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Int. J. Neonatal Screen. 2018, 4(2), 18; https://doi.org/10.3390/ijns4020018

Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results

1
Department of Pediatrics, Endocrinology, University of Louisville, Louisville, KY 40202, USA
2
Department of Pediatrics, Endocrinology, Indiana University, Indianapolis, IN 46202, USA
3
Michigan Department of Community Health, Lansing, MI 48933, USA
4
Minnesota Department of Health, St. Paul, MN 55155, USA
5
Children’s Hospitals and Clinics of Minnesota, St. Paul, MN 55102, USA
6
Department of Pediatrics, Endocrinology, University of Michigan, Ann Arbor, MI 48109, USA
7
Ohio Department of Health Laboratory, Reynoldsburg, OH 43068, USA
8
Department of Pediatrics, Endocrinology, College of Medicine, University of Cincinnati, Cincinnati, OH 45229, USA
9
Region 4 Midwest Genetics Collaborative, Michigan Public Health Institute, Okemos, MI 48864, USA
*
Author to whom correspondence should be addressed.
Received: 8 May 2018 / Revised: 8 June 2018 / Accepted: 11 June 2018 / Published: 17 June 2018
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Abstract

To identify the 3-year follow-up management and education patterns of primary care clinicians and pediatric endocrinologists for children diagnosed with congenital hypothyroidism (CH) through newborn screening programs, the Region 4 Midwest Genetics Collaborative, made up of seven regional states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin), performed a survey study of parents and physicians caring for children identified with CH. The clinicians and parents of 409 children with CH regionally identified in 2007 were invited to participate in a voluntary survey. Responses relating to treatment, monitoring practices, educational resources, genetic counseling, and services provided/received were collected from 214 clinicians and 77 parents. In total, 99% had undergone a confirmatory test following positive newborn screening and 55% had imaging at diagnosis, but only 50% were identified as having the etiology identified. Thyroid withdrawal challenge testing was the choice method for re-evaluating thyroid function, but the approach varied. Clinician and parent responses to education and genetic counseling also differed. Clinicians report face-to-face education as the most common method, with less than 50% providing handouts to patients. Only 14% of patients were referred to a genetics counselor. Of parents reporting on their educational experience, 86% received face-to-face education from a pediatric endocrinologist and 4% received education from a genetic counselor. Only 65%, however, were satisfied with their education. These survey data suggest a lack of a standardized approach to diagnosis, follow-up, education, and genetic counseling. This collaborative effort provides insight into developing three-year follow-up, education and genetic counseling guidelines for children diagnosed with CH. View Full-Text
Keywords: congenital hypothyroidism; thyroid; newborn; neonatal; screening congenital hypothyroidism; thyroid; newborn; neonatal; screening
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Wintergerst, K.A.; Eugster, E.; Andruszewski, K.; Kleyn, M.; Vanderburg, N.; Sockalosky, J.; Menon, R.; Linard, S.; Kingery, S.; Rose, S.R.; Moore, J.; Gembel, G.; Gorman, L. Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results. Int. J. Neonatal Screen. 2018, 4, 18.

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