The emotional well-being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT-study.
Houben J., Janssens M., Winkler C., Besser REJ., Dzygalo K., Fehn A., Hommel A., Lange K., Elding Larsson H., Lundgren M., Roloff F., Snape M., Szypowska A., Weiss A., Zapardiel-Gonzalo J., Ziegler A-G., Casteels K., GPPAD study group None.
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. 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 timepoints during an intervention study (POInT-study), where oral insulin was administered daily. Data were collected from 2595 parents of 1371 children across five countries. Disease-specific anxiety was found in a larger group of parents (47.2%) during the intervention study. 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. Mothers and parents with a first-degree relative (FDR) with T1D reported more symptoms of depression and disease-specific anxiety (p