SIBS Søskenprosjektet

Denne artikkelen oppsummerer kunnskapen om effekten av søskenintervensjonen SIBS til barn med kroniske helsetilstander. Intervensjonen baserer seg på familiesystemisk teori med elementer fra resiliensteori, familiekommunikasjon, forståelse av sykdom og helsekunnskap samt kognitiv atferdsterapi. Intervensjonen er et manualbasert gruppetiltak der søsken og en forelder deltar over fem økter. Tre av de fem øktene er separate barne- og foreldregrupper. Det overordnede målet er å styrke kvaliteten på kommunikasjonen mellom foreldre og barn for slik å redusere risiko for utvikling av psykiske plager hos søsken som pårørende. Tiltaket tilbys av Frambu kompetansesenter for sjeldne diagnoser som gir opplæring i tiltaket og utdanner gruppeledere. Det eies av Frambu og Universitetet i Oslo

Use of health and dental care services in adults with intellectual disability in relation to age and intellectual disability levels

Background - This study investigates the use of health and dental care services in adults with intellectual disability in the last 12 months according to Norwegian recommendations and in relation to age and intellectual disability levels. Method - A cross-sectional community-based survey including 214 participants (56% men). POMONA health indicators were used for data collection. Results - Health checks and contact with general practitioners in the last year increased with age but were less frequent in those with more severe intellectual disability. Hospital admissions were age independent. Less than one-fifth of women had undergone cancer screening, with small variations according to intellectual disability severity levels. Few had an individual plan. More than one-third experienced poor dental health despite frequent controls. Conclusions - The use of health checks was lower than recommended, especially in individuals with more severe intellectual disability. Service access and individual plan use need to be enhanced, and dental care services should be improved

Validering av den norske foreldreversjonen av Developmental Behavior Checklist (DBC-P)

This study examined the psychometric properties of the Norwegian version of the Developmental Behavior Checklist – Parent (DBC-P) in an intellectual and developmental disabilities (IDD) sample of children and adolescents (N = 168). Internal consistency was adequate to excellent for all scales (Cronbach’s alpha ranged between .70–.96). The DBC-P showed meaningful overlap with and differentiation from the Aberrant Behavior Checklist, clinical diagnoses, the Vineland Adaptive Behavior Scales, and the Full Scale IQ. The Norwegian scale scores for a mild IDD level were comparable with the American norms. Further research including severe IDD levels is needed on the Norwegian DBC-P. In summary, the study shows that the Norwegian DBC-P has both adequate reliability and validity

Factors associated with non-completion of and scores on physical capability tests in health surveys: The North Health in Intellectual Disability Study

Background - This study investigated the completion rates, scores and factors associated with non-completion and low scores on physical capability tests in a health survey administered to adults with intellectual disabilities. Method - Assessment comprised body mass index (BMI), the Short Physical Performance Battery (SPPB), the timed up-and-go (TUG) test, the one-legged stance (OLS) test; and gross motor, communication and behavioural functioning tests. Results - The completion rates among 93 participants (aged 17–78) were 46% for the SPPB, 42% for the TUG, and 31% for the OLS. More severe intellectual disability (OR = 3.12, p  Conclusions - Including physical capability tests in health surveys among adults with intellectual disabilities is important to monitor functional status and guide prevention strategies

The Strengths and Difficulties Questionnaire self-report-, parent-, and teacher version in children with intellectual and developmental disabilities

Background: The Strengths and Difficulties Questionnaire (SDQ) is a frequently used behavioral screening instrument. However, its psychometric properties have been rarely examined among children with intellectual and developmental disabilities (IDD). Aims: The main aims of this study were to examine the internal consistency (i.e., McDonald’s Omega), the convergent validity (by correlating the Total difficulties score with the Aberrant Behavior Checklist [ABC]), the divergent validity (by correlating the Total difficulties score with the Vineland Adaptive Behavior Composite; VABS-II Total) and the factorial validity (by the means of confirmatory factor analyses [CFA]) of the SDQ self-report-, parent-, and teacher version in a sample of children with IDD. Method: Participants were 365 children and adolescents (males n = 238; 65 %) aged 4–18 years (M = 10.11, SD = 3.82) referred for a developmental/neurological assessment to the neuropediatric outpatient clinics in the specialist health services. The SDQ was filled inn by 115 children, 337 parents, and 248 teachers. Results: McDonald’s Omega was overall lowest for the self-report version. Correlations of the SDQ Total difficulties score and the ABC subscales were strongest for the parent version. The results of the CFA indicated best model fit for the six-factor model that included a method factor for all three versions of the SDQ, however, model fit was overall not good. Conclusions: Further research that examines the psychometric properties of the SDQ among multiple informants in large samples of children with IDD is needed

The psychometric properties of the Norwegian version of the Social Responsiveness Scale in a neuropediatric sample

Background: The current study is an examination of the psychometric properties of the Norwegian Social Responsiveness Scale (SRS), a measure of deficits in social behavior, in a neuropediatric outpatient sample of children and adolescents with neurological and neurodevelopmental disorders. Method: The internal consistency of the SRS, the convergent validity of the SRS with the Vineland Adaptive Behavior Scale-II (VABS-II), the Strengths and Difficulties Questionnaire (SDQ), and the Aberrant Behavior Checklist (ABC) were examined, in addition to four different factor models of the SRS (i.e., a one-factor, the original five-factor, a second-order five-factor model, and a 16-item one-factor model) using confirmatory factor analyses. Results: There was satisfactory internal consistency on all subscales, except for the Social Awareness subscale. The SRS showed a somewhat meaningful overlap with parts of the related scales on the VABS-II, the SDQ, and the ABC. Model fit indices were mixed for evaluating the four different factor models. Overall, however, the model fit was rather poor. Conclusions: The original SRS subscales showed adequate internal consistency and satisfactory convergent validity on some of the subscales. The construct validity in terms of factor structure was not acceptable. Future research should examine the psychometric properties of an improved version of the SRS, especially in terms of improving the scale’s construct validity

Examining the psychometric properties of the Norwegian version of the Social Aptitudes Scale in two clinical samples

Abstract Background Few studies have examined the psychometric properties of the Social Aptitudes Scale (SAS). The study aims of the current paper were to examine the internal consistency and the validity of the Norwegian SAS. Methods Parents of children from a clinical neuropediatric sample (N = 257) and from a clinical sample from child and adolescent’s mental health services (N = 804) filled in the SAS. Results Internal consistency for the SAS were good in both samples and correlations between the SAS and different scales were in the expected directions. The results from the Confirmatory Factor Analyses indicated poor model fit. Conclusions Future validity studies should investigate whether SAS is suitable as a screening instrument for detecting autism spectrum disorder

General Measurement Tools for Assessing Mental Health Problems Among Children and Adolescents with an Intellectual Disability: A Systematic Review

Introduction: Cognitive impairment is one of the main disabilities in dementia. Physical activity (PA) has been suggested as protective for dementia. However, the findings are disparate in studies, and the question of whether this is because of reverse causality is still open. We aimed to explore the association of PA with cognition in people who later developed dementia compared to those who did not. Method: Since 2001, 11,512 (55% women) participants over the age of 50 years had taken at least one cognitive test in the Tromsø Study. Of these, 1,123 (58% women) later developed dementia. The cases were extracted from hospital journals and entered into an endpoint registry. Leisure time PA (LTPA) was self-reported. Multilevel mixed-effects linear regression was used to address whether LTPA was associated with cognition, stratified by those later developing dementia, and dementia-free in a separate analysis. Results: Leisure time PA was associated with scores in cognitive tests that were 55% (z-score 0.14) higher in those who did not develop dementia. For those in a preclinical phase of dementia, there was no association with LTPA on global cognitive scores. However, in a multifactorial test on processing speed and memory, women had a positive association with processing speed and memory. Conclusion: Leisure time PA had a positive association with global cognition function only for those who did not develop dementia. In women who were developing dementia, LTPA had a positive association with processing speed and memory, while in men, there were no such associations

Efficacy and safety of baricitinib in hospitalized adults with severe or critical COVID-19 (Bari-SolidAct): a randomised, double-blind, placebo-controlled phase 3 trial

International audienceAbstract Background Baricitinib has shown efficacy in hospitalized patients with COVID-19, but no placebo-controlled trials have focused specifically on severe/critical COVID, including vaccinated participants. Methods Bari-SolidAct is a phase-3, multicentre, randomised, double-blind, placebo-controlled trial, enrolling participants from June 3, 2021 to March 7, 2022, stopped prematurely for external evidence. Patients with severe/critical COVID-19 were randomised to Baricitinib 4 mg once daily or placebo, added to standard of care. The primary endpoint was all-cause mortality within 60 days. Participants were remotely followed to day 90 for safety and patient related outcome measures. Results Two hundred ninety-nine patients were screened, 284 randomised, and 275 received study drug or placebo and were included in the modified intent-to-treat analyses (139 receiving baricitinib and 136 placebo). Median age was 60 (IQR 49–69) years, 77% were male and 35% had received at least one dose of SARS-CoV2 vaccine. There were 21 deaths at day 60 in each group, 15.1% in the baricitinib group and 15.4% in the placebo group (adjusted absolute difference and 95% CI − 0.1% [− 8·3 to 8·0]). In sensitivity analysis censoring observations after drug discontinuation or rescue therapy (tocilizumab/increased steroid dose), proportions of death were 5.8% versus 8.8% (− 3.2% [− 9.0 to 2.7]), respectively. There were 148 serious adverse events in 46 participants (33.1%) receiving baricitinib and 155 in 51 participants (37.5%) receiving placebo. In subgroup analyses, there was a potential interaction between vaccination status and treatment allocation on 60-day mortality. In a subsequent post hoc analysis there was a significant interaction between vaccination status and treatment allocation on the occurrence of serious adverse events, with more respiratory complications and severe infections in vaccinated participants treated with baricitinib. Vaccinated participants were on average 11 years older, with more comorbidities. Conclusion This clinical trial was prematurely stopped for external evidence and therefore underpowered to conclude on a potential survival benefit of baricitinib in severe/critical COVID-19. We observed a possible safety signal in vaccinated participants, who were older with more comorbidities. Although based on a post-hoc analysis, these findings warrant further investigation in other trials and real-world studies. Trial registration Bari-SolidAct is registered at NCT04891133 (registered May 18, 2021) and EUClinicalTrials.eu ( 2022-500385-99-00 )