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Knowledge, attitudes, and planned practice of HIV-positive to HIV-positive transplantation in US transplant centers

Van Pilsum Rasmussen, Sarah E; Bowring, Mary Grace; Shaffer, Ashton A; Henderson, Macey L; Massie, Allan; Tobian, Aaron A R; Segev, Dorry L; Durand, Christine M
BACKGROUND:HIV+ donor organs can now be transplanted into HIV+ recipients (HIV D+/R+) following the HIV Organ Policy Equity (HOPE) Act. Implementation of the HOPE Act requires transplant center awareness and support of HIV D+/R+ transplants. METHODS:To assess center-level barriers to implementation, we surveyed 209 transplant centers on knowledge, attitudes, and planned HIV D+/R+ protocols. RESULTS:Responding centers (n = 114; 56%) represented all UNOS regions. Fifty centers (93 organ programs) planned HIV D+/R+ protocols (kidney n = 48, liver n = 34, pancreas n = 8, heart n = 2, lung = 1), primarily in the eastern United States (28/50). Most (91.2%) were aware that HIV D+/R+ transplantation is legal; 21.4% were unaware of research restrictions. Respondents generally agreed with HOPE research criteria except the required experience with ≥5 HIV+ transplants by organ type. Centers planning HIV D+/R+ protocols had higher transplant volume, HIV+ recipient volume, increased infectious risk donor utilization, and local HIV prevalence (P < 0.01). Centers not planning HIV D+/R+ protocols were more likely to believe their HIV+ candidates would not accept HIV+ donor organs (P < 0.001). Most centers (83.2%) supported HIV+ living donation. CONCLUSIONS:Although many programs plan HIV D+/R+ transplantation, center-level barriers remain including geographic clustering of kidney/liver programs and concerns about HIV+ candidate willingness to accept HIV+ donor organs.
PMCID:6191317
PMID: 30074638
ISSN: 1399-0012
CID: 5128872

Living donor postnephrectomy kidney function and recipient graft loss: A dose-response relationship

Holscher, Courtenay M; Ishaque, Tanveen; Garonzik Wang, Jacqueline M; Haugen, Christine E; DiBrito, Sandra R; Jackson, Kyle R; Muzaale, Abimereki D; Massie, Allan B; Al Ammary, Fawaz; Ottman, Shane E; Henderson, Macey L; Segev, Dorry L
Development of end-stage renal disease (ESRD) in living kidney donors is associated with increased graft loss in the recipients of their kidneys. Our goal was to investigate if this relationship was reflected at an earlier stage postdonation, possibly early enough for recipient risk prediction based on donor response to nephrectomy. Using national registry data, we studied 29 464 recipients and their donors from 2008-2016 to determine the association between donor 6-month postnephrectomy estimated GFR (eGFR) and recipient death-censored graft failure (DCGF). We explored donor BMI as an effect modifier, given the association between obesity and hyperfiltration. On average, risk of DCGF increased with each 10 mL/min decrement in postdonation eGFR (adjusted hazard ratio [aHR] 1.06, 95% confidence interval [CI] 1.02-1.10, P = .007). The association was attenuated with higher donor BMI (interaction P = .049): recipients from donors with BMI = 20 (aHR 1.12, 95% CI 1.04-1.19, P = .002) and BMI = 25 (aHR 1.07, 95% CI 1.03-1.12, P = .001) had a higher risk of DCGF with each 10 mL/min decrement in postdonation eGFR, whereas recipients from donors with BMI = 30 and BMI = 35 did not have a higher risk. The relationship between postdonation eGFR, donor BMI, and recipient graft loss can inform counseling and management of living donor kidney transplant recipients.
PMCID:6219620
PMID: 30086198
ISSN: 1600-6143
CID: 5128882

Assessing the Attitudes and Perceptions Regarding the Use of Mobile Health Technologies for Living Kidney Donor Follow-Up: Survey Study

Eno, Ann K; Thomas, Alvin G; Ruck, Jessica M; Van Pilsum Rasmussen, Sarah E; Halpern, Samantha E; Waldram, Madeleine M; Muzaale, Abimereki D; Purnell, Tanjala S; Massie, Allan B; Garonzik Wang, Jacqueline M; Lentine, Krista L; Segev, Dorry L; Henderson, Macey L
BACKGROUND:In 2013, the Organ Procurement and Transplantation Network began requiring transplant centers in the United States to collect and report postdonation living kidney donor follow-up data at 6 months, 1 year, and 2 years. Despite this requirement, <50% of transplant centers have been able to collect and report the required data. Previous work identified a number of barriers to living kidney donor follow-up, including logistical and administrative barriers for transplant centers and cost and functional barriers for donors. Novel smartphone-based mobile health (mHealth) technologies might reduce the burden of living kidney donor follow-up for centers and donors. However, the attitudes and perceptions toward the incorporation of mHealth into postdonation care among living kidney donors are unknown. Understanding donor attitudes and perceptions will be vital to the creation of a patient-oriented mHealth system to improve living donor follow-up in the United States. OBJECTIVE:The goal of this study was to assess living kidney donor attitudes and perceptions associated with the use of mHealth for follow-up. METHODS:We developed and administered a cross-sectional 14-question survey to 100 living kidney donors at our transplant center. All participants were part of an ongoing longitudinal study of long-term outcomes in living kidney donors. The survey included questions on smartphone use, current health maintenance behaviors, accessibility to health information, and attitudes toward using mHealth for living kidney donor follow-up. RESULTS:Of the 100 participants surveyed, 94 owned a smartphone (35 Android, 58 iPhone, 1 Blackberry), 37 had accessed their electronic medical record on their smartphone, and 38 had tracked their exercise and physical activity on their smartphone. While 77% (72/93) of participants who owned a smartphone and had asked a medical question in the last year placed the most trust with their doctors, nurses, or other health care professionals regarding answering a health-related question, 52% (48/93) most often accessed health information elsewhere. Overall, 79% (74/94) of smartphone-owning participants perceived accessing living kidney donor information and resources on their smartphone as useful. Additionally, 80% (75/94) perceived completing some living kidney donor follow-up via mHealth as useful. There were no significant differences in median age (60 vs 59 years; P=.65), median years since donation (10 vs 12 years; P=.45), gender (36/75, 36%, vs 37/75, 37%, male; P=.57), or race (70/75, 93%, vs 18/19, 95%, white; P=.34) between those who perceived mHealth as useful for living kidney donor follow-up and those who did not, respectively. CONCLUSIONS:Overall, smartphone ownership was high (94/100, 94.0%), and 79% (74/94) of surveyed smartphone-owning donors felt that it would be useful to complete their required follow-up with an mHealth tool, with no significant differences by age, sex, or race. These results suggest that patients would benefit from an mHealth tool to perform living donor follow-up.
PMCID:6231841
PMID: 30305260
ISSN: 2291-5222
CID: 5129012

Clinical Utility and Interpretation of CKD Stages in Living Kidney Donors [Meeting Abstract]

Massie, Allan; Henderson, Macey L.; Snyder, Jon; Al Ammary, Fawaz; Segev, Dorry L.
ISI:000444541200075
ISSN: 0041-1337
CID: 5132372

Pre-Donation Renal Function, Early Post-Donation Renal Function, and Subsequent ESRD Risk in Living Kidney Donors [Meeting Abstract]

Massie, Allan; Fahmy, Lara M.; Henderson, Macey L.; Thomas, Alvin; Snyder, Jon; Al Ammary, Fawaz; Segev, Dorry L.
ISI:000444541200076
ISSN: 0041-1337
CID: 5132382

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

Miscommunicating NOTA Can Be Costly to Living Donors [Letter]

Mittelman, M; Thiessen, C; Chon, W J; Clayville, K; Cronin, D C; Fisher, J S; Fry-Revere, S; Gross, J A; Hanneman, J; Henderson, M L; Ladin, K; Mysel, H; Sherman, L A; Willock, L; Gordon, E J
PMID: 27599256
ISSN: 1600-6143
CID: 5480412

Considering Tangible Benefit for Interdependent Donors: Extending a Risk-Benefit Framework in Donor Selection

Van Pilsum Rasmussen, S E; Henderson, M L; Kahn, J; Segev, D L
From its infancy, live donor transplantation has operated within a framework of acceptable risk to donors. Such a framework presumes that risks of living donation are experienced by the donor while all benefits are realized by the recipient, creating an inequitable distribution that demands minimization of donor risk. We suggest that this risk-tolerance framework ignores tangible benefits to the donor. A previously proposed framework more fully considers potential benefits to the donor and argues that risks and benefits must be balanced. We expand on this approach, and posit that donors sharing a household with and/or caring for a potential transplant patient may realize tangible benefits that are absent in a more distantly related donation (e.g. cousin, nondirected). We term these donors, whose well-being is closely tied to their recipient, "interdependent donors." A flexible risk-benefit model that combines risk assessment with benefits to interdependent donors will contribute to donor evaluation and selection that more accurately reflects what is at stake for donors. In so doing, a risk-benefit framework may allow some donors to accept greater risk in donation decisions.
PMCID:6108434
PMID: 28425206
ISSN: 1600-6143
CID: 5480422

Living Organ Donation and Informed Consent in the United States: Strategies to Improve the Process

Henderson, Macey L; Gross, Jed Adam
About 6,000 individuals participate in the U.S. transplant system as a living organ donor each year. Organ donation (most commonly a kidney or part of liver) by living individuals is a unique procedure, where healthy patients undergo a major surgical operation without any direct functional benefit to themselves. In this article, the authors explore how the ideal of informed consent guides education and evaluation for living organ donation. The authors posit that informed consent for living organ donation is a process. Though the steps in this process are partially standardized through national health policy, they can be improved through institutional structures at the local, transplant center-level. Effective structures and practices aimed at supporting and promoting comprehensive informed consent provide more opportunities for candidates to ask questions about the risks and benefits of living donation and to opt out voluntarily Additionally, these practices could enable new ways of measuring knowledge and improving the consent process.
PMID: 28661285
ISSN: 1748-720x
CID: 5480432

Social media and organ donation: Ethically navigating the next frontier

Henderson, M L; Clayville, K A; Fisher, J S; Kuntz, K K; Mysel, H; Purnell, T S; Schaffer, R L; Sherman, L A; Willock, E P; Gordon, E J
As the organ shortage continues to grow, the creation of social media communities by transplant hospitals and the public is rapidly expanding to increase the number of living donors. Social media communities are arranged in myriad ways and without standardization, raising concerns about transplant candidates' and potential donors' autonomy and quality of care. Social media communities magnify and modify extant ethical issues in deceased and living donation related to privacy, confidentiality, professionalism, and informed consent, and increase the potential for undue influence and coercion for potential donors and transplant candidates. Currently, no national ethical guidelines have been developed in the United States regarding the use of social media to foster organ transplantation. We provide an ethical framework to guide transplant stakeholders in using social media for public and patient communication about transplantation and living donation, and offer recommendations for transplant clinical practice and future research.
PMID: 28744966
ISSN: 1600-6143
CID: 5480442