The effect of genetic education on the referral of patients to genetic evaluation: Findings from a national survey of nephrologists.

PURPOSE: The success of genomic medicine hinges on the implementation of genetic knowledge in clinical settings. In novel subspecialties, it requires that clinicians refer patients to genetic evaluation or testing, however referral is likely to be affected by genetic knowledge. METHODS: An online survey was administered to self-identified nephrologists working in the United States. Nephrologists' demographic characteristics, genetic education, confidence in clinical genetics, genetic knowledge, and referral rates of patients to genetic evaluation were collected. RESULTS: In total, 201 nephrologists completed the survey. All reported treating patients with genetic forms of kidney disease, and 37% had referred <5 patients to genetic evaluation. A third had limited basic genetic knowledge. Most nephrologists (85%) reported concerns regarding future health insurance eligibility as a barrier to referral to genetic testing. Most adult nephrologists reported insufficient genetic education during residency (65%) and fellowship training (52%). Lower rating of genetic education and lower knowledge in recognizing signs of genetic kidney diseases were significantly associated with lower number of patients referred to the genetic evaluation (P < .001). Most nephrologists reported that improving their genetic knowledge is important for them (>55%). CONCLUSIONS: There is a need to enhance nephrologists' genetic education to increase genetic testing use in nephrology.

Assessment of formats and completeness of paper-based referral letters among urban hospitals in Rwanda: a retrospective baseline study.

BACKGROUND: Patient referral is a process in which a healthcare provider decides to seek assistance due to the limitations of available skills, resources and services offered locally. Paper-based referrals predominantly used in low-income countries hardly follow any procedure. This causes a major gap in communication, coordination, and continuity of care between primary and specialized levels, leading to poor access, delay, duplication and unnecessary costs. The goal of this study is to assess the formats and completeness of existing paper-based referral letters in order to improve health information exchange, coordination, and continuity of care. METHODS: A retrospective exploratory research was conducted in eight public and three private healthcare facilities in the city of Kigali from May to October 2021. A purposive sampling method was used to select hospitals and referral letters from patients' files. A data capture sheet was designed according to the contents of the referral letters and the resulting responses were analyzed descriptively. RESULTS: In public hospitals, five types of updated referral letters were available, in total agreement with World Health Organization (WHO) standards of which two (neonatal transfer form and patient monitoring transfer form) were not used. There was also one old format that was used by most hospitals and another format designed and used by a district hospital (DH) separately. Three formats were designed and used by private hospitals (PH) individually. A total of 2,304 referral letters were perused and the results show that "external transfer" forms were completed at 58.8%; "antenatal, delivery, and postnatal external transfer" forms at 47.5%; "internal transfer" forms at 46.6%; "Referral/counter referral" forms at 46.0%; district hospital referrals (DH2) at 73.4%. Referrals by private hospitals (PH1, PH2 and PH3) were completed at 97.7%, 70.7%, and 0.0% respectively. The major completeness deficit was observed in counter referral information for all hospitals. CONCLUSION: We observed inconsistencies in the format of the available referral letters used by public hospitals, moreover some of them were incompatible with WHO standards. Additionally, there were deficits in the completeness of all types of paper-based referral letters in use. There is a need for standardization and to disseminate the national patient referral guideline in public hospitals with emphasis on referral feedback, referral registry, triage, archiving and a need for regular training in all organizations.

Simultaneous pectus excavatum correction and lung transplantation-A case series.

Severe chest wall deformities are considered an absolute contraindication for lung transplantation. The significantly impaired chest compliance associated with pectus excavatum is thought to result in a high risk of postoperative respiratory complications and significant morbidity and mortality. We herein report our pooled institutional experience consisting of 3 patients who underwent bilateral lung transplantation and simultaneous correction of a pectus excavatum. Two of the patients were children and 1 patient had severe asymmetric pectus. All patients received a size-reduced double lung transplant and the deformity was corrected by a Nuss or modified Ravitch procedure. The perioperative course was complicated by prolonged weaning requiring tracheostomy in 2 of the 3 patients. However, long-term results were good and all 3 patients are alive in excellent clinical condition 72, 60, and 12 months after the transplantation. This case series demonstrates that patients with severe chest wall deformities should not a priori be excluded from lung transplantation, and a combined approach is feasible for selected patients.

Securing the future of kidney transplantation by addressing the challenges of transplant nephrology.

Kidney transplant is a life-changing procedure, and transplant nephrologists, as part of a larger transplant team, play an important role in the field by managing the complex medical needs of transplant patients. The subspecialty of transplant nephrology, however, faces structural challenges related to its workforce, reporting structures, compensation, research and innovation, and health care information technology. The position of transplant nephrology at the academic and operational intersection of medicine and surgery may limit its access to critical resources, hinder academic promotion, and contribute to physician burnout. The authors provide an overview of the subspecialty transplant nephrology and propose solutions. Collaborative efforts that fortify the subspecialty of transplant nephrology will ultimately improve the lives of patients suffering from kidney disease.

Kidney transplant program waitlisting rate as a metric to assess transplant access.

Kidney transplant program performance in the United States is commonly measured by posttransplant outcomes. Inclusion of pretransplant measures could provide a more comprehensive assessment of transplant program performance and necessary information for patient decision-making. In this study, we propose a new metric, the waitlisting rate, defined as the ratio of patients who are waitlisted in a center relative to the person-years referred for evaluation to a program. Furthermore, we standardize the waitlisting rate relative to the state average in Georgia, North Carolina, and South Carolina. The new metric was used as a proof-of-concept to assess transplant-program access compared to the existing transplant rate metric. The study cohorts were defined by linking 2017 United States Renal Data System (USRDS) data with transplant-program referral data from the Southeastern United States between January 1, 2012 and December 31, 2016. Waitlisting rate varied across the 9 Southeastern transplant programs, ranging from 10 to 22 events per 100 patient-years, whereas the program-specific waitlisting rate ratio ranged between 0.76 and 1.33. Program-specific waitlisting rate ratio was uncorrelated with the transplant rate ratio (r = -.15, 95% CI, -0.83 to 0.57). Findings warrant collection of national data on early transplant steps, such as referral, for a more comprehensive assessment of transplant program performance and pretransplant access.

Lung transplant waitlist outcomes in the United States and patient travel distance.

There is a broad range of patient travel distances to reach a lung transplant hospital in the United States. Whether patient travel distance is associated with waitlist outcomes is unknown. We present a cohort study of patients listed between January 1, 2006 and May 31, 2017 using the Scientific Registry of Transplant Recipients. Travel distance was measured from the patient's permanent zip code to the transplant hospital using shared access signature URL access to Google Maps, and assessed using multivariable competing risk regression models. There were 22 958 patients who met inclusion criteria. Median travel distance was 69.7 miles. Among patients who traveled > 60 miles, 41.2% bypassed a closer hospital and sought listing at a more distant hospital. In the adjusted models, when compared to patients who traveled ≤60 miles, patients who traveled >360 miles had a 27% lower subhazard ratio (SHR) for waitlist removal (SHR 0.73, 95% confidence interval [CI]: 0.60, 0.89, P = .002), 16% lower subhazard for waitlist death (SHR 0.84; 95% CI 0.73-0.95, P = .07), and 13% increased likelihood for transplant (SHR 1.13, 95% CI: 1.07, 1.20, P < .001). Many patients bypassed the nearest transplant hospital, and longer patient travel distance was associated with favorable waitlist outcomes.

Dialysis facility referral and start of evaluation for kidney transplantation among patients treated with dialysis in the Southeastern United States.

Variability in transplant access exists, but barriers to referral and evaluation are underexplored due to lack of national surveillance data. We examined referral for kidney transplantation evaluation and start of the evaluation among 34 857 incident, adult (18-79 years) end-stage kidney disease patients from 690 dialysis facilities in the United States Renal Data System from January 1, 2012 through August 31, 2016, followed through February 2018 and linked data to referral and evaluation data from nine transplant centers in Georgia, North Carolina, and South Carolina. Multivariable-adjusted competing risk analysis examined each outcome. The median within-facility cumulative percentage of patients referred for kidney transplantation within 1 year of dialysis at the 690 dialysis facilities in Network 6 was 33.7% (interquartile range [IQR]: 25.3%-43.1%). Only 48.3% of referred patients started the transplant evaluation within 6 months of referral. In multivariable analyses, factors associated with referral vs evaluation start among those referred at any time differed. For example, black, non-Hispanic patients had a higher rate of referral (hazard ratio [HR]: 1.22; 95% confidence interval [CI]: 1.18-1.27), but lower evaluation start among those referred (HR: 0.93; 95% CI: 0.88-0.98), vs white non-Hispanic patients. Barriers to transplant varied by step, and national surveillance data should be collected on early transplant steps to improve transplant access.

Bariatric surgery for prospective living kidney donors with obesity?

The obesity epidemic has gripped the transplant community. With nearly 40% of adults in the United States being obese (BMI ≥30 kg/m2 ) and 20% being morbidly obese (BMI ≥35 kg/m2 ), the implications for both donors and recipients of solid organs continue to grow.1 Nowhere is this more impactful than the candidacy of living kidney donors (LKDs). As increasing numbers of obese adults present for LKD consideration and evidence of inferior outcomes among obese LKDs grows, transplant surgeons will become progressively challenged by how to manage these patients in the clinic. Therefore, we offer this Personal Viewpoint to the transplant surgery community in order to review the current impact of obesity on living kidney donation, highlight what weight-loss interventions have already been attempted, and discuss the role that referral for weight-loss interventions including bariatric surgery might have going forward.

Proximity to transplant center and outcome among liver transplant patients.

In the United States, distance from liver transplant center correlates with worsened outcomes; the effects of geography elsewhere are unassessed. We performed a national registry analysis of United Kingdom listings for liver transplantation (1995-2014) and assessed whether travel time to transplant center correlates with outcome. There were 11 188 listings assessed (8490 transplanted), with a median travel time to center of 60 minutes (range 36-86). Of the national population, 3.38 × 107 (55.1%) reside ≥60 minutes from a center, and 7.65 × 106 (12.5%) >119 minutes. After competing risk analysis, increasing travel time was associated with an increased risk of death after listing (subdistribution hazard ratios relative to <60 minutes of 1.33 for 60-119 and 1.27 for >119 minutes; P < 0.001) and reduced likelihood of transplantation or recovery (0.94 and 0.86; P < 0.001). Among those transplanted, travel time was not associated with retransplant-free survival (P = 0.532). We used our model to examine optimal placement of a new center and identify a single site with a total travel time reduction of ≈10%. Our findings of disparities in accessibility of liver transplantation showed worse outcomes following listing in those distant from their transplant center, and our description of a method to model a new center complement existing data and support similar analyses of other networks.

Improved keratinocyte carcinoma outcomes with annual dermatology assessment after solid organ transplantation: Population-based cohort study.

Solid organ transplant recipients have a high risk of keratinocyte carcinoma (non-melanoma skin cancer). Consensus-based transplant guidelines recommend annual dermatological examination but the impact on skin cancer-related outcomes is unclear. We conducted a population-based, retrospective, inception cohort study using administrative health databases in Ontario, Canada to evaluate the association between adherence to annual dermatology assessments (time-varying exposure) and keratinocyte carcinoma-related morbidity and mortality after transplantation. The primary outcome was the time to first advanced (highly morbid or fatal) keratinocyte carcinoma. Among 10 183 adults receiving their first transplant from 1994 to 2012 and followed for a median of 5.44 years, 4.9% developed an advanced keratinocyte carcinoma after transplant. Adherence to annual dermatology assessments for at least 75% of the observation time after transplant was associated with a 34% reduction in keratinocyte carcinoma-related morbidity or death compared with adherence levels below 75% (adjusted hazard ratio 0.66, 95% CI 0.48-0.92). Adherence levels were universally low (median proportion of time spent in adherence 0%, inter-quartile range 0-27%). Only 45% of transplant recipients had ever seen a dermatologist and 2.1% were fully adherent during the entire observation period. Strategies are needed to improve adherence rates in order to help decrease long-term morbidity after transplant.

Specific issues concerning the management of patients on the waiting list and after liver transplantation.

The present document is a second contribution collecting the recommendations of an expert panel of transplant hepatologists appointed by the Italian Association for the Study of the Liver (AISF) concerning the management of certain aspects of liver transplantation, including: the issue of prompt referral; the management of difficult candidates; malnutrition; living related liver transplants; hepatocellular carcinoma; and the role of direct acting antiviral agents before and after transplantation. The statements on each topic were approved by participants at the AISF Transplant Hepatology Expert Meeting organized by the Permanent Liver Transplant Commission in Mondello on 12-13 May 2017. They are graded according to the GRADE grading system.

Completion of community health worker initiated patient referrals in integrated community case management in rural Uganda.

BACKGROUND: Uganda has sought to address leading causes of childhood mortality: malaria, pneumonia and diarrhoea, through integrated community case management (iCCM). The success of this approach relies on community health worker (CHW) assessment and referral of sick children to a nearby health centre. This study aimed to determine rates of referral completion in an iCCM programme in rural Uganda. METHODS: This was a prospective observational study of referrals made by CHWs in 8 villages in rural western Uganda. All patient referrals by CHWs were tracked and health centre registers were reviewed for documentation of completed referrals. Caregivers of referred patients were invited to complete a survey 2-3 weeks after the referral with questions on the CHW visit, referral completion, and the patient's clinical condition. RESULTS: Among 143 total referrals, 136 (94%) caregivers completed the follow-up survey. Reasons for visiting the CHW were fever/malaria in 111 (82%) cases, cough in 61 (45%) cases, and fast/difficult breathing in 25 (18%) cases. Overall, 121 (89%) caregivers reported taking the referred child for further medical evaluation, of whom 102 (75% overall) were taken to the local public health centre. Ninety per cent of reported referral visits were confirmed in health centre documentation. For the 34 caregivers who did not complete referral at the local health centre, the most common reasons were improvement in child's health, lack of time, ease of going elsewhere, and needing to care for other children. Referrals were slightly more likely to be completed on weekdays versus weekends (p = 0.0377); referral completion was otherwise not associated with child's age or gender, caregiver age, or caregiver relationship to child. One village had a lower rate of referral completion than the others. Improvement in the child's health was not associated with completed referral or timing of the referral visit. CONCLUSIONS: A high percentage of children referred to the health centre through iCCM in rural Uganda completed the referral. Barriers to referral completion included improvement in the child's health, time and distance. Interestingly, referral completion at the health centre was not associated with improvement in the child's health. Barriers to referral completion and clinical management at all stages of referral linkages warrant further study.

Improved Time to Notification of Impending Brain Death and Increased Organ Donation Using an Electronic Clinical Decision Support System.

Early referral of patients to an organ procurement organization (OPO) may positively affect donation outcomes. We implemented an electronic clinic decision support (CDS) system to automatically notify our OPO of children meeting clinical triggers indicating impending brain death. Medical records of all patients who died in a pediatric critical care unit or were referred for imminent death for 3 years prior to installation of the initial CDS (pre-CDS) and for 1 year after implementation of the final CDS (post-CDS) were reviewed. Mean time to OPO notification decreased from 30.2 h pre-CDS to 1.7 h post-CDS (p = 0.015). Notification within 1 h of meeting criteria increased from 36% pre-CDS to 70% post-CDS (p = 0.003). Although an increase in donor conversion from 50% pre-CDS to 90% post-CDS did not reach statistical significance (p = 0.0743), there were more organ donors post-CDS (11 of 24 deaths) than pre-CDS (seven of 57 deaths; p = 0.002). Positive outcomes were achieved with the use of a fully automated CDS system while simultaneously realizing few false-positive notifications, low costs, and minimal workflow interruption. Use of an electronic CDS system in a pediatric hospital setting improved timely OPO notification and was associated with increased organ donation.

Simulated Regionalization of Heart and Lung Transplantation in the United States.

We simulated the impact of regionalization of isolated heart and lung transplantation within United Network for Organ Sharing (UNOS) regions. Overall, 12 594 orthotopic heart transplantation (OHT) patients across 135 centers and 12 300 orthotopic lung transplantation (OLT) patients across 67 centers were included in the study. An algorithm was constructed that "closed" the lowest volume center in a region and referred its patients to the highest volume center. In the unadjusted analysis, referred patients were assigned the highest volume center's 1-year mortality rate, and the difference in deaths per region before and after closure was computed. An adjusted analysis was performed using multivariable logistic regression using recipient and donor variables. The primary outcome was the potential number of lives saved at 1 year after transplant. In adjusted OHT analysis, 10 lives were saved (95% confidence interval [CI] 9-11) after one center closure and 240 lives were saved (95% CI 209-272) after up to five center closures per region, with the latter resulting in 1624 total patient referrals (13.2% of OHT patients). For OLT, lives saved ranged from 29 (95% CI 26-32) after one center closure per region to 240 (95% CI 224-256) after up to five regional closures, but the latter resulted in 2999 referrals (24.4% of OLT patients). Increased referral distances would severely limit access to care for rural and resource-limited populations.

Bayesian exponential random graph modelling of interhospital patient referral networks.

Using original data that we have collected on referral relations between 110 hospitals serving a large regional community, we show how recently derived Bayesian exponential random graph models may be adopted to illuminate core empirical issues in research on relational coordination among healthcare organisations. We show how a rigorous Bayesian computation approach supports a fully probabilistic analytical framework that alleviates well-known problems in the estimation of model parameters of exponential random graph models. We also show how the main structural features of interhospital patient referral networks that prior studies have described can be reproduced with accuracy by specifying the system of local dependencies that produce - but at the same time are induced by - decentralised collaborative arrangements between hospitals. Copyright © 2017 John Wiley & Sons, Ltd.

Reassessing risks and benefits of living kidney donors with a history of thyroid cancer.

Many potential and willing living kidney donors are excluded from donating for a history of malignancy. There is appropriate caution toward patients with a history of malignancy because of concern for transmission of donor-derived malignancy. Thyroid cancer is common and increasing in incidence, and outcomes are very good in otherwise young, healthy potential donors. We review the evidence and guidelines regarding recurrence and transmission risk of thyroid cancer, and then we suggest a standardized guideline for otherwise healthy donors with a history of thyroid malignancy.

Development of simulation optimization methods for solving patient referral problems in the hospital-collaboration environment.

This research studied a patient referral problem among multiple cooperative hospitals for sharing imaging services' referrals. The proposed problem consisted of many types of patients and the uncertainty associated with the number of patients of each type, patients' arrival time, and patients' medical operation time, leading to a difficulty in finding solutions due to the uncertain environment. This research used system simulation to construct a model and develop a simulation optimization method, combining the heuristic algorithm (patient referral mechanism) with the particle swarm optimization (PSO) method, to determine a better way to refer patients from one hospital (referring hospital) to another (recipient hospital) to receive certain imaging services. After the simulated model was verified and validated, three patient referral mechanisms to dispatch referring patients to the appropriate recipient hospitals were proposed. Based on the numerical results, the findings showed that Mechanism 2, transferring patients to the hospital with the shortest waiting time, had good performance in both scenarios: allowing patient referrals among all hospitals and limiting the patients' waiting time. Finally, this study presents the conclusions and some directions for future research.

Pancreas Transplantation: An Alarming Crisis in Confidence.

In the past decade, the annual number of pancreas transplantations performed in the United States has steadily declined. From 2004 to 2011, the overall number of simultaneous pancreas-kidney (SPK) transplantations in the United States declined by 10%, whereas the decreases in pancreas after kidney (PAK) and pancreas transplant alone (PTA) procedures were 55% and 34%, respectively. Paradoxically, this has occurred in the setting of improvements in graft and patient survival outcomes and transplanting higher-risk patients. Only 11 centers in the United States currently perform ≥20 pancreas transplantations per year, and most centers perform <5 pancreas transplantations annually; many do not perform PAKs or PTAs. This national trend in decreasing numbers of pancreas transplantations is related to a number of factors including lack of a primary referral source, improvements in diabetes care and management, changing donor and recipient considerations, inadequate training opportunities, and increasing risk aversion because of regulatory scrutiny. A national initiative is needed to "reinvigorate" SPK and PAK procedures as preferred transplantation options for appropriately selected uremic patients taking insulin regardless of C-peptide levels or "type" of diabetes. Moreover, many patients may benefit from PTAs because all categories of pancreas transplantation are not only life enhancing but also life extending procedures.

Role of Patient Factors and Practice Patterns in Determining Access to Liver Waitlist.

Geographic variability in access to care is a persistent challenge in transplantation. Little is known about how patients with end-stage liver disease are chosen for referral, evaluation and listing. Utilizing death certificate data from the Centers for Disease Control and Prevention from 2002 to 2009, estimated liver demand (ELD) was measured by aggregating annual deaths from liver disease and liver transplants performed in each donor service area (DSA). In DSAs with higher ELD, more patients per capita were listed for transplantation (p < 0.001). In addition, listing rates per ELD varied fivefold across DSAs, with more patients per ELD being transplanted in DSAs with higher listing rates (p < 0.001). After adjusting for liver donor risk index and MELD at transplant, there was no association between listing rate and posttransplant survival (HR 1.002, p = 0.77). In addition, DSAs with lower listing rates were more likely to export organs (p < 0.001) of lower liver donor risk index (p < 0.001). Listing sicker patients was associated with increased access to the waitlist and transplantation and more efficient organ utilization, but had minimal effect on posttransplant outcomes after adjusting for the resulting organ shortage.