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. 2022 Dec;23(8):1707-1716.
doi: 10.1111/pedi.13448.

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

Janne Houben  1 , Martha Janssens  1 , Christiane Winkler  2 , Rachel Elizabeth Jane Besser  3   4 , Katarzyna Dzygalo  5 , Annika Fehn  2 , Angela Hommel  6 , Karin Lange  7 , Helena Elding Larsson  8   9 , Markus Lundgren  8   10 , Frank Roloff  11 , Matthew Snape  3   4 , Agnieszka Szypowska  5 , Andreas Weiss  2 , Jose Zapardiel-Gonzalo  2 , Nicole Zubizarreta  6 , Anette-Gabriele Ziegler  2   12 , Kristina Casteels  1   13 ; GPPAD study group
Affiliations

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

Janne Houben et al. Pediatr Diabetes. 2022 Dec.

Abstract

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.

Keywords: emotional well-being; genetic risk; parents; prevention; type 1 diabetes.

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References

REFERENCES

    1. Winkler C, Haupt F, Heigermoser M, et al. Identification of infants with increased type 1 diabetes genetic risk for enrollment into primary prevention trials-GPPAD-02 study design and first results. Pediatr Diabetes. 2019;20(6):720-727. doi:10.1111/pedi.12870
    1. Mobasseri M, Shirmohammadi M, Amiri T, Vahed N, Fard HH, Ghojazadeh M. Prevalence and incidence of type 1 diabetes in the world: a systematic review and meta-analysis. Health Promot Perspect. 2020;10(2):98-115. doi:10.34172/hpp.2020.18
    1. Dayan CM, Korah M, Tatovic D, Bundy BN, Herold KC. Changing the landscape for type 1 diabetes: the first step to prevention. Lancet. 2019;394(10205):1286-1296. doi:10.1016/S0140-6736(19)32127-0
    1. Misso ML, Egberts KJ, Page M, O'Conner D, Shaw J. Continuous subcutaneous insulin infusion (CSII) versus multiple insulin injections for type 1 diabetes mellitus. Cochrane Database Syst Rev. 2010;2010(1). doi:10.1002/14651858.CD005103.pub2
    1. Stephens E. Insulin therapy in type 1 diabetes. Med Clin N Am. 2015;99(1):145-156. doi:10.1016/j.mcna.2014.08.016

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