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Full-Text Articles in Medicine and Health Sciences
Improving Communication Between Doctors And Parents After Newborn Screening, Michael Farrell, Stephanie Christopher, Audrey Tluczek, Karen Kennedy-Parker, Alison La Pean, Kerry Eskra, Jenelle Collins, Gary Hoffman, Julie Panepinto, Philip M. Farrell
Improving Communication Between Doctors And Parents After Newborn Screening, Michael Farrell, Stephanie Christopher, Audrey Tluczek, Karen Kennedy-Parker, Alison La Pean, Kerry Eskra, Jenelle Collins, Gary Hoffman, Julie Panepinto, Philip M. Farrell
College of Professional Studies Faculty Research and Publications
Background: Newborn screening (NBS) enables early treatment, and some consider it a natural vehicle for genetic screening. Bioethicists argue for caution since families of infants with carrier status can develop psychosocial complications. This paper describes the methods and feasibility of Wisconsin’s statewide project for quality improvement of communication and psychosocial outcomes after NBS.
Methods: When NBS identifies carrier status for cystic fibrosis or sickle cell, we contact primary care providers (PCPs), answer questions, and invite them to rehearse informing the parents. Three months later, we telephone the parents, assess knowledge and psychosocial outcomes, provide counseling, and assist with self-referral to …