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173


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

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

Quantifying Postdonation Risk of ESRD in Living Kidney Donors

Massie, Allan B; Muzaale, Abimereki D; Luo, Xun; Chow, Eric K H; Locke, Jayme E; Nguyen, Anh Q; Henderson, Macey L; Snyder, Jon J; Segev, Dorry L
Studies have estimated the average risk of postdonation ESRD for living kidney donors in the United States, but personalized estimation on the basis of donor characteristics remains unavailable. We studied 133,824 living kidney donors from 1987 to 2015, as reported to the Organ Procurement and Transplantation Network, with ESRD ascertainment via Centers for Medicare and Medicaid Services linkage, using Cox regression with late entries. Black race (hazard ratio [HR], 2.96; 95% confidence interval [95% CI], 2.25 to 3.89; P<0.001) and male sex (HR, 1.88; 95% CI, 1.50 to 2.35; P<0.001) was associated with higher risk of ESRD in donors. Among nonblack donors, older age was associated with greater risk (HR per 10 years, 1.40; 95% CI, 1.23 to 1.59; P<0.001). Among black donors, older age was not significantly associated with risk (HR, 0.88; 95% CI, 0.72 to 1.09; P=0.3). Greater body mass index was associated with higher risk (HR per 5 kg/m2, 1.61; 95% CI, 1.29 to 2.00; P<0.001). Donors who had a first-degree biological relationship to the recipient had increased risk (HR, 1.70; 95% CI, 1.24 to 2.34; P<0.01). C-statistic of the model was 0.71. Predicted 20-year risk of ESRD for the median donor was only 34 cases per 10,000 donors, but 1% of donors had predicted risk exceeding 256 cases per 10,000 donors. Risk estimation is critical for appropriate informed consent and varies substantially across living kidney donors. Greater permissiveness may be warranted in older black candidate donors; young black candidates should be evaluated carefully.
PMID: 28450534
ISSN: 1533-3450
CID: 5128232

Patterns of primary care utilization before and after living kidney donation

Alejo, Jennifer L; Luo, Xun; Massie, Allan B; Henderson, Macey L; DiBrito, Sandra R; Locke, Jayme E; Purnell, Tanjala S; Boyarsky, Brian J; Anjum, Saad; Halpern, Samantha E; Segev, Dorry L
BACKGROUND:Annual visits with a primary care provider (PCP) are recommended for living kidney donors to monitor long-term health postdonation, yet adherence to this recommendation is unknown. METHODS:We surveyed 1170 living donors from our center from 1970 to 2012 to ascertain frequency of PCP visits pre- and postdonation. Interviews occurred median (IQR) 6.6 (3.8-11.0) years post-transplant. We used multivariate logistic regression to examine associations between donor characteristics and PCP visit frequency. RESULTS:, P=.001). CONCLUSIONS:The importance of annual PCP visits should be emphasized to all living donors, especially those with less education, men (particularly single men), and donors who did not see their PCP annually before donation.
PMCID:5731477
PMID: 28457016
ISSN: 1399-0012
CID: 5128242

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

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

Impact of an inpatient geriatric consultative service on outcomes for cognitively impaired patients

Nazir, Arif; Khan, Babar; Counsell, Steven; Henderson, Macey; Gao, Sujuan; Boustani, Malaz
BACKGROUND:Impact of geriatric consultative services (GCS) on hospital readmission and mortality outcomes for cognitively impaired (CI) patients is not known. OBJECTIVE:Evaluate impact of GCS on hospital readmission and mortality among CI inpatients. DESIGN/METHODS:Secondary data analysis of a prospective trial of a computerized decision support system between July 1, 2006 and May 30, 2008. SETTING/METHODS:Study conducted at Eskenazi hospital, Indianapolis, Indiana, a 340-bed, public hospital with over 2300 yearly admissions of patients ages 65 years or older. PATIENTS/METHODS:There were 415 inpatients aged 65 years and older with CI enrolled from July 2006 to March 2008. MEASUREMENTS/METHODS:Thirty-day and 1-year mortality and hospital readmission following the index admission. Cox proportional hazard models were used to determine the association between receiving GCS, readmission, or mortality while adjusting for demographics, discharge destination, delirium, Charlson Comorbidity Index, and prior hospitalizations. The propensity score method was used to adjust for the nonrandom assignment of GCS. RESULTS:Patients receiving GCS were older (79 years old, 8.1 standard deviation [SD] vs 76 years old, 7.8 SD; P < 0.001) with higher incidence of delirium (49% vs 29%; P < 0.001). No significant differences were found between the groups for hospital readmission (hazard ratio [HR] = 1.19; 95% confidence interval = 0.89-1.59) and mortality at 12 months of index admission (HR = 0.91; 95% confidence interval = 0.59-1.40). However, a significant increase in readmissions was observed for the GCS group (HR = 1.75; 95% confidence interval = 1.06-2.88) at 30 days postdischarge. CONCLUSION/CONCLUSIONS:One-year postdischarge outcomes of CI patients who received GCS were not different from patients who did not receive the service. New models of care are needed to improve postdischarge readmission and mortality among hospitalized patients with CI.
PMID: 25641773
ISSN: 1553-5606
CID: 5480392

Between Scylla and Charybdis: charting an ethical course for research into financial incentives for living kidney donation

Fisher, J S; Butt, Z; Friedewald, J; Fry-Revere, S; Hanneman, J; Henderson, M L; Ladin, K; Mysel, H; Preczewski, L; Sherman, L A; Thiessen, C; Gordon, E J
New approaches to address the kidney scarcity in the United States are urgently needed. The greatest potential source of kidneys is from living donors. Proposals to offer financial incentives to increase living kidney donation rates remain highly controversial. Despite repeated calls for a pilot study to assess the impact of financial compensation on living kidney donation rates, many fear that financial incentives will exploit vulnerable individuals and cast the field of transplantation in a negative public light, ultimately reducing donation rates. This paper provides an ethical justification for conducting a pilot study of a federally regulated approach to providing financial incentives to living kidney donors, with the goal of assessing donors' perceptions.
PMID: 25833728
ISSN: 1600-6143
CID: 5480402

Development and testing of an implementation strategy for a complex housing intervention: protocol for a mixed methods study

Watson, Dennis P; Young, Jeani; Ahonen, Emily; Xu, Huiping; Henderson, Macey; Shuman, Valery; Tolliver, Randi
BACKGROUND:There is currently a lack of scientifically designed and tested implementation strategies. Such strategies are particularly important for highly complex interventions that require coordination between multiple parts to be successful. This paper presents a protocol for the development and testing of an implementation strategy for a complex intervention known as the Housing First model (HFM). Housing First is an evidence-based practice for chronically homeless individuals demonstrated to significantly improve a number of outcomes. METHODS/DESIGN/METHODS:Drawing on practices demonstrated to be useful in implementation and e-learning theory, our team is currently adapting a face-to-face implementation strategy so that it can be delivered over a distance. Research activities will be divided between Chicago and Central Indiana, two areas with significantly different barriers to HFM implementation. Ten housing providers (five from Chicago and five from Indiana) will be recruited to conduct an alpha test of each of four e-learning modules as they are developed. Providers will be requested to keep a detailed log of their experience completing the modules and participate in one of two focus groups. After refining the modules based on alpha test results, we will test the strategy among a sample of four housing organizations (two from Chicago and two from Indiana). We will collect and analyze both qualitative and quantitative data from administration and staff. Measures of interest include causal factors affecting implementation, training outcomes, and implementation outcomes. DISCUSSION/CONCLUSIONS:This project is an important first step in the development of an evidence-based implementation strategy to increase scalability and impact of the HFM. The project also has strong potential to increase limited scientific knowledge regarding implementation strategies in general.
PMCID:4201917
PMID: 25322728
ISSN: 1748-5908
CID: 5480382

Medical ethics and the media: the value of a story

Henderson, Macey L; Chevinsky, Jennifer
PMID: 25140688
ISSN: 1937-7010
CID: 5480522