The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4–18 years, with Marfan syndrome (MFS, n = 74), Loeys–Dietz syndrome (n = 8), molecular confirmed Ehlers–Danlos syndromes (n = 15), and hypermobile Ehlers–Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p < 0.001, d = 0.9) and Psychosocial sum scores (p = 0.024, d = 0.2), indicating decreased HRQoL. Similar findings were obtained for child-reported HRQoL. The parent-reported mental health of the HCTD-group showed significantly increased Total difficulties sum scores (p = 0.01, d = 0.3), indicating decreased mental health. While the male and female MFS- and hEDS-subgroups both reported decreased HRQoL, only the hEDS-subgroup reported decreased mental health. In conclusion, children and adolescents with HCTD report decreased HRQoL and mental health, with most adverse outcomes reported in children with hEDS and least in those with MFS. These findings call for systematic monitoring and tailored interventions.
Alcohol use among adolescents has become a major public health concern over the past decade. This alcohol use is associated with various other problems, therefore it is important to detect at-risk adolescents as a starting point for interventions. The main aim of this thesis is to identify determinants of adolescent alcohol use. Furthermore, determinants of multiple health risk behaviors were studied. The studies described in this thesis were embedded within the TRAILS (TRacking Adolescents’ Individual Lives Survey) study. TRAILS is a large prospective cohort study of the psychological, social and psychical development of children into adulthood. The TRAILS study started in 2001 when the children were aged 10-12 years. The results of this thesis show that parenting is a determinant for adolescent alcohol use. Furthermore, Self-control, aggressive behavior, alcohol use of friends and various socio-demographic characteristics were predictive for alcohol use. Low self-control does not increase the risk of alcohol use, but does increase the risk of alcohol abuse and multiple health risk behaviors. Although some aspects of parenting were found to be predictive for adolescent alcohol use, the effects were small. The results show that in future research on determinants for alcohol use by adolescents a distinction should be made between specific patterns of alcohol use and that the association with other health risk behaviors should be studied. The same holds true for the development of preventive intervention programs. Further increase of the cooperation between schools and Preventive Child Healthcare may increase the efficiency of these programs.
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