SummaryBackgroundIt is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction.MethodsPACT was a randomised controlled trial of a parent-mediated social communication intervention for children aged 2–4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42–5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827.Findings121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI −0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI −0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI −0·23 to 0·53).InterpretationThe results are the first to show long-term symptom reduction after a randomised controlled trial of early intervention in autism spectrum disorder. They support the clinical value of the PACT intervention and have implications for developmental theory.FundingMedical Research Council.
Globally, 52.9 million children under the age of 5 experience a developmental disability, such as sensory impairment, intellectual disability, and autism spectrum disorders. Of these 95% live in low-and-middle-income countries. Most of these children lack access to care. In light of the growing evidence that caregivers can learn skills to support their children’s social communication and adaptive behavior and to reduce their challenging behavior, the World Health Organization developed a novel Caregiver Skills Training Program (CST) for families of children with developmental disorders or delay to address such treatment gap. This report outlines the development process, content, and global field-testing strategy of the WHO CST program. The CST program is designed to be feasible, scalable, and adaptable and appropriate for implementation in low-resource settings by nonspecialists. The program was informed by an evidence review utilizing a common elements approach and was developed through extensive stakeholder consultation and an iterative revision process. The program is intended for a global audience and was designed to be adapted to the cultural, socioeconomic, geographic, and resource context in which it is used to ensure that it is comprehensible, acceptable, feasible, and relevant to target users. It is currently undergoing field-testing in more than 30 countries across all world regions.
The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5). The consultation participants indicated that the Caregiver Skills Training addresses an urgent need and is relevant to the Ethiopian context. Several adaptations were proposed, including more emphasis on psycho-education, stigma, parental feelings of guilt and expectations of a cure. The adapted Caregiver Skills Training was pre-piloted with excellent participation (100%) and retention (90%) rates. Four themes were developed from the qualitative data: (1) Programme acceptability and relevance, (2) Perceived programme benefits, (3) Challenges and barriers and (4) Suggestions for improvement. The World Health Organization’s Caregiver Skills Training addresses a local need and, with careful adaptations, is feasible and acceptable to be implemented in Ethiopia. These findings may have relevance to low-resource settings worldwide.
Little is known about use of early interventions for autism spectrum disorder (ASD) in Europe. Parents of children with ASD aged 7 years or younger (N=1680) were recruited through parent organisations in 18 European countries and completed an online survey about the interventions their child received. There was considerable variation in use of interventions and in some countries more than 20% of children received no intervention at all. The most frequently reported treatments were speech and language therapy (64%) and behavioural, developmental and relationship based treatments (55%). In some parts of Europe, use of behavioural, developmental and relationship-based interventions was associated with higher parental educational level and time passed since diagnosis, rather than USE OF INTERVENTION FOR CHILDREN WITH ASD IN EUROPE 2 with child characteristics. These findings highlight the need to monitor use of treatment for children with ASD in Europe in order to contrast inequalities.
This study examined the prevalence and correlates of use of complementary and alternative medicine (CAM) among a sample of children with autism spectrum disorder (ASD) < 7 years in 18 European countries (N = 1,680). Forty-seven percent of parents reported having tried any CAM approach in the past 6 months. Diets and supplements were used by 25 % of the sample and mind–body practices by 24 %; other unconventional approaches were used by 25 % of the families, and a minority of parents reported having tried any invasive or potentially harmful approach (2 %). Parents in Eastern Europe reported significantly higher rates of CAM use. In the total sample, children with lower verbal ability and children using prescribed medications were more likely to be receiving diets or supplements. Concurrent use of high levels of conventional psychosocial intervention was significantly associated with use of mind–body practices. Higher parental educational level also increased the likelihood of both use of diets and supplements and use of mind–body practices. Conclusion: The high prevalence of CAM use among a sample of young children with ASD is an indication that parents need to be supported in the choice of treatments early on in the assessment process, particularly in some parts of Europe
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