Managing the Costs of Routine Follow-up Care After Living Kidney Donation: a Review and Survey of Contemporary Experience, Practices, and Challenges.

Purpose of Review: While living organ donor follow-up is mandated for 2 years in the USA, formal guidance on recovering associated costs of follow-up care is lacking. In this review, we discuss current billing practices of transplant programs for living kidney donor follow-up, and propose future directions for managing follow-up costs and supporting cost neutrality in donor care. Recent Findings: Living donors may incur costs and financial risks in the donation process, including travel, lost time from work, and dependent care. In addition, adherence to the Organ Procurement and Transplantation Network (OPTN) mandate for US transplant programs to submit 6-, 12-, and 24-month postdonation follow-up data to the national registry may incur out-of-pocket medical costs for donors. Notably, the Centers for Medicare and Medicaid Services (CMS) has explicitly disallowed transplant programs to bill routine, mandated follow-up costs to the organ acquisition cost center or to the recipient's Medicare insurance. We conducted a survey of transplant staff in the USA (distributed October 22, 2020-March 15, 2021), which identified that the mechanisms for recovering or covering the costs of mandated routine postdonation follow-up at responding programs commonly include billing recipients' private insurance (40%), while 41% bill recipients' Medicare insurance. Many programs reported utilizing institutional allowancing (up to 50%), and some programs billed the organ acquisition cost center (25%). A small percentage (11%) reported billing donors or donors' insurance. Summary: To maintain a high level of adherence to living donor follow-up without financially burdening donors, up-to-date resources are needed on handling routine donor follow-up costs in ways that are policy-compliant and effective for donors and programs. Development of a government-supported national living donor follow-up registry like the Living Donor Collective may provide solutions for aspects of postdonation follow-up, but requires transplant program commitment to register donors and donor candidates as well as donor engagement with follow-up outreach contacts after donation. Supplementary Information: The online version contains supplementary material available at 10.1007/s40472-022-00379-w.

Fostamatinib for the Treatment of Hospitalized Adults With Coronavirus Disease 2019: A Randomized Trial.

BACKGROUND: Coronavirus disease 2019 (COVID-19) requiring hospitalization is characterized by robust antibody production, dysregulated immune response, and immunothrombosis. Fostamatinib is a novel spleen tyrosine kinase inhibitor that we hypothesize will ameliorate Fc activation and attenuate harmful effects of the anti-COVID-19 immune response. METHODS: We conducted a double-blind, randomized, placebo-controlled trial in hospitalized adults requiring oxygen with COVID-19 where patients receiving standard of care were randomized to receive fostamatinib or placebo. The primary outcome was serious adverse events by day 29. RESULTS: A total of 59 patients underwent randomization (30 to fostamatinib and 29 to placebo). Serious adverse events occurred in 10.5% of patients in the fostamatinib group compared with 22% in placebo (P = .2). Three deaths occurred by day 29, all receiving placebo. The mean change in ordinal score at day 15 was greater in the fostamatinib group (-3.6 ±â€…0.3 vs -2.6 ±â€…0.4, P = .035) and the median length in the intensive care unit was 3 days in the fostamatinib group vs 7 days in placebo (P = .07). Differences in clinical improvement were most evident in patients with severe or critical disease (median days on oxygen, 10 vs 28, P = .027). There were trends toward more rapid reductions in C-reactive protein, D-dimer, fibrinogen, and ferritin levels in the fostamatinib group. CONCLUSION: For COVID-19 requiring hospitalization, the addition of fostamatinib to standard of care was safe and patients were observed to have improved clinical outcomes compared with placebo. These results warrant further validation in larger confirmatory trials. CLINICAL TRIALS REGISTRATION: Clinicaltrials.gov, NCT04579393.

Education Priorities and What Matters to Those Considering Living Kidney Donation.

INTRODUCTION: Although informed consent content elements are prescribed in detailed regulatory guidance, many live kidney donors describe feeling underprepared and under informed. The goal of this pilot study was to explore the educational components needed to support an informed decision-making process for living kidney donors. METHODS/APPROACH: A qualitative description design was conducted with thematic analysis of 5 focus groups with 2 cohorts: living kidney donor candidates (n = 11) and living kidney donors (n = 8). FINDINGS: The educational components needed to engage in an informed decision-making process were: 1) contingent upon, and motivated by, personal circumstances; 2) supported through explanation of risks and benefits; 3) enhanced by understanding the overall donation experience; and 4) personalized by talking to another donor. DISCUSSION: Tailoring education to meet the needs for fully informed decision-making is essential. Current education requirements, as defined by regulatory bodies, remain challenging to transplant teams attempting to ensure fully informed consent of living kidney donor candidates. Information on the emotional, financial, and overall life impact is needed, along with acknowledgement of relational ties driving donor motivations and the hoped-for recipient outcomes. Discussion of care practices, and access to peer mentoring may further strengthen the informed decision-making process.

Care of international living kidney donor candidates in the United States: A survey of contemporary experience, practice, and challenges.

The evaluation and care of non-US citizen, non-US residents who wish to come to the United States to serve as international living kidney donors (ILKDs) can pose unique challenges. We surveyed US transplant programs to better understand practices related to ILKD care. We distributed the survey by email and professional society list-servs (Fall 2018, assessing 2017 experience). Eighty-five programs responded (36.8% program response rate), of which 80 considered ILKD candidates. Only 18 programs had written protocols for ILKD evaluation. Programs had a median of 3 (range: 0,75) ILKD candidates who initiated contact during the year, from origin countries spanning 6 continents. Fewer (median: 1, range: 0,25) were approved for donation. Program-reported reasons for not completing ILKD evaluations included visa barriers (58.6%), inability to complete evaluation (34.3%), concerns regarding follow-up (31.4%) or other healthcare access (28.6%), and financial impacts (21.4%). Programs that did not evaluate ILKDs reported similar concerns. Staff time required to evaluate ILKDs was estimated as 1.5-to-3-times (47.9%) or >3-times (32.9%) that needed for domestic candidates. Among programs accepting ILKDs, on average 55% reported successful completion of 1-year follow-up. ILKD evaluation is a resource-intensive process with variable outcomes. Planning and commitment are necessary to care for this unique candidate group.

What do patients want? A qualitative exploration of patients' needs and expectations regarding online access to their primary care record.

BACKGROUND: Primary care records have traditionally served the needs and demands of clinicians rather than those of the patient. GP contracts in England state practices must promote and offer registered patients online access to their primary care record and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients' needs and expectations regarding online access. AIM: To explore patients' views about accessing online primary care records and to find out how patients would like to interact with their records and what support they may need. METHOD: Interviews and focus groups with a sample of 50 patients from a variety of socio-demographic backgrounds who were either; eligible for the NHS Health Check; had multimorbidities or were carers. Thematic analysis of data identified major themes impacting upon patients' wishes and needs as well as highlighting population-specific issues. RESULTS: Participants highlighted a wide range of views about the benefits and drawbacks of accessing their records online. The majority of participants indicated that they would be more likely to access their online primary care record if improvements were made to the design, reliability and functionality of existing online record services. Carers found accessing online records particularly useful. CONCLUSION: Consultation with patients and carers about their experiences of accessing online records; support needs and preferred functions can provide useful insights to inform the future design of online record services.

Evaluation and care of international living kidney donor candidates: Strategies for addressing common considerations and challenges.

End-stage kidney disease patients in the United States may have family members or friends who are not US citizens or residents but are willing to serve as their living kidney donor in the United States ("international donors"). In July 2017, the American Society for Transplantation (AST) Live Donor Community of Practice (LDCOP) convened a multidisciplinary workgroup of experts in living donation care, including coordinators, social workers, donor advocates, administrators, and physicians, to evaluate educational gaps related to the evaluation and care of international donors. The evaluation of international living donor candidates is a resource-intensive process that raises key considerations for assessing risk of exploitation/inducement and addressing communication barriers, logistics barriers, and access to care in their home country. Through consensus-building discussions, we developed recommendations related to: (a) establishing program guidelines for international donor candidate evaluation and selection; (b) initial screening; (c) logistics planning; (d) comprehensive evaluation; and (e) postdonation care and follow-up. These recommendations are not intended to direct formal policy, but rather as guidance to help programs more efficiently and effectively structure and execute evaluations and care coordination. We also offer recommendations for research and advocacy to optimize the care of this unique group of living donors.

Living donor program crisis management plans: Current landscape and talking point recommendations.

Although minimized by expert evaluation, operative technique, and postoperative care, the extremely low risk of perioperative mortality following living kidney or liver donation will never be eliminated. Furthermore, anticipation of poor donor outcome may simultaneously be a source of anxiety for physicians and programs and also be a circumstance for which they are unprepared. We conducted a national survey of US transplant surgeons to understand experiences with and systemic preparedness for the event of a living donor death. Respondents represented 87 unique transplant programs (71 kidney and 16 liver donor programs). Perioperative deaths were rare, as expected. Although most respondents (N = 57, 64% of total respondents; 88% of liver programs) reported being moderately to extremely concerned about a future living donor death at their institution, only 30 (33% of total program respondents) had a written plan available in the case of such an event; 63% of programs would find guidance and recommendations useful. To help address this gap, the American Society of Transplantation Live Donor Community of Practice (AST LDCOP) developed Living Donor Crisis Management Plan Talking Points suitable to guide crisis plan development at transplant programs.

Best practices to optimize utilization of the National Living Donor Assistance Center for the financial assistance of living organ donors.

Living organ donors face direct costs when donating an organ, including transportation, lodging, meals, and lost wages. For those most in need, the National Living Donor Assistance Center (NLDAC) provides reimbursement to defray travel and subsistence costs associated with living donor evaluation, surgery, and follow-up. While this program currently supports 9% of all US living donors, there is tremendous variability in its utilization across US transplant centers, which may limit patient access to living donor transplantation. Based on feedback from the transplant community, NLDAC convened a Best Practices Workshop on August 2, 2018, in Arlington, VA, to identify strategies to optimize transplant program utilization of this valuable resource. Attendees included team members from transplant centers that are high NLDAC users; the NLDAC program team; and Advisory Group members. After a robust review of NLDAC data and engagement in group discussions, the workgroup identified concrete best practices for administrative and transplant center leadership involvement; for individuals filing NLDAC applications at transplant centers; and to improve patient education about potential financial barriers to living organ donation. Multiple opportunities were identified for intervention to increase transplant programs' NLDAC utilization and reduce financial burdens inhibiting expansion of living donor transplantation in the United States.

Interventions for involving older patients with multi-morbidity in decision-making during primary care consultations.

BACKGROUND: Older patients with multiple health problems (multi-morbidity) value being involved in decision-making about their health care. However, they are less frequently involved than younger patients. To maximise quality of life, day-to-day function, and patient safety, older patients require support to identify unmet healthcare needs and to prioritise treatment options. OBJECTIVES: To assess the effects of interventions for older patients with multi-morbidity aiming to involve them in decision-making about their health care during primary care consultations. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL; all years to August 2018), in the Cochrane Library; MEDLINE (OvidSP) (1966 to August 2018); Embase (OvidSP) (1988 to August 2018); PsycINFO (OvidSP) (1806 to August 2018); the Cumulative Index to Nursing and Allied Health Literature (CINAHL) (Ovid) (1982 to September 2008), then in Ebsco (2009 to August 2018); Centre for Reviews and Dissemination Databases (Database of Abstracts and Reviews of Effects (DARE)) (all years to August 2018); the Health Technology Assessment (HTA) Database (all years to August 2018); the Ongoing Reviews Database (all years to August 2018); and Dissertation Abstracts International (1861 to August 2018). SELECTION CRITERIA: We sought randomised controlled trials (RCTs), cluster-RCTs, and quasi-RCTs of interventions to involve patients in decision-making about their health care versus usual care/control/another intervention, for patients aged 65 years and older with multi-morbidity in primary care. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methodological procedures. Meta-analysis was not possible; therefore we prepared a narrative synthesis. MAIN RESULTS: We included three studies involving 1879 participants: two RCTs and one cluster-RCT. Interventions consisted of: · patient workshop and individual coaching using behaviour change techniques; · individual patient coaching utilising cognitive-behavioural therapy and motivational interviewing; and · holistic patient review, multi-disciplinary practitioner training, and organisational change. No studies reported the primary outcome 'patient involvement in decision-making' or the primary adverse outcome 'less patient involvement as a result of the intervention'. Comparing interventions (patient workshop and individual coaching, holistic patient review plus practitioner training, and organisational change) to usual care: we are uncertain whether interventions had any effect on patient reports of high self-rated health (risk ratio (RR) 1.40, 95% confidence interval (CI) 0.36 to 5.49; very low-certainty evidence) or on patient enablement (mean difference (MD) 0.60, 95% CI -9.23 to 10.43; very low-certainty evidence) compared with usual care. Interventions probably had no effect on health-related quality of life (adjusted difference in means 0.00, 95% CI -0.02 to 0.02; moderate-certainty evidence) or on medication adherence (MD 0.06, 95% CI -0.05 to 0.17; moderate-certainty evidence) but probably improved the number of patients discussing their priorities (adjusted odds ratio 1.85, 95% CI 1.44 to 2.38; moderate-certainty evidence) and probably increased the number of nurse consultations (incident rate ratio from adjusted multi-level Poisson model 1.37, 95% CI 1.17 to 1.61; moderate-certainty evidence) compared with usual care. Practitioner outcomes were not measured. Interventions were not reported to adversely affect rates of participant death or anxiety, emergency department attendance, or hospital admission compared with usual care. Comparing interventions (patient workshop and coaching, individual patient coaching) to attention-control conditions: we are uncertain whether interventions affect patient-reported high self-rated health (RR 0.38, 95% CI 0.15 to 1.00, favouring attention control, with very low-certainty evidence; RR 2.17, 95% CI 0.85 to 5.52, favouring the intervention, with very low-certainty evidence). We are uncertain whether interventions affect patient enablement and engagement by increasing either patient activation (MD 1.20, 95% CI -8.21 to 10.61; very low-certainty evidence) or self-efficacy (MD 0.29, 95% CI -0.21 to 0.79; very low-certainty evidence); or whether interventions affect the number of general practice visits (MD 0.51, 95% CI -0.34 to 1.36; very low-certainty evidence), compared to attention-control conditions. The intervention may however lead to more patient-reported changes in management of their health conditions (RR 1.82, 95% CI 1.35 to 2.44; low-certainty evidence). Practitioner outcomes were not measured. Interventions were not reported to adversely affect emergency department attendance nor hospital admission when compared with attention control. Comparing one form of intervention with another: not measured. There was 'unclear' risk across studies for performance bias, detection bias, and reporting bias; however, no aspects were 'high' risk. Evidence was downgraded via GRADE, most often because of 'small sample size' and 'evidence from a single study'. AUTHORS' CONCLUSIONS: Limited available evidence does not allow a robust conclusion regarding the objectives of this review. Whilst patient involvement in decision-making is seen as a key mechanism for improving care, it is rarely examined as an intervention and was not measured by included studies. Consistency in design, analysis, and evaluation of interventions would enable a greater likelihood of robust conclusions in future reviews.

Specialist healthcare services for UK care home residents: a latent class analysis.

AIM: To identify discrete approaches to specialist healthcare support for older care home residents in the UK and to estimate their prevalence. BACKGROUND: Internationally, a range of new initiatives are emerging to meet the multiple and complex healthcare needs of care home residents. However, little is known about their relative effectiveness and, given their heterogeneity, a classification scheme is required to enable research staff to explore this. METHOD: A UK survey collected information on the funding, age, coverage, aims, staffing and activities of 64 specialist care home support services. Latent class analysis (LCA) was used to allocate the sample into subgroups with similar characteristics. FINDINGS: Three classes were identified. Class 1 (55% of sample) contained services with a high probability of providing scheduled input (regular preplanned visits) and support for all residents and a moderate probability of undertaking medication management, but a low probability of training care home staff ('predominantly direct care'). Class 2 (23% of sample) had a moderate/high probability of providing scheduled input, support for all residents, medication management and training ('direct and indirect care'). Class 3 (22% of sample) had a low probability of providing scheduled input, support for all residents and medication management, but a high probability of providing training for care home staff ('predominantly indirect care'). Consultants were more likely to be members of services in Class 1 than Class 2, and Class 2 than Class 3. CONCLUSIONS: LCA offers a promising approach to the creation of a taxonomy of specialist care home support services. The skills and knowledge required by healthcare staff vary between classes, raising important issues for service design. The proposed classification can be used to explore the extent to which different organisational forms are associated with better resident, process and service outcomes.

Impact of the OPTN transmissible diseases policy and US PHS increased risk donor guidelines on living donor candidates.

Donor-derived human immunodeficiency virus (HIV), hepatitis C virus (HCV), and hepatitis B virus (HBV) transmissions in transplantation have led to policies mandating assessment of donor behavioral history, and disclosure of donor increased risk (IR) status to recipients. Organ Procurement Transplantation Network (OPTN) policy safeguards were promulgated in the context of deceased donation, with its narrow time window for organ utilization and uncertainty about donor history. These policies have been applied to living donation without substantive data on risk of disease transmission in living donor transplantation. Unlike for deceased donors, the OPTN does not collect data on living donor IR status. Given the feasibility of thorough living donor evaluation via already-mandated lab tests and clinical assessments, living donor IR assessment and associated disclosures may have limited benefit in improving recipient informed consent. Applying the current IR policy to living donors may also introduce unintended consequences to donors and recipients, causing donors psychological harm, delays in donation to avoid IR status disclosure, and potential withdrawal from donation. We suggest strategies that reduce risk of harm to donor candidates while maintaining policy compliance, and review additional approaches for evaluating risk of disease transmission in living donor candidates. Data on the risk of disease transmission by living donors are needed to inform policy modification.

Billing for living kidney donor care: Balancing cost recovery, regulatory compliance, and minimized donor burden.

PURPOSE: To provide standardized guidance for transplant programs to maximize financial reimbursement related to living donor care, and to minimize financial consequences of evaluation, surgical and follow-up care to living donor candidates and donors. RECENT FINDINGS: In 2014, the American Society for Transplantation (AST) Live Donor Community of Practice (LDCOP) "Consensus Conference on Best Practices in Live Kidney Donation" identified inconsistencies in billing practices as a barrier to living donor financial neutrality, and issued a strong recommendation that the transplant community actively pursue strategies and policies to make living donation a financially neutral act, within the framework of federal law. The LDCOP convened a multidisciplinary group of experts to review and synthesize current Medicare regulations and commercial payer practices related to billing for living donor care, and the implications for transplant programs and patients. We developed guidance for transplant program staff related to strategies to consistently and appropriately obtain reimbursement via the Medicare Cost Report by utilizing organ acquisition; coordinate available coverage for donor pretesting, evaluation, hospitalization, follow-up care, and complications; coordinate charges in kidney paired donation; and maximize coverage through private insurance contracting. We also offer recommendations to protect donor confidentiality in the context of billing, and to educate and prepare donor candidates and donors about any remaining gaps in coverage related to donation. SUMMARY: Best practices in billing for living donation-related care should focus on balancing cost recovery, regulatory compliance, and minimized donor burden. Herein we offer 9 recommendations for best practice. We also offer a platform of 7 recommendations for research & advocacy efforts to better understand the climate of living donor medical costs, and to optimize billing practices that support provision of living donor transplant services to all patients who can benefit and to achieve financial neutrality for living donors.

Safety work and risk management as burdens of treatment in primary care: insights from a focused ethnographic study of patients with multimorbidity.

BACKGROUND: In primary health care, patient safety failures can arise in service access, doctor-patient relationships, communication between care providers, relational and management continuity, or technical procedures. Through the lens of multimorbidty, and using qualitative ethnographic methods, our study aimed to illuminate safety issues in primary care. METHODS: Data were triangulated from electronic health records (EHRs); observation of primary care consultations; annual interviews with patients, (informal) care providers and GPs. A thematic analysis of observation, interview and field note material sought to describe the patient safety issues encountered and any associated factors or processes. A more detailed longitudinal description of 6 cases was used to contextualise safety issues identified in observation, interviews and EHRs. RESULTS: Twenty-six patients were recruited. Events which could lead to harm were found in all areas of a framework based on published literature. "Under" and "over" consultation as a precursor of safety failures emerged through thematic analysis of observation and interview material. Other findings concerned workload (for doctors and patients) and the limitations of short consultation times. There were differences in health data collected directly from the patients versus that found in EHRs. Examples included reference to a stroke history and diagnoses for CKD and hypertension. Case study analysis revealed specific issues which appeared contextual to safety concerns, mostly around the management of polypharmacy and patient medication adherence. Clinical imperatives appear around risk management, but the study findings point to a potential conflict with patient expectations around investigation, diagnosis and treatment. DISCUSSION: Patient safety work involves further burdens on top of existing workload for both clinicians and patients. In this conceptualisation, safety work seemingly forms part of a negative feedback loop with patient safety itself. A line of argument drawn from the triangulation of findings from different sources, points to a tension between the desirability of a minimally disruptive medicine versus safety risks possibly associated with 'under' or 'over' consultation. Multimorbidity acts as a magnifier of tensions in the delivery of health services and quality care in general practice. More attention should be put on system design than patient or professional behaviour.

Empowering people to help speak up about safety in primary care: Using codesign to involve patients and professionals in developing new interventions for patients with multimorbidity.

BACKGROUND: Multimorbidity, defined as the presence of two or more long-term conditions, is increasingly common in primary care, and patients with multimorbidity may face particular barriers to quality of care and increased safety risks due to the complexity of managing multiple conditions. Consistent with calls to directly involve service users in improving care, we aimed to use design materials to codesign new interventions to improve safety in primary care. DESIGN: We drew on two established methods-accelerated experience-based codesign and the future workshop approach. We synthesized design materials based on research into the patient experience of safety and multimorbidity in primary care to enable both patients, service users and carers, and primary health-care professionals to propose interventions to improve care. RESULTS: Both patients and professionals prioritized polypharmacy as a threat to safety. Their recommendations for supportive interventions were consistent with Burden of Treatment theory, emphasizing the limited capacity of patients with multimorbidity and the need for services to proactively offer support to reduce the burden of managing complex treatment regimes. DISCUSSION & CONCLUSIONS: The process was feasible and acceptable to participants, who valued the opportunity to jointly propose new interventions. The iterative workshop approach enabled the research team to better explore and refine the suggestions of attendees. Final recommendations included the need for accessible reminders to support medication adherence and medication reviews for particularly vulnerable patients conducted with pharmacists within GP practices.

Threats to patient safety in primary care reported by older people with multimorbidity: baseline findings from a longitudinal qualitative study and implications for intervention.

BACKGROUND: In primary care, older patients with multimorbidity (two or more long-term conditions) are especially likely to experience patient safety incidents. Risks to safety in this setting arise as a result of patient, staff and system factors; particularly where these interact or fail to do so. Recent research and policy highlight the important contribution patients can make to improving safety. Older patients with multimorbidity may have the most to gain from increasing their involvement but before interventions can be developed to support them to improve their patient safety, more needs to be known about how this is threatened and how patients respond to perceived threats. We sought to identify and describe threats to patient safety in primary care among older people with multimorbidity, to provide a better understanding of how these are experienced and to inform the development of interventions to reduce risks to patient safety. METHODS: Twenty-six older people, aged 65 or over, with multimorbidity were recruited to a longitudinal qualitative study. At baseline, data on their health and healthcare were collected through semi-structured interviews. Data were analysed thematically, using a framework developed from a previous synthesis of qualitative studies of patient safety in primary care. RESULTS: Threats to patient safety were organised into six themes, across three domains of health and care. These encompassed all aspects of the patient journey, from access to everyday management. Across the journey, many issues arose due to poor communication, and uncoordinated care created extra burdens for patients and healthcare staff. Patients' sense of safety and trust in their care providers were especially threatened when they felt their needs were ignored, or when they perceived responses from staff as inappropriate or insensitive. CONCLUSIONS: For older patients with multimorbidity, patient safety is intrinsically linked to the challenges people face when managing health conditions, navigating the healthcare system, and negotiating care. We consider the implications of this for the development of interventions to reduce threats to patient safety. Potential patient-centred mechanisms include providing patients with more realistic expectations for primary care, and supporting them to communicate their needs and concerns more effectively.

A Case-Based Analysis of Whether Living Related Donors Listed for Transplant Share ESRD Causes with Their Recipients.

BACKGROUND AND OBJECTIVES: Two recent studies reported increased risk of ESRD after kidney donation. In both, the majority of ESRD was seen in those donating to a relative. Confounding this observation is that, in the absence of donation, relatives of those with ESRD are at increased risk for ESRD. Understanding the pathogenesis and risk factors for postdonation ESRD is critical for both donor selection and counseling. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We hypothesized that if familial relationship was an important consideration in pathogenesis, the donor and linked recipient would share ESRD etiology. We obtained information from the Organ Procurement and Transplantation Network (OPTN) on all living kidney donors subsequently waitlisted for a kidney transplant in the United States between January 1, 1996 and November 30, 2015, to determine (1) the donor-recipient relationship and (2) whether related donor-recipient pairs had similar causes of ESRD. RESULTS: We found that a significant amount of information, potentially available at the time of listing, was not reported to the OPTN. Of 441 kidney donors listed for transplant, only 169 had information allowing determination of interval from donation to listing, and only 99 (22% of the total) had information on the donor-recipient relationship and ESRD etiology. Of the 99 donors, 87 were related to their recipient. Strikingly, of the 87, only a minority (23%) of donor-recipient pairs shared ESRD etiology. Excluding hypertension, only 8% shared etiology. CONCLUSIONS: A better understanding of ESRD in donors requires complete and detailed data collection, as well as a method to capture all ESRD end points. This study highlights the absence of critical information that is urgently needed to provide a meaningful understanding of ESRD after kidney donation. We found that of living related donors listed for transplant, where both donor and recipient cause of ESRD is recorded, only a minority share ESRD etiology with their recipient.

Barriers to the use of a federal travel grant by living kidney donors.

Living organ donation involves significant out-of-pocket costs, which burden donor candidates and may be an obstacle to donation. There is a single US grant (the National Living Donor Assistance Center-NLDAC) to cover live donor travel costs. Although there may be center-specific variability in grant utilization, prospective donors-and their intended recipients-must also meet eligibility criteria. In fact, the NLDAC grant is used by <10% of US live donors annually. We studied 154 consecutive kidney donor clinic evaluations (November 1, 2014-August 30, 2015) to determine eligibility and usage patterns during the evaluation process. Of these, 63 (41%) were local, had travel benefits, or declined. Of the remaining 91 prospective donors who might have benefited from grant support, only 29 (32%) obtained the grant. The other 62 (68%) did not meet eligibility screening. The major reason prospective donors were ineligible was that the recipient's household income was outside the required means test (ie, >300% of the federal poverty level) (n=51; 82%). The remaining exclusions (n=11; 18%) included being a nondirected donor, not meeting residency requirements, and "other." Expanding NLDAC eligibility criteria-by broadening the recipient means test or by taking steps to eliminate it from the NLDAC charter-would reduce financial burdens associated with live donation.