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31.
  • Jonsson, Ulf, 1974-, et al. (author)
  • Long-term social skills group training for children and adolescents with autism spectrum disorder : a randomized controlled trial.
  • 2019
  • In: European Child and Adolescent Psychiatry. - : Springer Science and Business Media LLC. - 1018-8827 .- 1435-165X. ; 28:2, s. 189-201
  • Journal article (peer-reviewed)abstract
    • Social skills group training (SSGT) is widely used for intellectually able children and adolescents with autism spectrum disorder (ASD). Previous studies indicate small to moderate effects on social communication capacities. The duration of most available programs is relatively short, and extended training might lead to further improvement. This randomized controlled trial compared an extended 24-week version of the SSGT program KONTAKT with standard care. The weekly sessions gradually shifted in content from acquisition of new skills to real-world application of the acquired skills. A total of 50 participants with ASD (15 females; 35 males) aged 8-17 years were included. The study was conducted at two child and adolescent psychiatry outpatient units in Sweden. The primary outcome was the Social Responsiveness Scale-Second Edition (SRS-2) rated by parents and blinded teachers. Secondary outcomes included parent- and teacher-rated adaptive behaviors, trainer-rated global functioning and clinical severity, and self-reported child and caregiver stress. Assessments were made at baseline, posttreatment, and at 3-months follow-up. Parent-rated SRS-2 scores indicated large effects posttreatment [- 19.2; 95% CI - 29.9 to - 8.5; p < .001, effect size (ES) = 0.76], which were maintained at follow-up (- 20.7; 95% CI - 31.7 to - 9.7; p < .0001, ES = 0.82). These estimates indicate substantially larger improvement than previously reported for shorter SSGT. However, the effects on teacher-rated SRS-2 and most secondary outcomes did not reach statistical significance. Our results suggest added benefits of extended SSGT training, implying that service providers might reach better results by optimizing the delivery of SSGT.
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32.
  • Jonsson, Ulf, 1974-, et al. (author)
  • Mental health outcome of long-term and episodic adolescent depression : 15-year follow-up of a community  sample
  • 2011
  • In: Journal of Affective Disorders. - : Elsevier BV. - 0165-0327 .- 1573-2517. ; 130:3, s. 395-404
  • Journal article (peer-reviewed)abstract
    • BACKGROUND: Recent studies have highlighted the unfavourable natural course of chronic/long-term depression. We investigated the adult mental health outcome of adolescent depression, with specific focus on long-term and episodic adolescent major depression (MD). METHODS: A community sample of depressed adolescents and non-depressed peers was followed-up with a structured diagnostic interview after 15years. The participants (n=382) were divided into five groups depending on their status in adolescence: no depression (n=155); long-term MD (n=91); episodic MD (n=63); dysthymia (n=33); and subthreshold symptoms (n=40). Outcomes (age 19-31) included mood disorders, other mental disorders, suicidality, and treatment for mental disorders. RESULTS: The long-term group overall had a poorer outcome than the non-depressed group, with the episodic group in an intermediate position. The outcome of the dysthymic group was similar to that of the long-term group, while the subsyndromal group did not differ markedly from the non-depressed group. The long-term group was more likely than the episodic group to report adult anxiety disorders, multiple mental disorders, suicide attempts, and treatment; they also seemed to develop more persistent adult depressions, with a higher number of recurrent episodes and longer duration of antidepressant treatment. Even after adjustment for adolescent factors of clinical and etiological importance, the long-term group had a markedly less favourable outcome than the episodic group. LIMITATION: The participation rate at follow-up was 64.6%. CONCLUSION: Longstanding depression in adolescence is a powerful predictor of continued mental health problems in adulthood. It is now important to evaluate if early interventions can alter this severe course.
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33.
  • Jonsson, Ulf, 1974-, et al. (author)
  • Proof of concept : the TRANSITION program for young adults with autism spectrum disorder and/or attention deficit hyperactivity disorder.
  • 2021
  • In: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis. - 1103-8128 .- 1651-2014. ; 28:2, s. 78-90
  • Journal article (peer-reviewed)abstract
    • Background: The support needs of people with neurodevelopmental disorders are not sufficiently met during the initial years of adulthood.Aim: To evaluate feasibility and preliminary effects of a novel programme designed to empower young adults with autism spectrum disorder (ASD) and/or attention deficit hyperactivity disorder (ADHD) to make progress within significant life domains (i.e. work, education, finance, housing/household management, health, leisure/participation in society, and relationships/social network).Material and Method: TRANSITION is a 24-week programme that combines group-based workshops with personalised support based on goal attainment scaling. The study enrolled 26 young adults (50% females; age 17-24 years) in the normative intellectual range, diagnosed with ASD (n = 8), ADHD (n = 4), or both (n = 14). The intervention was delivered by the regular staff of publicly funded psychiatric services in Stockholm, Sweden.Results: The programme was possible to implement with minor deviations from the manual. Participants and staff generally viewed the intervention positively, but also provided feedback to guide further improvement. There was a high degree of attendance throughout, with 21 participants (81%) completing the programme. All completers exceeded their predefined goal expectations within at least one domain.Conclusions: The TRANSITION-programme is a promising concept that deserves further evaluation.
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34.
  • Jonsson, Ulf, 1974-, et al. (author)
  • Psychiatric diagnoses and risk of suicidal behaviour in young disability pensioners : prospective cohort studies of all 19-23 year olds in Sweden in 1995, 2000, and 2005, respectively
  • 2014
  • In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 9:11
  • Journal article (peer-reviewed)abstract
    • OBJECTIVE: Increasing rates of disability pension (DP) have been observed among young adults. We studied specific psychiatric DP diagnoses and subsequent risk of suicidal behaviour in a series of three cohorts of young adult in Sweden.METHOD: In a nationwide register study, we included all young adults who in 1995, 2000, and 2005, respectively, were 19-23 years old and lived in Sweden (n≈500,000 per cohort). Rates of DP and specific psychiatric DP diagnoses were recorded in each cohort. Hazard ratios (HRs) and 95% confidence intervals (CIs) for suicidal behaviour during the following five years, with the corresponding age group as reference, were calculated by Cox proportional hazard regression, adjusted for demographic variables and previous own and parental suicidal behaviour.RESULTS: The overall proportion with DP in this age group increased from 0.92% in 1995 to 2.29% in 2005, with particularly large increases in psychiatric diagnoses such as hyperkinetic disorders, pervasive developmental disorders, and depression/anxiety. The overall proportion of young disability pensioners attempting suicide during the five-year follow-up increased from 2.21% in the 1995 cohort to 3.81% in the 2005 cohort. Within most psychiatric DP diagnoses, the risk of attempted suicide did not change significantly over time, whereas suicide attempts increased in the reference group. Accordingly, the HRs for suicide attempt decreased in some psychiatric DP diagnoses. The highest adjusted HRs were observed for depression/anxiety (16.41; CI: 9.06 to 29.74) and schizophrenia (9.37; 6.13 to 14.31) in the 1995 cohort. The rate of suicide among young disability pensioners during follow-up ranged from 0.19% in 1995 to 0.37% in 2005, mainly occurring in individuals with psychiatric diagnoses. 
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35.
  • Jonsson, Ulf, 1974-, et al. (author)
  • Reporting of harms in randomized controlled trials of psychological interventions for mental and behavioral disorders : A review of current practice
  • 2014
  • In: Contemporary Clinical Trials. - : Elsevier BV. - 1551-7144 .- 1559-2030. ; 38:1, s. 1-8
  • Research review (peer-reviewed)abstract
    • BackgroundData suggest that certain psychological interventions can induce harm in a significant number of patients. While the need for adequate reporting of harms in clinical trials has repeatedly been emphasized, it is uncertain whether such information routinely is collected and reported in trials within this research field.MethodWe used the two major databases in clinical psychology and medicine (PsycINFO and PubMed) to identify original publications from 2010 reporting randomized controlled trials of psychological interventions for patients with mental and behavioral disorders. Two reviewers searched the full-text reports for information about monitoring of adverse events, side effects, and deterioration.ResultsTotally 132 eligible trials were identified. Only 28 trials (21%) included information that indicated any monitoring of harms on patient level. Four (3%) of these trials provided a description of adverse events as well as the methods used for collecting these data. Five of the trials (4%) reported adverse events but gave incomplete information about the method. An additional four reports (3%) briefly stated that no adverse events occurred, whereas 15 trials (11%) only provided information on deterioration or indicated monitoring of deterioration. The probability of including harm-related information was related to the journal impact factor.ConclusionImportant information about harms is not reported systematically within this research field, suggesting that the risk of reporting bias is nontrivial in conclusions about the risk-benefit ratio of psychological treatments. Guidelines on how to define, detect, and report harms related to psychological interventions could facilitate better reporting.
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36.
  • Leifler, Emma, et al. (author)
  • Does the learning environment 'make the grade'? A systematic review of accommodations for children on the autism spectrum in mainstream school
  • 2021
  • In: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis. - 1103-8128 .- 1651-2014. ; 28:8, s. 582-597
  • Journal article (peer-reviewed)abstract
    • BACKGROUND: The 2030 Agenda for Sustainable Development adapted by the United Nations envisions inclusive and equitable quality education. While there is a growing body of research on interventions designed to help children on the autism spectrum adapt to the school environment, accommodations to children needs have been given less attention.OBJECTIVE: To synthesize the literature on accommodations in the learning environment for children on the autism spectrum (ages 5-19 years) in mainstream school, with a specific focus on the effects on functioning, educational outcomes and well-being.METHODS: A systematic search was conducted. The study selection and data extraction were performed by two independent reviewers. Eligible studies were assessed according to the What Works Clearinghouse (WWC) standards.RESULTS: The search yielded 6102 citations. Only 37 eligible studies were identified, of which 14 met the WWC standards. This inconclusive and heterogeneous body of research tentatively suggest that accommodations in the pedagogical and psychosocial leaning environment can improve performance and function in school.CONCLUSION AND SIGNIFICANCE: Accommodations in the learning environment is a promising but understudied approach. Creative research and innovation will be needed to support policy makers and school personnel in their quest to ensure inclusive and equitable education.
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37.
  • Li, Danyang, et al. (author)
  • Rare variants in the outcome of social skills group training for autism
  • 2022
  • In: Autism Research. - : Wiley. - 1939-3792 .- 1939-3806. ; 15:3, s. 434-446
  • Journal article (peer-reviewed)abstract
    • Exome sequencing has been proposed as the first-tier genetic testing in autism spectrum disorder (ASD). Here, we performed exome sequencing in autistic individuals with average to high intellectual abilities (N = 207) to identify molecular diagnoses and genetic modifiers of intervention outcomes of social skills group training (SSGT) or standard care. We prioritized variants of clinical significance (VCS), variants of uncertain significance (VUS) and generated a pilot scheme to calculate genetic scores of rare and common variants in ASD-related gene pathways. Mixed linear models were used to test the association between the carrier status of VCS/VUS or the genetic scores with intervention outcomes measured by the social responsiveness scale. Additionally, we combined behavioral and genetic features using a machine learning (ML) model to predict the individual response. We showed a rate of 4.4% and 11.3% of VCS and VUS in the cohort, respectively. Individuals with VCS or VUS had improved significantly less after standard care than non-carriers at post-intervention (β = 9.35; p = 0.036), while no such association was observed for SSGT (β = −2.50; p = 0.65). Higher rare variant genetic scores for synaptic transmission and regulation of transcription from RNA polymerase II were separately associated with less beneficial (β = 8.30, p = 0.0044) or more beneficial (β = −6.79, p = 0.014) effects after SSGT compared with standard care at follow-up, respectively. Our ML model showed the importance of rare variants for outcome prediction. Further studies are needed to understand genetic predisposition to intervention outcomes in ASD.
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38.
  • Li, Danyang, et al. (author)
  • The influence of common polygenic risk and gene sets on social skills group training response in autism spectrum disorder
  • 2020
  • In: NPJ Genomic Medicine. - : Nature Publishing Group. - 2056-7944. ; 5:1
  • Journal article (peer-reviewed)abstract
    • Social skills group training (SSGT) is a frequently used behavioral intervention in autism spectrum disorder (ASD), but the effects are moderate and heterogeneous. Here, we analyzed the effect of polygenic risk score (PRS) and common variants in gene sets on the intervention outcome. Participants from the largest randomized clinical trial of SSGT in ASD to date were selected (N = 188, 99 from SSGT, 89 from standard care) to calculate association between the outcomes in the SSGT trial and PRSs for ASD, attention-deficit hyperactivity disorder (ADHD), and educational attainment. In addition, specific gene sets were selected to evaluate their role on intervention outcomes. Among all participants in the trial, higher PRS for ADHD was associated with significant improvement in the outcome measure, the parental-rated Social Responsiveness Scale. The significant association was due to better outcomes in the standard care group for individuals with higher PRS for ADHD (post-intervention: β = −4.747, P = 0.0129; follow-up: β = −5.309, P = 0.0083). However, when contrasting the SSGT and standard care group, an inferior outcome in the SSGT group was associated with higher ADHD PRS at follow-up (β = 6.67, P = 0.016). Five gene sets within the synaptic category showed a nominal association with reduced response to interventions. We provide preliminary evidence that genetic liability calculated from common variants could influence the intervention outcomes. In the future, larger cohorts should be used to investigate how genetic contribution affects individual response to ASD interventions.
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39.
  • Löthberg, Maria, et al. (author)
  • 'If I Don't Have My Support Worker in the Room…' : A Multi-perspective Mixed Methods Study of Remote Daily Living Support for Neurodivergent Young Adults
  • 2024
  • In: Journal of autism and developmental disorders. - : Springer. - 0162-3257 .- 1573-3432.
  • Journal article (peer-reviewed)abstract
    • PURPOSE: Information technology is increasingly being employed for providing support and interventions in disability and health service contexts. This study aimed to investigate service users' and support workers' perspectives on remote support in daily living for young adults with neurodevelopmental conditions.METHODS: Using a convergent mixed methods approach, we integrated qualitative and quantitative findings from survey responses and focus groups. Young service users (aged 18 to 29) diagnosed with ADHD and/or autism (n = 35) and support workers (n = 64) from four municipalities in Sweden responded to a survey designed to tap into their lived experiences and views. The topic was explored further in focus groups with young service users (n = 7) and support workers (n = 3). Open-ended survey questions were analyzed using qualitative content analyses and complemented with information from the focus groups, while closed survey questions were summarized descriptively. Inferences were merged in a joint display.RESULTS: While participants reported having access to digital devices, service routines for remote contact were not in place. Service users were more hesitant than support workers in endorsing remote support, expressing concerns that this approach would be inferior to in-person support (e.g., owing to miscommunications and insufficient social and emotional contact). Still, both groups expressed that remote contact may at times be a beneficial complement to in-person meetings, increasing accessibility and user choice.CONCLUSION: Service providers planning to implement remote support elements should explore the demand, acceptability, and organizational readiness for this approach. Moving forward, user engagement will be crucial to meet individual preferences, values, and needs.
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40.
  • Löthberg, Maria, et al. (author)
  • Support in Daily Living for Young Adults with Neurodevelopmental Conditions in Sweden : A Qualitative Description of Current Practice
  • 2023
  • In: Journal of autism and developmental disorders. - : Springer Nature. - 0162-3257 .- 1573-3432. ; , s. 1-16
  • Journal article (peer-reviewed)abstract
    • In Sweden, people living independently and requiring daily living support can access 'housing support', a form of practical, educational, and social support provided by the municipalities. About two-thirds of those receiving this support have neurodevelopmental conditions, primarily autism or ADHD. Many are young adults in the process of adapting to new roles and expectations in different life domains, including education, work, and accommodation. This study aimed to provide a qualitative description of support workers' views on current practice in housing support for young adults (aged 18 to 29) with neurodevelopmental conditions. Semi-structured telephone interviews were conducted with 34 housing support workers across 19 Swedish regions. An inductive qualitative content analysis approach was used. The interviews depicted a complex service, subject to organizational aspects (roles, responsibilities, availability, and allocation), the joint effort of key players (young adults, relatives, and support workers), and practical aspects of service provision (finding common ground for the work, and delivery of support). Some elements of the service were poorly designed for the target group. The support workers expressed a need for more knowledge about neurodevelopmental conditions, but also described new insights related to remote delivery of support. The results raise important questions about how housing support should be organized and delivered to strike the right balance between support and autonomy, meet specific needs, and ensure equal services across municipalities. Future research should adopt multiple perspectives and approaches, to help translate best practice and available evidence into a flexible and sustainable service.
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