ABSTRACT
Abstract Objective: To analyze the performance of the cystic fibrosis (CF) newborn screening (NBS) program over its first five years in a Brazilian northeastern state. Methods: A population-based study using a screening algorithm based on immunoreactive trypsinogen (IRT)/IRT. Data were retrieved from the state referral screening center registry. The program performance was evaluated using descriptive indicators such as the results of an active search, coverage, newborn's age at the time of blood sampling, the time between sample collection and its arrival at the laboratory, and the child's age at diagnosis of disease. Results: The public CF screening program covered 82.6% of the 1,017,576 births that occurred, with an accumulated five-year incidence of 1:20,767 live births. The median (25th-75th) age at diagnosis was 3.5 (2.3-7.3) months. The sampling before 7 days of life for the first IRT (IRT1) increased between 2013 and 2017 from 42.2 to 48.3%. Around 5% of IRT1 samples and 30% of the second samples were collected after 30 days of life. In the first and second stages of screening, 23.6% and 19.9% of the infants, respectively, were lost to follow-up. In both stages of screening, the samples were retained at the health units for a median (25th-75th) of 9.0 (7.0-13.0) days. Conclusions: The coverage by the CF-NBS program was satisfactory as compared to other Brazilian state rates and the percentage of IRT1 samples collected within the first week of life increased progressively. However, time of samples retention at the health units, inappropriate sampling, inherent methodological problems, and loss of follow-up need to improve.
ABSTRACT
OBJECTIVE: To analyze the performance of the cystic fibrosis (CF) newborn screening (NBS) program over its first five years in a Brazilian northeastern state. METHOD: A population-based study using a screening algorithm based on immunoreactive trypsinogen (IRT)/IRT. Data were retrieved from the state referral screening center registry. The program performance was evaluated using descriptive indicators such as the results of an active search, coverage, newborn's age at the time of blood sampling, the time between sample collection and its arrival at the laboratory, and the child's age at diagnosis of disease. RESULTS: The public CF screening program covered 82.6% of the 1,017,576 births that occurred, with an accumulated five-year incidence of 1:20,767 live births. The median (25th-75th) age at diagnosis was 3.5 (2.3-7.3) months. The sampling before 7 days of life for the first IRT (IRT1) increased between 2013 and 2017 from 42.2 to 48.3%. Around 5% of IRT1 samples and 30% of the second samples were collected after 30 days of life. In the first and second stages of screening, 23.6% and 19.9% of the infants, respectively, were lost to follow-up. In both stages of screening, the samples were retained at the health units for a median (25th-75th) of 9.0 (7.0-13.0) days. CONCLUSIONS: The coverage by the CF-NBS program was satisfactory as compared to other Brazilian state rates and the percentage of IRT1 samples collected within the first week of life increased progressively. However, time of samples retention at the health units, inappropriate sampling, inherent methodological problems, and loss of follow-up need to improve.
Subject(s)
Cystic Fibrosis , Genetic Testing , Humans , Infant , Infant, Newborn , Brazil/epidemiology , Cystic Fibrosis/diagnosis , Cystic Fibrosis/genetics , Cystic Fibrosis Transmembrane Conductance Regulator/genetics , Genetic Testing/methods , Neonatal Screening/methods , TrypsinogenABSTRACT
The demand for expanded knowledge and accountability in critical care nursing has increased the need for qualified critical care nurses and is tempered by requirements that their preparation be cost-effective. The Emory University School of Nursing (EUSN) has pioneered in meeting this challenge. Since June 1988, a Critical Care Consortium consisting of the EUSN and Emory-affiliated hospitals has been operational, providing uniform critical care education to multiple hospital nursing staffs. Instructional resources are being economically utilized, eliminating duplication of efforts. This collaboration between academic and service settings enhances productivity, quality patient care, professional growth, and promotes significantly greater interinstitutional cohesiveness.
Subject(s)
Critical Care , Education, Nursing, Continuing , Curriculum , Evaluation Studies as Topic , Faculty, Nursing , GeorgiaABSTRACT
Advanced technology has created various means to prolong life, along with the supposed obligation to use those technologies. Often costly, these technologies may have little or no impact on the outcomes of illness. When and how that technology should be used may result in conflict. By writing a living will, some persons have said "Thanks, but no thanks" to the use of these technologies. Many healthcare professionals, however, are reluctant, because of misinformation or fear of litigation, to respect consumers' rejection of the offer of prolonged life at all costs. An examination of the legal, ethical and emotional aspects of NDAs and living wills may provide some guidelines for dealing with the conflicts encountered in practice. In addition, an awareness of personal feelings may clarify some of the gray areas involved in living wills and assist healthcare professionals to make decisions about Natural Death Acts.
