Ten years of donor-derived disease: A report of the disease transmission advisory committee.

Despite clinical and laboratory screening of potential donors for transmissible disease, unexpected transmission of disease from donor to recipient remains an inherent risk of organ transplantation. The Disease Transmission Advisory Committee (DTAC) was created to review and classify reports of potential disease transmission and use this information to inform national policy and improve patient safety. From January 1, 2008 to December 31, 2017, the DTAC received 2185 reports; 335 (15%) were classified as a proven/probable donor transmission event. Infections were transmitted most commonly (67%), followed by malignancies (29%), and other disease processes (6%). Forty-six percent of recipients receiving organs from a donor that transmitted disease to at least 1 recipient developed a donor-derived disease (DDD). Sixty-seven percent of recipients developed symptoms of DDD within 30 days of transplantation, and all bacterial infections were recognized within 45 days. Graft loss or death occurred in about one third of recipients with DDD, with higher rates associated with malignancy transmission and parasitic and fungal diseases. Unexpected DDD was rare, occurring in 0.18% of all transplant recipients. These findings will help focus future efforts to recognize and prevent DDD.

Renal cell carcinoma suspected at time of organ donation 2008-2016: A report of the OPTN ad hoc Disease Transmission Advisory Committee Registry.

All 179 reports to the OPTN of potential renal cell carcinoma (RCC) transmission from 1/1/2008 through 12/31/2016 were reviewed. Cases were divided into those with donor tumor known or suspected at time of transplant (N = 147 donors), and those in which tumor was initially found after transplant (N = 32). We sought to understand the risk of transplanting either the affected kidney, the contralateral kidney or non-renal organs from donors with a suspected/confirmed unilateral RCC. In the case of RCC found prior to transplant, transplantation of 21 kidneys following excision of tumor, 47 contralateral kidneys and 198 non-renal organs was performed. No cases of RCC transmission were documented in this population. An additional six cases of live donor kidney transplantation involving resection of RCC were reported, also without transmission. Six of 9 other recipients in whom the diagnosis of RCC became available after implantation underwent allograft nephrectomy and 3 received tumor resection. No recurrent RCC was documented. Given the low rate of transmission and available treatment options, consideration should be given to judicious use of organs from donors with small solitary RCC.

Donor-derived hepatitis C in the era of increasing intravenous drug use: A report of the Disease Transmission Advisory Committee.

The opioid epidemic has resulted in a potential increase in donors in the testing window period for hepatitis C virus (HCV). We analyzed HCV reports to the Disease Transmission Advisory Committee (DTAC) between 2008 and 2016 to estimate the risk of HCV transmission. In 15 of 95 (16%) reports, at least one recipient developed proven/probable donor-derived HCV resulting in 32 infected recipients. Seven transmissions occurred during the nucleic acid testing (NAT) window period; four occurred during serological window period. The other four transmission occurred due to human error (3) and false-negative serology (1). All seronegative-exposed liver and lung recipients contracted HCV; 18/21 (86%) kidney and 3/4 (75%) heart recipients developed HCV. Four transmitting donors died of intravenous drug overdose, three in 2016 and one in 2012. Among donors with a history of intravenous drug use (IVDU), drug intoxication as a mechanism of death, or increased risk status, and negative screening HCV testing, the risk of transmission to a recipient was about 1 in 1000. The overall risk of transmitting HCV from NAT-negative donors with IVDU is low and consistent with modeling data. This information may be helpful to clinicians counseling potential recipients offered these organs.

Evolution of an integrated public health surveillance system.

There is a growing recognition in maternal and child health of the importance of social, behavioral, biological, and genetic factors across the entire life course. Unfortunately, most state maternal and child health surveillance systems are not designed to readily address longitudinal research questions or track and follow children across multiple programs over time. The Virginia Department of Health (VDH) recently integrated its birth defects registry, newborn hearing screening tracking and management system, and electronic birth certificate (EBC) into a robust, Web-based surveillance system called the Virginia Vital Events and Screening Tracking System (VVESTS). Completely redesigning the existing birth defects and newborn hearing screening system (the Virginia Infant Screening and Infant Tracking System--VISITS I) with minimal disruption of ongoing reporting presented a number of challenges. Because VVESTS had different requirements such as required fields and data validations, extensive data preparation was required to ensure that existing VISITS I data would be included in the new system (VISITS II). Efforts included record deduplication, conversion of free text fields into discrete variables, dealing with missing/invalid data, and linkage with birth certificate data. VISITS II serves multiple program needs; improves data quality and security; automates linkages within families, across programs, and over time; and improves the ability of VDH to provide children with birth defects and their families necessary follow-up services and enhanced care coordination.

Disparities in the Clinical Encounter: Virginia's African American Children with Special Health Care Needs.

This study analyzed Virginia data from the most recent National Survey of Children with Special Health Care Needs. Logistic regression models were run for six Maternal and Child Health Bureau core outcomes and included demographics, child characteristics, health care providers, and health care access variables as predictors. Race/ethnicity disparities were judged to be present if the race/ethnicity variable was a significant predictor in the final model. Examining the components of disparate outcomes, African American children were found to be less likely than their white counterparts to have a usual source for sick and preventive care and to have a personal doctor or nurse. Their parents were less likely to say that doctors spent enough time, listened carefully, were sensitive to values and customs, and made them feel like a partner. These findings emphasize the need to examine health care disparities at a state level in order to guide efforts at remediation.

Defining underinsurance among children with special health care needs: a Virginia sample.

OBJECTIVES: The study sought to: 1) examine the national Children with Special Health Care Needs (CSHCN) survey to determine whether there are items that can serve to operationalize alternative definitions of underinsurance; 2) construct definitions from the survey items that are consistent with Structural and Economic definitions of underinsurance and devise an algorithm for determining underinsurance for each; and 3) compare these two underinsurance definitions with the Maternal and Child Health definition of inadequate insurance, a definition that takes an Attitudinal approach to the construct. METHODS: Analyses included Virginia children who were insured throughout the survey period. Survey items from the national CSHCN survey were examined to identify items related to underinsurance. Items were divided into groups corresponding to three definitions of insurance (Attitudinal, Structural, and Economic). Algorithms were established, and underinsurance rates calculated for each definition. Logistic regression models were constructed to investigate demographic characteristics related to underinsurance. RESULTS: Different percentages of Virginia CSHCN were found to be underinsured based on the definitions of Attitudinal (28.9%), Economic (25.6%), and Structural (2.9%). Eight demographic characteristics and the pervasiveness of the child's special health care needs were examined in relation to underinsurance. For the Attitudinal definition, poverty level and pervasiveness were significant predictors in the model. In the model predicting Economic underinsurance status, pervasiveness and three of the demographic characteristics significantly predicted underinsurance status. In the multivariate logistic regression model for the Structural definition, none of the predictors was significantly related to underinsurance. CONCLUSIONS: These findings demonstrate that alternative definitions of underinsurance yield dramatically different underinsurance rates. Further, even when yielding similar rates, alternative definitions may identify substantially different sets of children. The likelihood of being underinsured has a strong association with low-income status and pervasiveness of the child's special health care needs. Understanding these factors and their implications will be important when planning accessible and comprehensive health plans and care systems for CSHCN.