Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok)

Thomann, Julia; Tittel, Sascha R.; Voss, Egbert; Oeverink, Rudolf; Palm, Katja; Fricke-Otto, Susanne; Kapelari, Klaus; Holl, Reinhard W.; Woelfle, Joachim; Bettendorf, Markus

doi:10.3390/ijns7010010

Open AccessArticle

Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok)

by

Julia Thomann

^1,*,

Sascha R. Tittel

²

,

Egbert Voss

³,

Rudolf Oeverink

⁴

,

Katja Palm

⁵

,

Susanne Fricke-Otto

⁶,

Klaus Kapelari

⁷,

Reinhard W. Holl

²

,

Joachim Woelfle

⁸ and

Markus Bettendorf

¹

Division of Paediatric Endocrinology and Diabetes, University Children’s Hospital Heidelberg, 69120 Heidelberg, Germany

²

Institute of Epidemiology and Medical Biometry, Central Institute for Biomedical Technology, Ulm University, 89081 Ulm, Germany

³

Cnopfsche Kinderklinik, 90419 Nürnberg, Germany

⁴

Medicover Paediatric Endocrinology, 26122 Oldenburg, Germany

⁵

Department of Paediatrics, University Hospital Magdeburg, 39120 Magdeburg, Germany

⁶

Children’s Hospital Krefeld, 47805 Krefeld, Germany

⁷

Division of Paediatric Endocrinology and Diabetes, University Hospital Innsbruck, 6020 Innsbruck, Austria

⁸

Department of Paediatrics, University Hospital Erlangen, 91054 Erlangen, Germany

^*

Author to whom correspondence should be addressed.

Int. J. Neonatal Screen. 2021, 7(1), 10; https://doi.org/10.3390/ijns7010010

Submission received: 16 January 2021 / Revised: 2 February 2021 / Accepted: 7 February 2021 / Published: 12 February 2021

(This article belongs to the Special Issue Newborn Screening Follow-Up and Education)

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Abstract

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 (n = 327) and group B (n = 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) (p < 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.

Keywords: standardized documentation; quality assurance; longitudinal comparison; multicenter database

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MDPI and ACS Style

Thomann, J.; Tittel, S.R.; Voss, E.; Oeverink, R.; Palm, K.; Fricke-Otto, S.; Kapelari, K.; Holl, R.W.; Woelfle, J.; Bettendorf, M. Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok). Int. J. Neonatal Screen. 2021, 7, 10. https://doi.org/10.3390/ijns7010010

AMA Style

Thomann J, Tittel SR, Voss E, Oeverink R, Palm K, Fricke-Otto S, Kapelari K, Holl RW, Woelfle J, Bettendorf M. Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok). International Journal of Neonatal Screening. 2021; 7(1):10. https://doi.org/10.3390/ijns7010010

Chicago/Turabian Style

Thomann, Julia, Sascha R. Tittel, Egbert Voss, Rudolf Oeverink, Katja Palm, Susanne Fricke-Otto, Klaus Kapelari, Reinhard W. Holl, Joachim Woelfle, and Markus Bettendorf. 2021. "Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok)" International Journal of Neonatal Screening 7, no. 1: 10. https://doi.org/10.3390/ijns7010010

APA Style

Thomann, J., Tittel, S. R., Voss, E., Oeverink, R., Palm, K., Fricke-Otto, S., Kapelari, K., Holl, R. W., Woelfle, J., & Bettendorf, M. (2021). Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok). International Journal of Neonatal Screening, 7(1), 10. https://doi.org/10.3390/ijns7010010

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Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok)

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