Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results
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 (I...
| Main Authors: | , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2018-06-01
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| Series: | International Journal of Neonatal Screening |
| Subjects: | |
| Online Access: | http://www.mdpi.com/2409-515X/4/2/18 |
| _version_ | 1818269831381647360 |
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| author | Kupper A. Wintergerst Erica Eugster Karen Andruszewski Mary Kleyn Nancy Vanderburg Joe Sockalosky Ram Menon Sharon Linard Suzanne Kingery Susan R. Rose Julie Moore Gina Gembel Lisa Gorman |
| author_facet | Kupper A. Wintergerst Erica Eugster Karen Andruszewski Mary Kleyn Nancy Vanderburg Joe Sockalosky Ram Menon Sharon Linard Suzanne Kingery Susan R. Rose Julie Moore Gina Gembel Lisa Gorman |
| author_sort | Kupper A. Wintergerst |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-12T21:00:38Z |
| format | Article |
| id | doaj.art-cb29f24fce2641728231cea99c582e33 |
| institution | Directory Open Access Journal |
| issn | 2409-515X |
| language | English |
| last_indexed | 2024-12-12T21:00:38Z |
| publishDate | 2018-06-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | International Journal of Neonatal Screening |
| spelling | doaj.art-cb29f24fce2641728231cea99c582e332022-12-22T00:12:09ZengMDPI AGInternational Journal of Neonatal Screening2409-515X2018-06-01421810.3390/ijns4020018ijns4020018Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative ResultsKupper A. Wintergerst0Erica Eugster1Karen Andruszewski2Mary Kleyn3Nancy Vanderburg4Joe Sockalosky5Ram Menon6Sharon Linard7Suzanne Kingery8Susan R. Rose9Julie Moore10Gina Gembel11Lisa Gorman12Department of Pediatrics, Endocrinology, University of Louisville, Louisville, KY 40202, USADepartment of Pediatrics, Endocrinology, Indiana University, Indianapolis, IN 46202, USAMichigan Department of Community Health, Lansing, MI 48933, USAMichigan Department of Community Health, Lansing, MI 48933, USAMinnesota Department of Health, St. Paul, MN 55155, USAChildren’s Hospitals and Clinics of Minnesota, St. Paul, MN 55102, USADepartment of Pediatrics, Endocrinology, University of Michigan, Ann Arbor, MI 48109, USAOhio Department of Health Laboratory, Reynoldsburg, OH 43068, USADepartment of Pediatrics, Endocrinology, University of Louisville, Louisville, KY 40202, USADepartment of Pediatrics, Endocrinology, College of Medicine, University of Cincinnati, Cincinnati, OH 45229, USARegion 4 Midwest Genetics Collaborative, Michigan Public Health Institute, Okemos, MI 48864, USARegion 4 Midwest Genetics Collaborative, Michigan Public Health Institute, Okemos, MI 48864, USARegion 4 Midwest Genetics Collaborative, Michigan Public Health Institute, Okemos, MI 48864, USATo 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.http://www.mdpi.com/2409-515X/4/2/18congenital hypothyroidismthyroidnewbornneonatalscreening |
| spellingShingle | Kupper A. Wintergerst Erica Eugster Karen Andruszewski Mary Kleyn Nancy Vanderburg Joe Sockalosky Ram Menon Sharon Linard Suzanne Kingery Susan R. Rose Julie Moore Gina Gembel Lisa Gorman Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results International Journal of Neonatal Screening congenital hypothyroidism thyroid newborn neonatal screening |
| title | Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results |
| title_full | Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results |
| title_fullStr | Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results |
| title_full_unstemmed | Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results |
| title_short | Congenital Hypothyroidism 3-Year Follow-Up Project: Region 4 Midwest Genetics Collaborative Results |
| title_sort | congenital hypothyroidism 3 year follow up project region 4 midwest genetics collaborative results |
| topic | congenital hypothyroidism thyroid newborn neonatal screening |
| url | http://www.mdpi.com/2409-515X/4/2/18 |
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