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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
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
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
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%, PÂ =Â .006); however, they were more likely than donors who did not perceive burden to rent their home (57% vs. 16%, PÂ =Â .03), have an income <$60Â 000 (86% vs. 20%, PÂ =Â .002), or have had predonation cost concerns (43% vs. 7%, PÂ =Â .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 <$60Â 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
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
The first 9Â years of kidney paired donation through the National Kidney Registry: Characteristics of donors and recipients compared with National Live Donor Transplant Registries
Flechner, Stuart M; Thomas, Alvin G; Ronin, Matthew; Veale, Jeffrey L; Leeser, David B; Kapur, Sandip; Peipert, John D; Segev, Dorry L; Henderson, Macey L; Shaffer, Ashton A; Cooper, Matthew; Hil, Garet; Waterman, Amy D
The practice of kidney paired donation (KPD) is expanding annually, offering the opportunity for live donor kidney transplant to more patients. We sought to identify if voluntary KPD networks such as the National Kidney Registry (NKR) were selecting or attracting a narrower group of donors or recipients compared with national registries. For this purpose, we merged data from the NKR database with the Scientific Registry of Transplant Recipients (SRTR) database, from February 14, 2008, to February 14, 2017, encompassing the first 9Â years of the NKR. Compared with all United Network for Organ Sharing (UNOS) live donor transplant patients (49Â 610), all UNOS living unrelated transplant patients (23Â 319), and all other KPD transplant patients (4236), the demographic and clinical characteristics of NKR transplant patients (2037) appear similar to contemporary national trends. In particular, among the NKR patients, there were a significantly (PÂ <Â .001) greater number of retransplants (25.6% vs 11.5%), hyperimmunized recipients (22.7% vs 4.3% were cPRA >80%), female recipients (45.9% vs 37.6%), black recipients (18.2% vs 13%), and those on public insurance (49.7% vs 41.8%) compared with controls. These results support the need for greater sharing and larger pool sizes, perhaps enhanced by the entry of compatible pairs and even chains initiated by deceased donors, to unlock more opportunities for those harder-to-match pairs.
PMCID:6165704
PMID: 29603640
ISSN: 1600-6143
CID: 5128592
Perceptions, motivations, and concerns about living organ donation among people living with HIV
Van Pilsum Rasmussen, Sarah E; Henderson, Macey L; Bollinger, Juli; Seaman, Shanti; Brown, Diane; Durand, Christine M; Segev, Dorry L; Sugarman, Jeremy
Recent changes to United States law now permit people living with HIV (PLWH) to donate organs to HIV-infected (HIV+) recipients under research protocols. PLWH may have unique motivations for and concerns about living donation and understanding them is critical to ensuring the integrity of this novel approach to organ transplantation. We conducted in-depth interviews with PLWH from an urban HIV clinic who had previously indicated their willingness to be a living donor. Interviews elicited information on their motivations, perceived benefits, and concerns regarding living donation. Codes were identified inductively and then organized into themes and subthemes. Two coders independently analyzed the interviews and reconciled differences in coding by consensus. Thematic saturation was reached after 20 interviews. Motivations for living donation among PLWH included an altruistic desire to help others as well as HIV-specific motivations including solidarity with potential recipients and a desire to overcome HIV-related stigma. Perceived benefits of living donation included gratification from saving or improving the recipient's life and conferring a sense of normalcy for the HIV+ donor. Concerns about donation included the possibility of a prolonged recovery period, organ failure, and transmission of another strain of the virus to the recipients. PLWH had unique motivations, perceived benefits, and concerns about living donation in addition to those previously identified in the general population. These unique factors should be addressed in research protocols, informed consent processes, and the education and training of independent living donor advocates so that these endeavors are ethically sound.
PMCID:6206869
PMID: 29724118
ISSN: 1360-0451
CID: 5128662
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
Reported effects of the Scientific Registry of Transplant Recipients 5-tier rating system on US transplant centers: results of a national survey
Van Pilsum Rasmussen, Sarah E; Thomas, Alvin G; Garonzik-Wang, Jacqueline; Henderson, Macey L; Stith, Sarah S; Segev, Dorry L; Nicholas, Lauren Hersch
In the United States, the Scientific Registry of Transplant Recipients (SRTR) provides publicly available quality report cards. These reports have historically rated transplant programs using a 3-tier system. In 2016, the SRTR temporarily transitioned to a 5-tier system, which classified more programs as under-performing. As part of a larger survey about transplant quality metrics, we surveyed members of the American Society of Transplant Surgeons and American Society of Transplantation (N = 280 respondents) on transplant center experiences with patient and payer responses to the 5-tier SRTR ratings. Over half of respondents (n = 137, 52.1%) reported ≥1 negative effect of the new 5-tier ranking system, including losing patients, losing insurers, increased concern among patients, and increased concern among referring providers. Few respondents (n = 35, 13.7%) reported any positive effects of the 5-tier ranking system. Lower SRTR-reported scores on the 5-tier scale were associated with increased risk of reporting at least one negative effect in a logistic model (P < 0.01). The change to a more granular rating system provoked an immediate response in the transplant community that may have long-term implications for transplant hospital finances and patient options for transplantation.
PMCID:6219856
PMID: 29802802
ISSN: 1432-2277
CID: 5128712