Organ donation: a pastoral care model.

Reports the development and implementation of one academic medical center's comprehensive program to increase organ donation rates. Describes a systematic program of family care and communication with special attention to the role of pastoral care. Data demonstrate a positive impact on consent and donation rates in the program's second year. Results suggest factors which impact consent and donation rates.

Family communication coordination: a program to increase organ donation.

To improve organ donation performance, the Medical College of Virginia Hospitals implemented a comprehensive family support and communication program, consisting of a standard family communications protocol, a hospital-based team from the Department of Pastoral Care, targeted staff education, and an ongoing quality assurance measuring and monitoring system. The 3 best-demonstrated request practices, private setting, "decoupling," and collaboration in the request between the organ procurement organization and hospital staff, were incorporated into the program. Improvement in the consent and donation rate was evident in the second calendar year of the program; the consent rate was 72% and the donation rate was 50%. During the second year, there was also a positive correlation between "decoupling," appropriate requestor, and the consent rate. Implementation of a hospital-based team and a standard protocol facilitated the clarification of roles and responsibilities toward clearer and more consistent family communication and support. Data suggest that staff experience is a major contributor to a positive donation outcome.

Development of the Virginia Congenital Anomalies Reporting and Education System (VaCARES): two pilot projects.

In 1986 legislation established the Virginia Congenital Anomalies Reporting and Education System (VaCARES). The system has three goals: to collect data that can be used to evaluate possible causes of congenital anomalies, to improve diagnosis and treatment, and to let parents and physicians know what resources are available to aid children born with anomalies. All children (from birth to age 2) with congenital anomalies admitted to Virginia hospitals after January 1, 1987, are being reported to VaCARES; VaCARES then contacts their families and physicians. Before the system was implemented statewide, its procedures were thoroughly tested through two pilot projects in selected hospitals. During the pilots, it was concluded that birth certificates alone are inadequate for case ascertainment. According to hospital reports, the incidence of all congenital anomalies during Pilot II was 562 out of 10,034 births (5.6%); birth certificates showed an incidence of only 83 out of 10,034 births (0.8%). During Pilot I, 3,466 (73.8%) of the diagnoses reported were perinatal conditions; the list of reportable conditions was accordingly altered, reducing perinatal conditions reported in Pilot II to 5 diagnoses (0.4%). It was estimated that there will be about 5000 to 7000 reports submitted to VaCARES each year. It was also shown that parents should be sent general rather than specific information about their child's birth defect and that quality control and close contact with reporting hospitals are essential to maintain the integrity of the registry data.

Term stillbirth: causes and potential for prevention in Virginia.

Term fetal deaths occurring in Virginia in 1983 were reviewed to determine potential preventability. During this period, 52 (48%) of 108 such deaths were judged preventable. The leading cause of preventable antepartum death was maternal hypertension, followed by diabetes, inadequate fetal surveillance, and postterm pregnancy. The major cause of intrapartum fetal death was long delay between the onset of obvious fetal compromise and delivery. The incidence of preventable term stillbirth seemed inversely proportional to hospital size.

Neonatal screening for biotinidase deficiency: results of a 1-year pilot study.

We screened 81,243 infants born in Virginia during the 1-year period beginning Jan. 24, 1984, for deficiency of the enzyme biotinidase. A simple colorimetric screening procedure was used to detect the presence or absence of biotinidase activity on the same blood-soaked filter paper cards that are currently used in most neonatal metabolic screening programs. Two newborn infants with biotinidase deficiency were identified during the 12-month pilot study. In addition, two affected siblings of one of the newborn infants were detected through secondary family screening. On the basis of these results, the disorder appears to be at least as frequent as several others for which newborn screening is currently conducted. There were no known false-negative test results, and only 0.09% false-positive results that necessitated requests for second blood samples. False-positive test results can be readily identified by the use of a quantitative assay, which can also be used to confirm the diagnosis and to detect heterozygous family members in the case of true positives. On the basis of currently recognized criteria, biotinidase deficiency should be considered for inclusion among the metabolic disorders for which screening is performed in the neonatal period.