From Genetic Risk Awareness to Overt Type 1 Diabetes

From Genetic Risk Awareness to Overt Type 1 Diabetes Parental stress in a placebo-controlled prevention trial Eszter Goldstein , MD 1 , 2 , Robert Hermann , MD, PHD 1 , 3 , Timo J. Renfors , PHD 4 , 5 , Kirsti M. Näntö-Salonen , MD, PHD 1 , Tapio Korhonen , PHD 6 , Maarit Kärkkäinen , MHSCI 1 , 7 , Riitta K. Veijola , MD, PHD 8 , Mikael Knip , MD, PHD 9 , 10 , Tuula T. Simell , PHD 1 and Olli G. Simell , MD, PHD 1 1 Department of Pediatrics, University of Turku, Turku, Finland; 2 Department of Psychiatry, Healthcare Center, Pécs, Hungary; 3 CellScreen Applied Biomedical Research Center, Budapest, Hungary; 4 Department of Psychology, University of Joensuu, Joensuu, Finland; 5 North Karelia Center for Public Health, Joensuu, Finland; 6 Department of Psychology, University of Turku, Turku, Finland; 7 Stadia Helsinki Polytechnic, Helsinki, Finland; 8 Department of Pediatrics, University of Oulu, Oulu, Finland; 9 Hospital for Children and Adolescents and Folkhälsan Research Center, University of Helsinki, Helsinki, Finland; 10 Department of Pediatrics, Tampere University Hospital, Tampere, Finland. Corresponding author: Kirsti M. Näntö-Salonen, kirsti.nanto-salonen{at}tyks.fi . Abstract OBJECTIVE To evaluate the psychological burden of parents facing increasing risk of type 1 diabetes in their children. RESEARCH DESIGN AND METHODS In the population-based Type 1 Diabetes Prediction and Prevention (DIPP) Study, newborn infants with HLA-DQB1–conferred diabetes risk were enrolled in sequential analyses of diabetes-associated autoantibodies. Those persistently positive for at least two autoantibodies were recruited to a randomized double-blinded intervention trial. The experience of stress in parents of 664 children was measured using Parenting Stress Index self-report inventory. RESULTS While diagnosis of diabetes increased parental stress, the appearance of autoantibodies or participation in the intervention trial did not. Mothers had higher stress levels than fathers. Single parenthood and chronically ill family members increased parental stress. CONCLUSIONS Parental stress was not increased by notification of autoantibody positivity or by participation in an intervention trial. Other demanding family conditions contributed to the experience of stress. Footnotes Clinical trial reg. no. NCT00223613, clinicaltrials.gov . The costs of publication of this article were defrayed in part by the payment of page charges. This article must therefore be hereby marked “adver