“…This was an unexpected finding given the well-known risk of (acute) medical MFS related complications (Dietz, 1993;Faivre et al, 2012;Loeys et al, 2010;Sheikhzadeh et al, 2012;Stheneur et al, 2014;Velvin et al, 2015aVelvin et al, , 2016b, the need for regular medical follow up (Hilhorst-Hofstee, 2013; Rozado et al, 2017;Tinkle & Saal, 2013) for both children and also for the parent with MFS, and the perceived significant impact of MFS on daily (physical) functioning of children, parents and the family (Nielsen et al, 2019;Peters et al, 2002;Speed et al, 2017; Velvin et al, 2015a, 2015b, 2016a, 2016b; Warnink-Kavelaars, T A B L E 2 DT-P overall and clinical distress score, problem domain scores and additional question scores of mothers and fathers of a child with MFS compared to control-group mothers and fathers of healthy children Note: Significant differences at p < .05 are presented in bold; distress and domain scores: numerical data > not normal distributed > Mann-Whitney U tests with Z score (z) and effect size (r); binary data > Chisquare tests with odds ratio (OR) and confidence interval (CI). Abbreviations: IQR, interquartile range; MFS, Marfan syndrome; p value, probability value; OR, odds ratio; r, effect size; n, number.…”