Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok)
Neonatal screening for congenital primary hypothyroidism (CH) is mandatory in Germany but medical care thereafter remains inconsistent. Therefore, the registry HypoDok of the German Society of Pediatric Endocrinology and Diabetology (DGKED) was analyzed to evaluate the implementation of evidence-bas...
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-02-01
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| Series: | International Journal of Neonatal Screening |
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| Online Access: | https://www.mdpi.com/2409-515X/7/1/10 |
| _version_ | 1797396758559457280 |
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| author | Julia Thomann Sascha R. Tittel Egbert Voss Rudolf Oeverink Katja Palm Susanne Fricke-Otto Klaus Kapelari Reinhard W. Holl Joachim Woelfle Markus Bettendorf |
| author_facet | Julia Thomann Sascha R. Tittel Egbert Voss Rudolf Oeverink Katja Palm Susanne Fricke-Otto Klaus Kapelari Reinhard W. Holl Joachim Woelfle Markus Bettendorf |
| author_sort | Julia Thomann |
| collection | DOAJ |
| description | Neonatal screening for congenital primary hypothyroidism (CH) is mandatory in Germany but medical care thereafter remains inconsistent. Therefore, the registry HypoDok of the German Society of Pediatric Endocrinology and Diabetology (DGKED) was analyzed to evaluate the implementation of evidence-based guidelines and to assess the number of included patients. Inclusion criteria were (i) date of birth between 10/2001 and 05/2020 and (ii) increased thyroid-stimulating hormone (TSH) at screening and/or confirmation. The cohort was divided into before (A) and after (B) guideline publication in 02/2011, to assess the guideline’s influence on medical care. A total of 659 patients were analyzed as group A (<i>n</i> = 327) and group B (<i>n</i> = 332) representing 17.5% and 10.3% of CH patients identified in the German and Austrian neonatal screening program during the respective time period. Treatment start and thyroxine doses were similar in both groups and consistent with recommendations. Regular follow-ups were documented. In the first three years of life, less than half of the patients underwent audiometry; developmental assessment was performed in 49.3% (A) and 24.8% (B) (<i>p</i> < 0.01). Documentation of CH patient care by pediatric endocrinologists seemed to be established, however, it reflected only a minority of the affected patients. Therefore, comprehensive documentation as an important instrument of quality assurance and evidence-based medicine should be legally enforced and officially funded in order to record, comprehend, and optimize care and outcome in patients with rare diseases such as CH. |
| first_indexed | 2024-03-09T00:56:00Z |
| format | Article |
| id | doaj.art-c56d350f3e6c4f06b11e06020d8aa134 |
| institution | Directory Open Access Journal |
| issn | 2409-515X |
| language | English |
| last_indexed | 2024-03-09T00:56:00Z |
| publishDate | 2021-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | International Journal of Neonatal Screening |
| spelling | doaj.art-c56d350f3e6c4f06b11e06020d8aa1342023-12-11T16:54:12ZengMDPI AGInternational Journal of Neonatal Screening2409-515X2021-02-01711010.3390/ijns7010010Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok)Julia Thomann0Sascha R. Tittel1Egbert Voss2Rudolf Oeverink3Katja Palm4Susanne Fricke-Otto5Klaus Kapelari6Reinhard W. Holl7Joachim Woelfle8Markus Bettendorf9Division of Paediatric Endocrinology and Diabetes, University Children’s Hospital Heidelberg, 69120 Heidelberg, GermanyInstitute of Epidemiology and Medical Biometry, Central Institute for Biomedical Technology, Ulm University, 89081 Ulm, GermanyCnopfsche Kinderklinik, 90419 Nürnberg, GermanyMedicover Paediatric Endocrinology, 26122 Oldenburg, GermanyDepartment of Paediatrics, University Hospital Magdeburg, 39120 Magdeburg, GermanyChildren’s Hospital Krefeld, 47805 Krefeld, GermanyDivision of Paediatric Endocrinology and Diabetes, University Hospital Innsbruck, 6020 Innsbruck, AustriaInstitute of Epidemiology and Medical Biometry, Central Institute for Biomedical Technology, Ulm University, 89081 Ulm, GermanyDepartment of Paediatrics, University Hospital Erlangen, 91054 Erlangen, GermanyDivision of Paediatric Endocrinology and Diabetes, University Children’s Hospital Heidelberg, 69120 Heidelberg, GermanyNeonatal screening for congenital primary hypothyroidism (CH) is mandatory in Germany but medical care thereafter remains inconsistent. Therefore, the registry HypoDok of the German Society of Pediatric Endocrinology and Diabetology (DGKED) was analyzed to evaluate the implementation of evidence-based guidelines and to assess the number of included patients. Inclusion criteria were (i) date of birth between 10/2001 and 05/2020 and (ii) increased thyroid-stimulating hormone (TSH) at screening and/or confirmation. The cohort was divided into before (A) and after (B) guideline publication in 02/2011, to assess the guideline’s influence on medical care. A total of 659 patients were analyzed as group A (<i>n</i> = 327) and group B (<i>n</i> = 332) representing 17.5% and 10.3% of CH patients identified in the German and Austrian neonatal screening program during the respective time period. Treatment start and thyroxine doses were similar in both groups and consistent with recommendations. Regular follow-ups were documented. In the first three years of life, less than half of the patients underwent audiometry; developmental assessment was performed in 49.3% (A) and 24.8% (B) (<i>p</i> < 0.01). Documentation of CH patient care by pediatric endocrinologists seemed to be established, however, it reflected only a minority of the affected patients. Therefore, comprehensive documentation as an important instrument of quality assurance and evidence-based medicine should be legally enforced and officially funded in order to record, comprehend, and optimize care and outcome in patients with rare diseases such as CH.https://www.mdpi.com/2409-515X/7/1/10standardized documentationquality assurancelongitudinal comparisonmulticenter database |
| spellingShingle | Julia Thomann Sascha R. Tittel Egbert Voss Rudolf Oeverink Katja Palm Susanne Fricke-Otto Klaus Kapelari Reinhard W. Holl Joachim Woelfle Markus Bettendorf Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok) International Journal of Neonatal Screening standardized documentation quality assurance longitudinal comparison multicenter database |
| title | Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok) |
| title_full | Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok) |
| title_fullStr | Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok) |
| title_full_unstemmed | Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok) |
| title_short | Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok) |
| title_sort | guideline adherence and registry recruitment of congenital primary hypothyroidism data from the german registry for congenital hypothyroidism hypodok |
| topic | standardized documentation quality assurance longitudinal comparison multicenter database |
| url | https://www.mdpi.com/2409-515X/7/1/10 |
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