366* Cystic fibrosis newborn screening: facilitating family centred care
نویسندگان
چکیده
منابع مشابه
Feature: Newborn Screening for Cystic Fibrosis
Cystic Fibrosis is an autosomal recessive disease affecting the exocrine glands of the lung, liver, pancreas and intestines. It leads to a diverse range of clinical problems. Although most patients have multiple organs involved, pulmonary disease is the principal cause of both morbidity and mortality in the majority of patients. Cystic Fibrosis is the result of abnormalities in the gene that co...
متن کاملNewborn Screening for Cystic Fibrosis in California.
OBJECTIVES This article describes the methods used and the program performance results for the first 5 years of newborn screening for cystic fibrosis (CF) in California. METHODS From July 16, 2007, to June 30, 2012, a total of 2,573,293 newborns were screened for CF by using a 3-step model: (1) measuring immunoreactive trypsinogen in all dried blood spot specimens; (2) testing 28 to 40 select...
متن کاملAccess to Primary Care and Subspecialty Care After Positive Cystic Fibrosis Newborn Screening.
PROBLEM CONSIDERED Accessibility by telephone to cystic fibrosis (CF) centers for a diagnostic sweat test appointment from a parental perspective—which can be stressful—compared to experience in contacting a general pediatrics practice in the same area. METHODS We called each CF center and affiliate twice, plus a sample of multiphysician general pediatrics practices selected from yellowpages....
متن کاملFamily‐centred care in cystic fibrosis: a pilot study in North Queensland, Australia
AIMS The aims were to: (i) examine perceptions of family-centred care of parents of children with cystic fibrosis and healthcare professionals who care for them; (ii) test design and tools in a regional population. DESIGN Quantitative pilot study of existing questionnaire. METHODS The methods involved were comparative, cross-sectional survey of parents of children with cystic fibrosis and h...
متن کاملGuidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop report.
Newborn screening for cystic fibrosis offers the opportunity for early intervention and improved outcomes. This summary, resulting from a workshop sponsored by the Cystic Fibrosis Foundation to facilitate implementation of widespread high quality cystic fibrosis newborn screening, outlines the steps necessary for success based on the experience of existing programs. Planning should begin with a...
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ژورنال
عنوان ژورنال: Journal of Cystic Fibrosis
سال: 2011
ISSN: 1569-1993
DOI: 10.1016/s1569-1993(11)60378-0