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Background: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). Aims: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. Methods and procedures: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. Outcomes and results: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0???? 8) and in children with BIF 2.88 (range 0???? 7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. Conclusions and implications: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires.METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ).RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59).CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.
Internationaal onderzoek laat zien dat ingrijpende jeugdervaringen, ook wel Adverse Childhood Experiences (ACE’s) genoemd, een sleutelrol spelen in de ontwikkeling van jeugdigen en hun (latere) psychische en fysieke gezondheid (o.a. Felitti et al., 1998; McLaughlin, 2016). Jeugdigen met verstandelijke beperkingen en hun ouders zijn helaas sterk ondervertegenwoordigd in internationaal onderzoek naar ACE’s, terwijl het belangrijk is dat de huidige inzichten ook kunnen bijdragen aan de verbetering van hun gezondheid en welzijn (o.a. Keesler, 2014; Northway, 2017). Uit verschillende studies blijkt namelijk dat mensen met een verstandelijke beperking vaker geestelijke en fysieke gezondheidsproblemen hebben (Northway, 2017). Daarnaast blijkt dat zij vaker worden blootgesteld aan een groter aantal ingrijpende levensgebeurtenissen (o.a. Emerson, 2015; Mason-Roberts et al., 2018) en dat deze blootstelling gerelateerd is aan een verhoogd risico op geestelijke gezondheidsproblemen (zie Vervoort-Schel et al., 2018 voor verwijzingen). De premisse van de ACE’s-studies is dat het voorkomen of verminderen van ingrijpende jeugdervaringen een positieve invloed heeft op gezondheid en welzijn in het leven (Northway, 2017). Het is veelbelovend om daar verder onderzoek naar te doen.