The emotional well-being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT-study

Publikation: Beitrag in FachzeitschriftForschungsartikelBeigetragenBegutachtung


  • KU Leuven
  • Helmholtz-Zentrum für Umweltforschung (UFZ)
  • University of Oxford
  • NIHR Oxford Biomedical Research Centre
  • Medical University of Warsaw
  • Leibniz Universität Hannover
  • Lund University
  • Kristianstad Hospital
  • Kinder- und Jugendkrankenhaus Auf der Bult
  • Technische Universität München


INTRODUCTION: This study examined the emotional impact that parents experience when confronted with an increased genetic risk of type 1 diabetes (T1D) in their child. Population-based screening of neonates for genetic risk of chronic disease carries the risk of increased emotional burden for parents.

METHODS: Information was collected using a well-being questionnaire for parents of infants identified as having an increased risk for T1D in a multinational research study. Parents were asked to complete this questionnaire after they were told their child had an increased risk for T1D (Freder1k-study) and at several time points during an intervention study (POInT-study), where oral insulin was administered daily.

RESULTS: Data were collected from 2595 parents of 1371 children across five countries. Panic-related anxiety symptoms were reported by only 4.9% after hearing about their child having an increased risk. Symptoms of depression were limited to 19.4% of the parents at the result-communication visit and declined over time during the intervention study. When thinking about their child's risk for developing T1D (disease-specific anxiety), 47.2% worried, felt nervous and tense. Mothers and parents with a first-degree relative (FDR) with T1D reported more symptoms of depression and disease-specific anxiety (p < 0.001) than fathers and parents without a FDR.

CONCLUSION: Overall, symptoms of depression and panic-related anxiety are comparable with the German population. When asked about their child's risk for T1D during the intervention study, some parents reported disease-specific anxiety, which should be kept in mind when considering population-based screening. As certain subgroups are more prone, it will be important to continue psychological screening and, when necessary, to provide support by an experienced, multidisciplinary team.


Seiten (von - bis)1707-1716
FachzeitschriftPediatric diabetes
PublikationsstatusVeröffentlicht - 2 Nov. 2022

Externe IDs

PubMed 36323590


Ziele für nachhaltige Entwicklung


  • emotional well-being, genetic risk, parents, prevention, type 1 diabetes, Parents/psychology, Anxiety/etiology, Humans, Diabetes Mellitus, Type 1/psychology, Infant, Mothers/psychology, Emotions, Female, Child, Infant, Newborn