Silvana Mengoni

Validity and sensitivity of the phonics screening check: implications for practice

This is an Open Access article made available under the terms of the Creative Commons Attribution 3.0 Unported (CC BY 3.0) license https://creativecommons.org/licenses/by/3.0/ , which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Learning to read new words in individuals with Down syndrome : Testing the role of phonological knowledge

This study examined the effect of word level phonological knowledge on learning to read new words in Down syndrome compared to typical development. Children were taught to read 12 nonwords, 6 of which were pre-trained on their phonology. The 16 individuals with Down syndrome aged 8-17 years were compared first to a group of 30 typically developing children aged 5-7 years matched for word reading and then to a subgroup of these children matched for decoding. There was a marginally significant effect for individuals with Down syndrome to benefit more from phonological pre-training than typically developing children matched for word reading but when compared to the decoding-matched subgroup, the two groups benefitted equally. We explain these findings in terms of partial decoding attempts being resolved by word level phonological knowledge and conclude that being familiar with the spoken form of a new word may help children when they attempt to read it. This may be particularly important for children with Down syndrome and other groups of children with weak decoding skills.

Wordless intervention for people with epilepsy and learning disabilities (WIELD):A randomised controlled feasibility trial

Objective To investigate the feasibility of a full-scale randomised controlled trial of a picture booklet to improve quality of life for people with epilepsy and learning disabilities. Trial design A randomised controlled feasibility trial. Randomisation was not blinded and was conducted using a centralised secure database and a blocked 1:1 allocation ratio. Setting Epilepsy clinics in 1 English National Health Service (NHS) Trust. Participants Patients with learning disabilities and epilepsy who had: a seizure within the past 12 months, meaningful communication and a carer with sufficient proficiency in English. Intervention Participants in the intervention group used a picture booklet with a trained researcher, and a carer present. These participants kept the booklet, and were asked to use it at least twice more over 20 weeks. The control group received treatment as usual, and were provided with a booklet at the end of the study. Outcome measures 7 feasibility criteria were used relating to recruitment, data collection, attrition, potential effect on epilepsy-related quality of life (Epilepsy and Learning Disabilities Quality of Life Scale, ELDQOL) at 4-week, 12-week and 20-week follow-ups, feasibility of methodology, acceptability of the intervention and potential to calculate cost-effectiveness. Outcome The recruitment rate of eligible patients was 34% and the target of 40 participants was reached. There was minimal missing data and attrition. An intention-to-treat analysis was performed; data from the outcome measures suggest a benefit from the intervention on the ELDQOL behaviour and mood subscales at 4 and 20 weeks follow-up. The booklet and study methods were positively received, and no adverse events were reported. There was a positive indication of the potential for a cost-effectiveness analysis. Conclusions All feasibility criteria were fully or partially met, therefore confirming feasibility of a definitive trial. Trial registration number ISRCTN80067039.

Feasibility study of a randomised controlled trial to investigate the effectiveness of using a humanoid robot to improve the social skills of children with autism spectrum disorder (Kaspar RCT): a study protocol

Introduction Interventions using robot-assisted therapy may be beneficial for the social skills development of children with autism spectrum disorder (ASD); however, randomised controlled trials (RCTs) are lacking. The present research aims to assess the feasibility of conducting an RCT evaluating the effectiveness of a social skills intervention using Kinesics and Synchronisation in Personal Assistant Robotics (Kaspar) with children with ASD. Methods and analysis Forty children will be recruited. Inclusion criteria are the following: aged 5–10 years, confirmed ASD diagnosis, IQ over 70, English-language comprehension, a carer who can complete questionnaires in English and no current participation in a private social communication intervention. Children will be randomised to receive an intervention with a therapist and Kaspar, or with the therapist only. They will receive two familiarisation sessions and six treatment sessions for 8 weeks. They will be assessed at baseline, and at 10 and 22 weeks after baseline. The primary outcome of this study is to evaluate whether the predetermined feasibility criteria for a full-scale trial are met. The potential primary outcome measures for a full-scale trial are the Social Communication Questionnaire and the Social Skills Improvement System. We will conduct a preliminary economic analysis. After the study has ended, a sample of 20 participants and their families will be invited to participate in semistructured interviews to explore the feasibility and acceptability of the study’s methods and intervention. Ethics and dissemination Parents/carers will provide informed consent, and children will give assent, where appropriate. Care will be taken to avoid pressure or coercion to participate. Aftercare is available from the recruiting NHS Trust, and a phased withdrawal protocol will be followed if children become excessively attached to the robot. The results of the study will be disseminated to academic audiences and non-academic stakeholders, for example, families of children with ASD, support groups, clinicians and charities. Trial registration number ISRCTN registry (ISRCTN14156001); Pre-results.

“…their opinions mean something”: Care staff's attitudes to health research involving people with intellectual disabilities

© 2017 The Authors. British Journal of Learning Disabilities published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

A wordless intervention for people with epilepsy and intellectual disabilities (WIELD): A randomized controlled feasibility trial

Aim: Research on co-morbid health conditions experienced by people with autism spectrum disorder (ASD) is underdeveloped. This study aimed to systematically review existing systematic reviews and meta-analyses in order to identify evidence on the physical and mental health needs of people with ASD. Method: A literature search was conducted through PsycINFO, Scopus, CINAHL, Medline, and Cochrane databases an was limited to systematic reviews and meta-analyses published between 2005 and 2015. The following search terms were used: ‘autis*’ OR ‘pervasive developmental disorder’ OR ‘Asperger*’ OR ‘ASD’. Results: Out of 3,035 results, 243 articles were identified as potentially relevant and chosen for further review; 20 articles met the inclusion criteria. These focussed on mental health conditions (n=8), physical and genetic conditions (n=7),epilepsy (n=3), gender differences in health needs (n=1)and health problems in aging populations (n=1).Conclusions: Individuals with ASD experience a variety of co-morbid health problems, and frequently more than one condition co-occurs with autism. Whilst evidence exists regarding prevalence of co-morbidities, significant heterogeneity of studies and inconsistent reporting impact on the quality of systematic reviews and meta-analyses in this field.

What are the challenges and facilitators to conducting research with people with intellectual disabilities? The perspectives of care staff

Aim: Research on co-morbid health conditions experienced by people with autism spectrum disorder (ASD) is underdeveloped. This study aimed to systematically review existing systematic reviews and meta-analyses in order to identify evidence on the physical and mental health needs of people with ASD. Method: A literature search was conducted through PsycINFO, Scopus, CINAHL, Medline, and Cochrane databases an was limited to systematic reviews and meta-analyses published between 2005 and 2015. The following search terms were used: ‘autis*’ OR ‘pervasive developmental disorder’ OR ‘Asperger*’ OR ‘ASD’. Results: Out of 3,035 results, 243 articles were identified as potentially relevant and chosen for further review; 20 articles met the inclusion criteria. These focussed on mental health conditions (n=8), physical and genetic conditions (n=7),epilepsy (n=3), gender differences in health needs (n=1)and health problems in aging populations (n=1).Conclusions: Individuals with ASD experience a variety of co-morbid health problems, and frequently more than one condition co-occurs with autism. Whilst evidence exists regarding prevalence of co-morbidities, significant heterogeneity of studies and inconsistent reporting impact on the quality of systematic reviews and meta-analyses in this field.