese (38% vs 22%: P < .001), biologically related (66% vs 44%: P < .001), and live ≤50 miles from the center (64% vs 37%: P < .001) than non-AAs. Even after adjusting for these differences, AAs were less likely to progress from referral to donation (aHR for AA vs non-AA: 0.26 0.47 0.83; P = .01). We then assessed racial differences in completion of each step of the evaluation process and found disparities in progression from medical screening to in-person evaluation (aHR: 0.41 0.620.94; P = .02) and from clearance to donation (aHR: 0.28 0.510.91; P = .02), compared with from referral to medical screening (aHR: 0.78 1.021.33; P = .95) and from in-person evaluation to clearance (aHR: 0.59 0.931.44; P = .54). Delays may be a manifestation of the transplant candidate's social network, thus, targeted efforts to optimize networks for identification of donor candidates may help address LDKT disparities.
PMCID:6398948
PMID: 29791039
ISSN: 1399-0012
CID: 5128702

Landscape of Living Multiorgan Donation in the United States: A Registry-Based Cohort Study

Henderson, Macey L; DiBrito, Sandra R; Thomas, Alvin G; Holscher, Courtenay M; Shaffer, Ashton A; Bowring, Mary Grace; Purnell, Tanjala S; Massie, Allan B; Garonzik-Wang, Jacqueline M; Waldram, Madeleine M; Lentine, Krista L; Segev, Dorry L
BACKGROUND:The donation of multiple allografts from a single living donor is a rare practice, and the patient characteristics and outcomes associated with these procedures are not well described. METHODS:Using the Scientific Registry of Transplant Recipients, we identified 101 living multiorgan donors and their 133 recipients. RESULTS:The 49 sequential (donations during separate procedures) multiorgan donors provided grafts to 81 recipients: 21 kidney-then-liver, 15 liver-then-kidney, 5 lung-then-kidney, 3 liver-then-intestine, 3 kidney-then-pancreas, 1 lung-then-liver, and 1 pancreas-then-kidney. Of these donors, 38% donated 2 grafts to the same recipient and 15% donated 2 grafts as non-directed donors. Compared to recipients from first-time, single organ living donors, recipients from second-time living donors had similar graft and patient survival. The 52 simultaneous (multiple donations during one procedure) multiorgan donors provided 2 grafts to 1 recipient each: 48 kidney-pancreas and 4 liver-intestine. Donors had median of 13.4 years (interquartile range, 8.3-18.5 years) of follow-up. There was one reported death of a sequential donor (2.5 years after second donation). Few postdonation complications were reported over a median of 116 days (interquartile range, 0-295 days) of follow-up; however, routine living donor follow-up data were sparse. Recipients of kidneys from second-time living donors had similar graft (P = 0.2) and patient survival (P = 0.4) when compared with recipients from first-time living donors. Similarly, recipients of livers from second-time living donors had similar graft survival (P = 0.9) and patient survival (P = 0.7) when compared with recipients from first-time living donors. CONCLUSIONS:Careful documentation of outcomes is needed to ensure ethical practices in selection, informed consent, and postdonation care of this unique donor community.
PMCID:6029711
PMID: 29952925
ISSN: 1534-6080
CID: 5128802

Interviews of living kidney donors to assess donation-related concerns and information-gathering practices

Ruck, Jessica M; Van Pilsum Rasmussen, Sarah E; Henderson, Macey L; Massie, Allan B; Segev, Dorry L
BACKGROUND:Efforts are underway to improve living kidney donor (LKD) education, but current LKD concerns and information-gathering preferences have not been ascertained to inform evidence-based resource development. As a result, prior studies have found that donors desire information that is not included in current informed consent and/or educational materials. METHODS:We conducted semi-structured interviews with 50 LKDs who donated at our center to assess (1) concerns about donation that they either had personally before or after donation or heard from family members or friends, (2) information that they had desired before donation, and (3) where they sought information about donation. We used thematic analysis of verbatim interview transcriptions to identify donation-related concerns. We compared the demographic characteristics of participants reporting specific concerns using Fisher's exact test. RESULTS:We identified 19 unique concerns that participants had or heard about living kidney donation. 20% of participants reported having had no pre-donation concerns; 38% reported no post-donation concerns. The most common concern pre-donation was future kidney failure (22%), post-donation was the recovery process (24%), and from family was endangering their family unit (16%). 44% of participants reported being less concerned than family. 26% of participants wished they had had additional information prior to donating, including practical advice for recovery (10%) and information about specific complications (14%). Caucasian participants were more likely to hear at least one concern from family (76% vs. 33%, p = 0.02). The most commonly consulted educational resources were health care providers (100%) and websites (79% of donors since 2000). 26% of participants had had contact with other donors; an additional 20% desired contact with other LKDs. CONCLUSIONS:Potential donors not only have personal donation-related concerns but frequently hear donation-related concerns from family members and friends. Current gaps in donor education include an absence of practical, peer-to-peer advice about donation from other prior donors and materials directed and potential donors' family members and friends. These findings can inform the development of new educational practices and resources targeted not only at LKDs but at their social networks.
PMCID:5994029
PMID: 29884126
ISSN: 1471-2369
CID: 5128732

Should Trauma Physicians Treat a Severely Injured Patient for the Sake of Elucidating Preferences about Organ Donation?

DiBrito, Sandra R; Henderson, Macey L
Organ donation potential is not a motivator of care in the trauma bay, and it is ethically problematic to consider organ donor potential during the active resuscitation of a trauma patient. Despite organ donation being a public good, the role of the trauma physician is to maintain focus on the patient as an individual and to respect a patient's right to life and autonomy. This tenet of medicine is the foundation of the trust that a community and individuals must have in order for the health care system to function. Fortunately, there are guidelines and systems in place to allow physicians to care for the patient in front of them while simultaneously making morally sound decisions regarding donation in the setting of the current organ shortage.
PMID: 29763391
ISSN: 2376-6980
CID: 5480542

Expanding the Facebook Platform to Engage and Educate Online Communities

Mogul, Douglas B; Henderson, Macey L; Bridges, John F P
PMID: 29206814
ISSN: 1572-0241
CID: 5480532

Factors associated with perceived donation-related financial burden among living kidney donors

Ruck, Jessica M; Holscher, Courtenay M; Purnell, Tanjala S; Massie, Allan B; Henderson, Macey L; Segev, Dorry L
The perception of living kidney donation-related financial burden affects willingness to donate and the experience of donation, yet no existing tools identify donors who are at higher risk of perceived financial burden. We sought to identify characteristics that predicted higher risk of perceived financial burden. We surveyed 51 living kidney donors (LKDs) who donated from 01/2015 to 3/2016 about socioeconomic characteristics, predonation cost concerns, and perceived financial burden. We tested associations between both self-reported and ZIP code-level characteristics and perceived burden using Fisher's exact test and bivariate modified Poisson regression. Donors who perceived donation-related financial burden were less likely to have an income above their ZIP code median (14% vs. 72%, P = .006); however, they were more likely than donors who did not perceive burden to rent their home (57% vs. 16%, P = .03), have an income <$60 000 (86% vs. 20%, P = .002), or have had predonation cost concerns (43% vs. 7%, P = .03). Perceived financial burden was 3.6-fold as likely among those with predonation cost concerns and 10.6-fold as likely for those with incomes <$60 000. Collecting socioeconomic characteristics and asking about donation-related cost concerns prior to donation might allow transplant centers to target financial support interventions toward potential donors at higher risk of perceiving donation-related financial burden.
PMCID:5863761
PMID: 29068176
ISSN: 1600-6143
CID: 5128362

Social Media in the Identification of Living Kidney Donors: Platforms, Tools, and Strategies

Henderson, Macey L
PURPOSE OF REVIEW/OBJECTIVE:Living donor transplantation offers patients with end-stage renal disease faster access to transplant and better survival and quality of life than waiting for a deceased donor or remaining on dialysis. While many people state they would be willing to help someone in need through kidney donation, there are education and communication barriers to donor candidate identification. These barriers might be mitigated by technological innovations, including the use of social media. RECENT FINDINGS/RESULTS:This article describes the state of contemporary evidence regarding use of social media tools and interventions to increase access to living donor transplantation, as reported in peer-reviewed medical literature, as well as programs that have not yet been formally evaluated. SUMMARY/CONCLUSIONS:As social media platforms continue to grow and expand, a commitment to understanding and facilitating the use of social media by the transplant community may support patients who are interested in using social media as a tool to find a living kidney donor.
PMCID:5963285
PMID: 29805956
ISSN: 2196-3029
CID: 5480552

Strategies for Increasing Knowledge, Communication, and Access to Living Donor Transplantation: an Evidence Review to Inform Patient Education

Hunt, Heather F; Rodrigue, James R; Dew, Mary Amanda; Schaffer, Randolph L; Henderson, Macey L; Bloom, Randee; Kacani, Patrick; Shim, Pono; Bolton, Lee; Sanchez, William; Lentine, Krista L
PURPOSE OF REVIEW/OBJECTIVE:Inadequate knowledge of the benefits, risks and opportunities for living donation is an important, potentially modifiable barrier to living donor transplantation. We assessed the current state of the evidence regarding strategies to increase knowledge, communication and access to living donor transplantation, as reported in peer-reviewed medical literature. RECENT FINDINGS/RESULTS:Nineteen studies were reviewed, categorized as programs evaluated in randomized controlled trials (8 studies) and programs supported by observational (non-randomized) studies (11 studies). Content extraction demonstrated that comprehensive education about living donation and living donor transplantation involves multiple learners - the transplant candidate, potential living donors, and social support networks - and requires communicating complex information about the risks and benefits of donation, transplantation and alternative therapies to these different audiences. Transplant centers can help transplant patients learn about living donor transplantation through a variety of formats and modalities, including center-based, home-based and remote technology-based education, outreach to dialysis centers, and social media. Evaluation of these strategies and program themes informed a new Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) public education brochure. SUMMARY/CONCLUSIONS:Increasing transplant candidate knowledge and comfort in talking about living donation and transplantation can reduce educational barriers to pursuit of living donor transplants. Ongoing efforts are needed to develop, refine and disseminate educational programs to help improve transplant access for more patients in need of organ donors.
PMCID:6413325
PMID: 30873335
ISSN: 2196-3029
CID: 5480562

Electronic messaging and communication with living kidney donors

Ruck, Jessica M; Zhou, Sheng; Thomas, Alvin G; Cramm, Shannon L; Massie, Allan B; Montgomery, John R; Berger, Jonathan C; Henderson, Macey L; Segev, Dorry L
New regulations require living kidney donor (LKD) follow-up for 2 years, but donor retention remains poor. Electronic communication (eg, text messaging and e-mail) might improve donor retention. To explore the possible impact of electronic communication, we recruited LKDs to participate in an exploratory study of communication via telephone, e-mail, or text messaging postdonation; communication through this study was purely optional and did not replace standard follow-up. Of 69 LKDs recruited, 3% requested telephone call, 52% e-mail, and 45% text messaging. Telephone response rate was 0%; these LKDs were subsequently excluded from analysis. Overall response rates with e-mail or text messaging at 1 week, 1 month, 6 months, 1 year, and 2 years were 94%, 87%, 81%, 72%, and 72%. Lower response rates were seen in African Americans, even after adjusting for age, sex, and contact method (incidence rate ratio (IRR) nonresponse 2.07 5.8116.36 , P = .001). Text messaging had higher response rates than e-mail (IRR nonresponse 0.11 0.280.71 , P = .007). Rates of nonresponse were similar by sex (IRR 0.68, P = .4) and age (IRR 1.00, P > .9). In summary, LKDs strongly preferred electronic messaging over telephone and were highly responsive 2 years postdonation, even in this nonrequired, nonincentivized exploratory research study. These electronic communication tools can be automated and may improve regulatory compliance and postdonation care.
PMCID:6116553
PMID: 29281129
ISSN: 1399-0012
CID: 4301712

Association of Race and Ethnicity With Live Donor Kidney Transplantation in the United States From 1995 to 2014

Purnell, Tanjala S; Luo, Xun; Cooper, Lisa A; Massie, Allan B; Kucirka, Lauren M; Henderson, Macey L; Gordon, Elisa J; Crews, Deidra C; Boulware, L Ebony; Segev, Dorry L
Importance:Over the past 2 decades, there has been increased attention and effort to reduce disparities in live donor kidney transplantation (LDKT) for black, Hispanic, and Asian patients with end-stage kidney disease. The goal of this study was to investigate whether these efforts have been successful. Objective:To estimate changes over time in racial/ethnic disparities in LDKT in the United States, accounting for differences in death and deceased donor kidney transplantation. Design, Setting, and Participants:A secondary analysis of a prospectively maintained cohort study conducted in the United States of 453 162 adult first-time kidney transplantation candidates included in the Scientific Registry of Transplant Recipients between January 1, 1995, and December 31, 2014, with follow-up through December 31, 2016. Exposures:Race/ethnicity. Main Outcomes and Measures:The primary study outcome was time to LDKT. Multivariable Cox proportional hazards and competing risk models were constructed to assess changes in racial/ethnic disparities in LDKT among adults on the deceased donor kidney transplantation waiting list and interaction terms were used to test the statistical significance of temporal changes in racial/ethnic differences in receipt of LDKT. The adjusted subhazard ratios are estimates derived from the multivariable competing risk models. Data were categorized into 5-year increments (1995-1999, 2000-2004, 2005-2009, 2010-2014) to allow for an adequate sample size in each analytical cell. Results:Among 453 162 adult kidney transplantation candidates (mean [SD] age, 50.9 [13.1] years; 39% were women; 48% were white; 30%, black; 16%, Hispanic; and 6%, Asian), 59 516 (13.1%) received LDKT. Overall, there were 39 509 LDKTs among white patients, 8926 among black patients, 8357 among Hispanic patients, and 2724 among Asian patients. In 1995, the cumulative incidence of LDKT at 2 years after appearing on the waiting list was 7.0% among white patients, 3.4% among black patients, 6.8% among Hispanic patients, and 5.1% among Asian patients. In 2014, the cumulative incidence of LDKT was 11.4% among white patients, 2.9% among black patients, 5.9% among Hispanic patients, and 5.6% among Asian patients. From 1995-1999 to 2010-2014, racial/ethnic disparities in the receipt of LDKT increased (P < .001 for all statistical interaction terms in adjusted models comparing white patients vs black, Hispanic, and Asian patients). In 1995-1999, compared with receipt of LDKT among white patients, the adjusted subhazard ratio was 0.45 (95% CI, 0.42-0.48) among black patients, 0.83 (95% CI, 0.77-0.88) among Hispanic patients, and 0.56 (95% CI, 0.50-0.63) among Asian patients. In 2010-2014, compared with receipt of LDKT among white patients, the adjusted subhazard ratio was 0.27 (95% CI, 0.26-0.28) among black patients, 0.52 (95% CI, 0.50-0.54) among Hispanic patients, and 0.42 (95% CI, 0.39-0.45) among Asian patients. Conclusions and Relevance:Among adult first-time kidney transplantation candidates in the United States who were added to the deceased donor kidney transplantation waiting list between 1995 and 2014, disparities in the receipt of live donor kidney transplantation increased from 1995-1999 to 2010-2014. These findings suggest that national strategies for addressing disparities in receipt of live donor kidney transplantation should be revisited.
PMID: 29297077
ISSN: 1538-3598
CID: 5128432