Parent responses to participation in genetic screening for diabetes risk

Abstract

: Screening for type 1 diabetes (T1DM) risk in newborns has little negative emotional impact on mothers. In this study, the impact on the mother and the father was evaluated both in the general population and in families with diabetes. All parents with a newborn in Skåne, Sweden, were invited to a screening for T1DM risk in their children (the Diabetes Prediction in Skåne (DiPiS)). Blood was obtained at delivery from the mother and the child. When the child was 2 months old, parents gave written consent and filled out questionnaires, but were not informed about the genetic risk. Of the 10 538 invited families, 6831 (64.8%) consented and 806 (7.7%) declined participation. Five questions addressing both parents were filled out by 6676 (63.4%) mothers and 6099 (57.8%) fathers. In 146/6676 (2.2%) families, one family member had diabetes (D‐families). Participation in DiPiS did not affect most parents and the majority was satisfied with the information. The majority of parents (28.9%) were reassured and only 1.1% (140/12 670) reported increased worries because of participation, compared to 2.8% of the mothers in D‐families. Parents in D‐families more often ascribed diabetes risk to their child as well as the risk being higher. Mothers and fathers differed in their answers on four of the five study questions, with mothers being more satisfied with the information, reporting more knowledge of diabetes, estimating lower risk of their child to get diabetes, but reporting more worries of possible future chronic disease in the child. Parents with lower education, being born abroad, or being younger who reported worries of chronic disease in the child were also reassured by participation in the study. These results confirm that screening for T1DM risk in newborns does not create worries in most parents, but stress that fathers differ from mothers in opinions and reactions, that parents' reactions are affected by diabetes in the family, and that demographic factors might be important for the parents' reports.

Children developing type 1 diabetes before 6 years of age have increased linear growth independent of HLA genotypes

“…Finally, in these children developing diabetes before 6 years of age, the analysis of BMI SDS suggested a trend towards a reduced rather than an increased BMI. The present study represents all of the children who were born in Skåne County during the period September 2000 to August 2004 and subsequently developed type 1 diabetes by December 2006 [14,28]. The 60 children developing diabetes before 6 years of age represent an incidence rate as high as about 40/100,000 children per year.…”

“…Of 48,000 children born from September 2000 to August 2004, 60 had developed diabetes as of December 2006. These children were all born during the screening years of the DiPiS study, a populationbased prospective investigation of diabetes in children [14,28,29], allowing us to select a total of 155 matched control children.…”

“…The aim of the DiPiS is to determine the positive predictive value for type 1 diabetes of genetic risk combined with islet cell autoantibody markers and to identify factors during and after pregnancy that may trigger the disease [28]. Cord blood from more than 35,000 children was genotyped for HLA and analysed for islet autoantibodies.…”

“…Cord blood from more than 35,000 children was genotyped for HLA and analysed for islet autoantibodies. Participating parents filled in questionnaires when the child was 2 months of age [28]. Children with increased risk of type 1 diabetes, according to a scoring based upon HLA genotype, cord blood islet autoantibodies or other risk factors such as high birthweight, infections during pregnancy and first-grade relative with diabetes, are followed annually from 2 years of age with blood samples for islet autoantibodies and questionnaires.…”

“…The results in some of these studies [23,26,27] are complicated by the use of data collected from patients after diagnosis of diabetes, when insulin therapy had already been introduced. In the Diabetes Prediction in Skåne (DiPiS) study [14,28,29], children are followed from birth. As 60 children below the age of 6 years have already developed type 1 diabetes, we wanted to examine whether any of these children showed deviation in growth.…”