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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

Consent and labeling in the use of infectious risk donor kidneys: A response to "Information Overload" [Comment]

Bowring, Mary G; Massie, Allan B; Henderson, Macey; Segev, Dorry L
PMID: 29920936
ISSN: 1600-6143
CID: 5128752

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

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