124 results on '"McConachie H"'
Search Results
2. Evaluating Sex and Age Differences in ADI-R and ADOS Scores in a Large European Multi-Site Sample of Individuals with Autism Spectrum Disorder
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Tillmann, J., Ashwood, K., Absoud, M., Bölte, S., Bonnet-Brilhault, F., Buitelaar, J. K., Calderoni, S., Calvo, R., Canal-Bedia, R., Canitano, R., De Bildt, A., Gomot, M., Hoekstra, P. J., Kaale, A., McConachie, H., Murphy, D. G., Narzisi, A., Oosterling, I., Pejovic-Milovancevic, M., Persico, A. M., Puig, O., Roeyers, H., Rommelse, N., Sacco, R., Scandurra, V., Stanfield, A. C., Zander, E., and Charman, T.
- Abstract
Research on sex-related differences in Autism Spectrum Disorder (ASD) has been impeded by small samples. We pooled 28 datasets from 18 sites across nine European countries to examine sex differences in the ASD phenotype on the ADI-R (376 females, 1763 males) and ADOS (233 females, 1187 males). On the ADI-R, early childhood restricted and repetitive behaviours were lower in females than males, alongside comparable levels of social interaction and communication difficulties in females and males. Current ADI-R and ADOS scores showed no sex differences for ASD severity. There were lower socio-communicative symptoms in older compared to younger individuals. This large European ASD sample adds to the literature on sex and age variations of ASD symptomatology.
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- 2018
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3. “Older Adults with ASD: The Consequences of Aging.” Insights from a series of special interest group meetings held at the International Society for Autism Research 2016–2017
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Roestorf, A., Bowler, D.M., Deserno, M.K., Howlin, P., Klinger, L., McConachie, H., Parr, J.R., Powell, P., Van Heijst, B.F.C., and Geurts, H.M.
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- 2019
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4. Quality of life for older autistic people: The impact of mental health difficulties
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Mason, D., Mackintosh, J., McConachie, H., Rodgers, J., Finch, T., and Parr, J.R.
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- 2019
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5. The Search for an Early Intervention Outcome Measurement Tool in Autism
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Fletcher-Watson, S. and McConachie, H.
- Abstract
Evidence is accumulating that early intervention can be effective in improving the skills of young children with autism spectrum disorder. However, the science is hampered by the lack of agreed "gold standard" tools for the measurement of progress and outcome. What is required is a reliable, valid, and sensitive measure of change in the core domains of autism, which can be undertaken blind to group and time. This article explores the use of a promising measure of change, for which reliability, validity, and sensitivity to change over a lengthy period have been previously demonstrated. Pilot data indicate that, despite some sensitivity to change over a short period of time, it does not capture treatment effects more effectively than an existing diagnostic tool. Future directions for the ongoing search are suggested, including consideration of how to achieve sensitivity to differential change as well as to change over time.
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- 2017
- Full Text
- View/download PDF
6. Evaluating Sex and Age Differences in ADI-R and ADOS Scores in a Large European Multi-site Sample of Individuals with Autism Spectrum Disorder
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Tillmann, J., Ashwood, K., Absoud, M., Bölte, S., Bonnet-Brilhault, F., Buitelaar, J. K., Calderoni, S., Calvo, R., Canal-Bedia, R., Canitano, R., De Bildt, A., Gomot, M., Hoekstra, P. J., Kaale, A., McConachie, H., Murphy, D. G., Narzisi, A., Oosterling, I., Pejovic-Milovancevic, M., Persico, A. M., Puig, O., Roeyers, H., Rommelse, N., Sacco, R., Scandurra, V., Stanfield, A. C., Zander, E., and Charman, T.
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- 2018
- Full Text
- View/download PDF
7. Designing for young children with autism spectrum disorder: A case study of an iPad app
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Fletcher-Watson, S., Pain, H., Hammond, S., Humphry, A., and McConachie, H.
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- 2016
- Full Text
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8. A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions
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Colver, A., McConachie, H., Le Couteur, A., Dovey-Pearce, G., Mann, K. D., McDonagh, J. E., Pearce, M. S., Vale, L., Merrick, H., Parr, J. R., and On behalf of the Transition Collaborative Group
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- 2018
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9. How well do services for young people with long term conditions deliver features proposed to improve transition?
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Colver, A., Pearse, R., Watson, R. M., Fay, M., Rapley, T., Mann, K. D., Le Couteur, A., Parr, J. R., McConachie, H., and on behalf of the Transition Collaborative Group
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- 2018
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10. Pilot Randomized Controlled Trial of the WHO Caregiver Skills Training in Public Health Services in Italy
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Salomone E., Settanni M., McConachie H., Suma K., Ferrara F., Foletti G., Salandin A., Brown F. L., Pacione L., Shire S., Servili C., Adamson L. B., Salomone, E, Settanni, M, Mcconachie, H, Suma, K, Ferrara, F, Foletti, G, Salandin, A, Brown, F, Pacione, L, Shire, S, Servili, C, and Adamson, L
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Male ,Parents ,medicine.medical_specialty ,Autism Spectrum Disorder ,Pilot Projects ,World Health Organization ,law.invention ,Skills training ,Randomized controlled trial ,law ,Statistical significance ,Developmental and Educational Psychology ,medicine ,Humans ,Caregiver skills training ,Parent-Child Relations ,Public health ,Parenting stress ,Mean age ,Parent–Child relation ,Health Services ,medicine.disease ,Child autism ,Caregivers ,Child, Preschool ,Physical therapy ,Autism ,Parenting education ,Psychology - Abstract
Parents of children with ASD (N = 86; mean age 44.8 months; 67 boys) were randomized to either WHO Caregiver Skills Training (CST) delivered in public health settings in Italy or enhanced treatment-as-usual. Primary blinded outcomes were 3-months post-intervention change scores of autism severity and engagement during caregiver-child interaction. CST was highly acceptable to caregivers and feasibly delivered by trained local clinicians. Intention-to-treat analysis showed a large and significant effect on parent skills supporting joint engagement and a smaller significant effect on flow of interaction. Expected changes in child autism severity and joint engagement did not meet statistical significance. Analysis of secondary outcomes showed a significant effect on parenting stress, self-efficacy, and child gestures. Strategies to improve the effectiveness of CST are discussed.
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- 2021
11. Childʼs verbal ability and gender are associated with age at diagnosis in a sample of young children with ASD in Europe
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Salomone, E., Charman, T., McConachie, H., and Warreyn, P.
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- 2016
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12. Variable implementation of good practice recommendations for the assessment and management of UK children with neurodisability
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Gray, L., Gibbs, J., Jolleff, N., Williams, J., McConachie, H., and Parr, J. R.
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- 2015
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13. Building capacity for rigorous controlled trials in autism: the importance of measuring treatment adherence
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McConachie, H. and Fletcher-Watson, S.
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- 2015
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14. A longitudinal, observational study examining the relationships of patient satisfaction with services and mental well-being to their clinical course in young people with Type 1 diabetes mellitus during transition from child to adult health services
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Gray, S., Cheetham, T., McConachie, H., Mann, K. D., Parr, J. R., Pearce, M. S., Colver, A., Transition Collaborative Group, and Bate, Angela
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Gerontology ,Longitudinal study ,Endocrinology, Diabetes and Metabolism ,Population ,Psychological intervention ,030209 endocrinology & metabolism ,B700 ,03 medical and health sciences ,Research: Care Delivery ,0302 clinical medicine ,Patient satisfaction ,Endocrinology ,SDG 3 - Good Health and Well-being ,Health care ,medicine ,Internal Medicine ,030212 general & internal medicine ,education ,Care Delivery ,Research Articles ,Type 1 diabetes ,education.field_of_study ,business.industry ,Attendance ,medicine.disease ,Observational study ,business - Abstract
Aim We hypothesized that participant well‐being and satisfaction with services would be positively associated with a satisfactory clinical course during transition from child to adult health care. Methods Some 150 young people with Type 1 diabetes mellitus from five diabetes units in England were recruited to a longitudinal study of transition. Each young person was visited at home four times by a research assistant; each visit was 1 year apart. Satisfaction with services (Mind the Gap; MTG) and mental well‐being (Warwick–Edinburgh Mental Well‐being Scale; WEMWBS) were captured. Change in HbA1c, episodes of ketoacidosis, clinic and retinal screening attendance were used to assess clinical course. In total, 108 of 150 (72%) young people had sufficient data for analysis at visit 4. Results Mean age at entry was 16 years. By visit 4, 81.5% had left paediatric healthcare services. Median HbA1c increased significantly (P = 0.01) from 69 mmol/mol (8.5%) at baseline to 75 mmol/mol (9.0%) at visit 4. WEMWBS scores were comparable with those in the general population at baseline and were stable over the study period. MTG scores were also stable. By visit 4, some 32 individuals had a ‘satisfactory’ and 76 a ‘suboptimal’ clinical course. There were no significant differences in average WEMWBS and MTG scores between the clinical course groups (P = 0.96, 0.52 respectively); nor was there a significant difference in transfer status between the clinical course groups. Conclusions The well‐being of young people with diabetes and their satisfaction with transition services are not closely related to their clinical course. Investigating whether innovative psycho‐educational interventions can improve the clinical course is a research priority., What's new? Well‐being and satisfaction with services were stable during a 3‐year longitudinal study of young people with Type 1 diabetes mellitus in transition to adult services.Well‐being and satisfaction with services were not related to HbA1c or the more general clinical course.Further work is needed to identify innovative and effective psycho‐educational interventions to improve the clinical course.
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- 2018
15. Predictors of reliable symptom change: Secondary analysis of the Preschool Autism Communication Trial
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Hudry, Kristelle, Mcconachie, H, Le Couteur, Ann, Howlin, Patricia, Barrett, Barbara, Slonims, Vicky, The PACT Consortium, Green, Jonathan, and Leadbitter, Kathy
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050103 clinical psychology ,lcsh:LC8-6691 ,lcsh:Special aspects of education ,business.industry ,media_common.quotation_subject ,05 social sciences ,Symptom severity ,medicine.disease ,lcsh:RC321-571 ,Psychiatry and Mental health ,Clinical Psychology ,Secondary analysis ,Intervention research ,Developmental and Educational Psychology ,medicine ,Autism ,0501 psychology and cognitive sciences ,Quality (business) ,business ,lcsh:Neurosciences. Biological psychiatry. Neuropsychiatry ,Uncategorized ,050104 developmental & child psychology ,media_common ,Clinical psychology - Abstract
Background and aims Despite recent gains in the amount and quality of early autism intervention research, identifying what works for whom remains an ongoing challenge. Exploiting data from the Preschool Autism Communication Trial (PACT), we undertook secondary analysis to explore prognostic indicators and predictors of response to one year of PACT therapy versus treatment as usual within this large and rigorously characterised cohort recruited across three UK trial sites. Methods In this secondary analysis of variability in child gains on the primary trial outcome measure – social-communication symptom severity – we used a pragmatic and data-driven approach to identify a subgroup of children who showed reliable improvement and a subgroup showing clear lack thereof. We then tested which among several baseline child and family factors – including measures routinely collected in research trials and clinical practice – varied as a function of child outcome status and treatment group. Results Greater baseline child non-verbal ability was a significant prognostic indicator of symptom reduction over time (i.e. irrespective of treatment group). By contrast, parent synchrony presented as marginal predictor, and trial recruitment site as a significant predictor, of differential outcome by treatment group. Specifically, lower parent synchrony showed some association with poorer outcomes for children from families assigned to treatment as usual (but with no such effect for those assigned to PACT). Similarly, children at one recruitment site were more likely to have poorer outcomes if assigned to treatment as usual, compared to children at the same site assigned to PACT. Conclusions The current data contribute to an evidence base indicting that early non-verbal ability is a robust indicator of generally better prognosis for young children with autism. Lower parent synchrony and a broadly more deprived socio-geographical context may inform the appropriate targeting of PACT. That is, given that the former factors predicted poorer outcome in children from families assigned to treatment as usual, the receipt of a relatively low-dose, parent-mediated and communication-focused therapy might be developmentally protective for young children with autism. Nevertheless, results from this study also highlight the paucity of meaningful predictors of outcome among routine clinical characterisation measures such as those investigated here. Implications Understanding the factors associated with differential treatment outcomes is critical if we are to individualise treatment decisions for children with autism. Inherently tied to this objective is a need to delineate those factors which specifically predict positive response (or lack of response) to one or other treatment option, versus those that indicate generally better (or poorer) prognosis, irrespective of treatment.
- Published
- 2018
16. Comparisons of the factor structure and measurement invariance of the Spence children’s anxiety scale - parent version in children with autism spectrum disorder and typically developing anxious children
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Glod, M., Creswell, C., Waite, P., Jamieson, R., McConachie, H., South, M. D., and Rodgers, J.
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mental disorders - Abstract
The Spence Children’s Anxiety Scale - Parent version (SCAS-P) is often used to assess anxiety in children with autism spectrum disorder (ASD), however, little is known about the validity of the tool in this population. The aim of this study was to determine whether the SCAS-P has the same factorial validity in a sample of young people with ASD (n=285), compared to a sample of typically developing young people with anxiety disorders (n=224). Poor model fit with all of the six hypothesised models precluded invariance testing. Exploratory factor analysis indicated that different anxiety phenomenology characterises the two samples. The findings suggest that cross-group comparisons between ASD and anxious samples based on the SCAS-P scores may not always be appropriate
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- 2017
17. Child's verbal ability and gender are associated with age at diagnosis in a sample of young children with ASD in Europe
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Salomone, E., Charman, T., Mcconachie, H., Warreyn, P., Salomone, E, Charman, T, Mcconachie, H, and Warreyn, P
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Male ,Parents ,Autism Spectrum Disorder ,Autism ,Sex Factor ,Access to health care ,Age at diagnosis ,Autism spectrum disorder ,Early assessment ,Europe ,Age Factors ,Child ,Child, Preschool ,Early Diagnosis ,Female ,Humans ,Language Development Disorders ,Severity of Illness Index ,Sex Factors ,Verbal Learning ,Pediatrics, Perinatology and Child Health ,Developmental and Educational Psychology ,Public Health, Environmental and Occupational Health ,Pediatrics ,behavioral disciplines and activities ,Language Development Disorder ,Early Diagnosi ,Age Factor ,Preschool ,Pediatric ,Environmental and Occupational Health ,Age at diagnosi ,Perinatology and Child Health ,Parent ,Public Health ,Human - Abstract
Background: Autism spectrum disorder can in some cases be reliably diagnosed by age 2years, but in community settings, the mean age at diagnosis is often considerably higher. Later diagnosis has been found to be associated with lower symptom severity, lower parental socioeconomic status and fewer parental concerns. Gender differences in age at diagnosis have been examined, with mixed evidence. Methods: We examined the association of child's verbal ability and gender, and parental education, with age at diagnosis in a large sample of young children with autism spectrum disorder in 18 European countries (n=1410). Results: There was considerable variation in age at diagnosis across countries. Children with better communication skills were diagnosed significantly later than non-verbal and minimally verbal children. There was also a significant interaction of gender with verbal ability on age at diagnosis, in that female children with complex phrase speech were diagnosed later than male children with the same level of verbal ability. Conclusions: Our findings highlight the need to implement public awareness initiatives and training for professionals to promote early detection and, consequently, early intervention for autism spectrum disorder in Europe. Copyright
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- 2015
18. Mothers, fathers and their children's health
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Paul Ramchandani and Mcconachie, H.
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- 2016
19. Designing for young children with autism spectrum disorder in health and education: a case study of an iPad app
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Fletcher-Watson, Susan, Pain, Helen, Hammond, S., Humphry, A, and McConachie, H.
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Individuals with autism spectrum disorders often benefit from technology-based intervention. Technologies being marketed to the autism community, and relevant published research, are proliferating. However, in the context of research in health and education, the requirement for an effective design process is not necessarily recognised. Understanding this process is necessary to facilitate recommendations about best practice in technology design and implementation where the end result is being applied in a health or education context. This report describes the development of an iPad app designed for very young children with autism. We describe methods for user-centred design with relevant stakeholders, expert evaluation and pilot testing of demo versions of the app, and their consequences for the finished game. In a final evaluation with 41 pre-schoolers with autism, average game play over a 2 month period was 11 minutes per day, with no evidence of obsessive behaviour. We discuss how this approach permits individual studies to inform the design of multiple technologies, contributing to dissemination of high standards in how therapeutic and educational technologies for specific populations are designed, pilot-tested and reported.
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- 2016
20. Child’s verbal ability and gender are associated with age at diagnosis in a sample of young children with autism spectrum disorder in Europe
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Salomone, E, Charman, T, McConachie, H, and Warreyn, Petra
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Europe ,AUTISM SPECTRUM DISORDER ,age at diagnosis ,access to health care ,Social Sciences ,INFANTS ,autism ,early assessment ,behavioral disciplines and activities - Abstract
Background Autism spectrum disorder can in some cases be reliably diagnosed by age 2 years, but in community settings, the mean age at diagnosis is often considerably higher. Later diagnosis has been found to be associated with lower symptom severity, lower parental socioeconomic status and fewer parental concerns. Gender differences in age at diagnosis have been examined, with mixed evidence. Methods We examined the association of child's verbal ability and gender, and parental education, with age at diagnosis in a large sample of young children with autism spectrum disorder in 18 European countries (n = 1410). Results There was considerable variation in age at diagnosis across countries. Children with better communication skills were diagnosed significantly later than non-verbal and minimally verbal children. There was also a significant interaction of gender with verbal ability on age at diagnosis, in that female children with complex phrase speech were diagnosed later than male children with the same level of verbal ability. Conclusions Our findings highlight the need to implement public awareness initiatives and training for professionals to promote early detection and, consequently, early intervention for autism spectrum disorder in Europe.
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- 2016
21. The Search for an Early Intervention Outcome Measurement Tool in Autism
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Fletcher-Watson, S., primary and McConachie, H., additional
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- 2016
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22. Validation of a rapid neurodevelopmental assessment tool for 10- to 16-year-old young adolescents in Bangladesh
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Muslima, H., primary, Khan, N. Z., additional, Shilpi, A. B., additional, Begum, D., additional, Parveen, M., additional, McConachie, H., additional, and Darmstadt, G. L., additional
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- 2016
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23. Are the health needs of young people with cerebral palsy met during transition from child to adult health care?
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Solanke, F., Colver, A., McConachie, H., and On behalf of the Transition collaborative group
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CEREBRAL palsy ,CONTINUUM of care ,FACTOR analysis ,LONGITUDINAL method ,MEDICAL care ,QUESTIONNAIRES ,RESEARCH funding ,PARENT attitudes ,DATA analysis software ,PATIENTS' attitudes ,DESCRIPTIVE statistics - Abstract
Abstract: Background: The transition from child to adult health care is a particular challenge for young people with cerebral palsy, who have a range of needs. The measurement of reported needs, and in particular unmet needs, is one means to assess the effectiveness of services. Methods: We recruited 106 young people with cerebral palsy, before transfer from child services, along with their parents to a 3‐year longitudinal study. Reported needs were measured with an 11‐item questionnaire covering speech, mobility, positioning, equipment, pain, epilepsy, weight, control of movement, bone or joint problems, curvature of the back, and eyesight. Categorical principal component analysis was used to create factor scores for bivariate and regression analyses. Results: A high level of reported needs was identified particularly for control of movement, mobility, and equipment, but these areas were generally being addressed by services. The highest areas of unmet needs were for management of pain, bone or joint problems, and speech. Analysis of unmet needs yielded two factor scores, daily living health care and medical care. Unmet needs in daily living health care were related to severity of motor impairment and to attending nonspecialist education. Unmet needs tended to increase over time but were not significantly (p > .05) related to whether the young person had transferred from child services. Conclusions: Reporting of unmet needs can indicate where service development is required, and we have shown that the approach to measurement can be improved. As the number of unmet health needs at the start of transition is considerable, unmet health needs after transition cannot all be attributed to poor transitional health care. The range and continuation of needs of young people with cerebral palsy argue for close liaison between adult services and child services and creation of models of practice to improve coordination. [ABSTRACT FROM AUTHOR]
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- 2018
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24. Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children with valid ASD diagnoses?
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Warnell, F, primary, George, B, additional, McConachie, H, additional, Johnson, M, additional, Hardy, R, additional, and Parr, J R, additional
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- 2015
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25. The Search for an Early Intervention Outcome Measurement Tool in Autism.
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Fletcher-Watson, S. and McConachie, H.
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- *
ABILITY , *AUTISM , *TRAINING , *EARLY intervention (Education) , *TREATMENT effectiveness , *RESEARCH methodology evaluation - Abstract
Evidence is accumulating that early intervention can be effective in improving the skills of young children with autism spectrum disorder. However, the science is hampered by the lack of agreed “gold standard” tools for the measurement of progress and outcome. What is required is a reliable, valid, and sensitive measure of change in the core domains of autism, which can be undertaken blind to group and time. This article explores the use of a promising measure of change, for which reliability, validity, and sensitivity to change over a lengthy period have been previously demonstrated. Pilot data indicate that, despite some sensitivity to change over a short period of time, it does not capture treatment effects more effectively than an existing diagnostic tool. Future directions for the ongoing search are suggested, including consideration of how to achieve sensitivity to differential change as well as to change over time. [ABSTRACT FROM AUTHOR]
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- 2017
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26. PP34 Self-reported quality of life in children aged less than 12 years with perinatal conditions: a systematic review
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Rankin, J, primary, Glinianaia, SV, additional, Jardine, J, additional, McConachie, H, additional, and Embleton, ND, additional
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- 2014
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27. OP64 Self-reported quality of life in 8–12 year old children born with gastroschisis: a pilot study using the KIDSCREEN questionnaire
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Rankin, J, primary, Jardine, J, additional, Glinianaia, SV, additional, McConachie, H, additional, and Embleton, ND, additional
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- 2014
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28. Mediation of 6‐year mid‐childhood follow‐up outcomes after pre‐school social communication (PACT) therapy for autistic children: randomised controlled trial
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Sophie Carruthers, Andrew Pickles, Tony Charman, Helen McConachie, Ann Le Couteur, Vicky Slonims, Patricia Howlin, Rachel Collum, Erica Salomone, Hannah Tobin, Isobel Gammer, Jessica Maxwell, Catherine Aldred, Jeremy Parr, Kathy Leadbitter, Jonathan Green, Carruthers, S, Pickles, A, Charman, T, Mcconachie, H, Le Couteur, A, Slonims, V, Howlin, P, Collum, R, Salomone, E, Tobin, H, Gammer, I, Maxwell, J, Aldred, C, Parr, J, Leadbitter, K, and Green, J
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early intervention ,Psychiatry and Mental health ,Pediatrics, Perinatology and Child Health ,developmental psychopathology ,Developmental and Educational Psychology ,mediation ,Autism spectrum disorder ,structural equation modelling - Abstract
BACKGROUND: There are very few mechanistic studies of the long-term impact of psychosocial interventions in childhood. The parent-mediated Paediatric Autism Communication Therapy (PACT) RCT showed sustained effects on autistic child outcomes from pre-school to mid-childhood. We investigated the mechanism by which the PACT intervention achieved these effects.METHODS: Of 152 children randomised to receive PACT or treatment as usual between 2 and 5 years of age, 121 (79.6%) were followed 5-6 years after the endpoint at a mean age of 10.5 years. Assessors, blind to the intervention group, measured Autism Diagnostic Observation Scale Calibrated Severity Score (ADOS CSS) for child autistic behaviours and Teacher Vineland (TVABS) for adaptive behaviour in school. Hypothesised mediators were child communication initiations with caregivers in a standard play observation (Dyadic Communication Measure for Autism, DCMA). Hypothesised moderators of mediation were baseline child non-verbal age equivalent scores (AE), communication and symbolic development (CSBS) and 'insistence on sameness' (IS). Structural equation modelling was used in a repeated measures mediation design.RESULTS: Good model fits were obtained. The treatment effect on child dyadic initiation with the caregiver was sustained through the follow-up period. Increased child initiation at treatment midpoint mediated the majority (73%) of the treatment effect on follow-up ADOS CSS. A combination of partial mediation from midpoint child initiations and the direct effect of treatment also contributed to a near-significant total effect on follow-up TVABS. No moderation of this mediation was found for AE, CSBS or IS.CONCLUSIONS: Early sustained increase in an autistic child's communication initiation with their caregiver is largely responsible for the long-term effects from PACT therapy on autistic and adaptive behaviour outcomes. This supports the theoretical logic model of PACT therapy but also illuminates fundamental causal processes of social and adaptive development in autism over time: early social engagement in autism can be improved and this can have long-term generalised outcome effects.
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- 2023
29. Use of early intervention for young children with autism spectrum disorder across Europe
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Štěpánka Beranová, Helen McConachie, Louise Gallagher, Nada Pop-Jordanova, Tony Charman, Erica Salomone, Silvana Markovska-Simoska, Christine M. Freitag, Marlene Briciet Lauritsen, Gabriella Felhosi, Jonathan Green, Anneli Kylliäinen, Herbert Roeyers, Rafał Kawa, Irma Moilanen, Jan K. Buitelaar, Bernadette Rogé, Iris J. Oosterling, Petra Warreyn, Sue Fletcher-Watson, Patricia García Primo, Sigridur Jonsdottir, Luise Poustka, Filippo Muratori, Magdalena Budisteanu, Marie Gomot, Mikael Heimann, Michele Noterdaeme, Peter B. Marschik, Joaquin Fuentes, Judith Sinzig, Fotinica Gliga, Guiomar Oliveira, Sanne Lemcke, Anett Kaale, Antonio Narzisi, Astrid M. Vicente, Frédérique Bonnet-Brilhault, Mirjam K. J. Pijl, Ricardo Canal-Bedia, Salomone, E, Beranova, S, Bonnet-Brilhault, F, Briciet Lauritsen, M, Budisteanu, M, Buitelaar, J, Canal-Bedia, R, Felhosi, G, Fletcher-Watson, S, Freitag, C, Fuentes, J, Gallagher, L, Garcia Primo, P, Gliga, F, Gomot, M, Green, J, Heimann, M, Jonsdottir, S, Kaale, A, Kawa, R, Kylliainen, A, Lemcke, S, Markovska-Simoska, S, Marschik, P, Mcconachie, H, Moilanen, I, Muratori, F, Narzisi, A, Noterdaeme, M, Oliveira, G, Oosterling, I, Pijl, M, Pop-Jordanova, N, Poustka, L, Roeyers, H, Rogé, B, Sinzig, J, Vicente, A, Warreyn, P, and Charman, T
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Male ,Language therapy ,Autism Spectrum Disorder ,Interpersonal Relation ,Psychological intervention ,Social Sciences ,FAMILIES ,Early Intervention (Education) ,law.invention ,0302 clinical medicine ,Randomized controlled trial ,PARENTS ,law ,autism ,Europe ,intervention ,use of early intervention ,Developmental and Educational Psychology ,Behavior Therapy ,SUPPORT ,Early Intervention, Educational ,Child ,Incidence (epidemiology) ,05 social sciences ,Basic Medicine ,RANDOMIZED CONTROLLED-TRIAL ,Autism spectrum disorder ,Child, Preschool ,Female ,Humans ,Speech Therapy ,Interpersonal Relations ,Psychology ,ACCESS ,Human ,050104 developmental & child psychology ,medicine.medical_specialty ,Medicinska och farmaceutiska grundvetenskaper ,03 medical and health sciences ,Interpersonal relationship ,030225 pediatrics ,Intervention (counseling) ,medicine ,0501 psychology and cognitive sciences ,Psychiatry ,Preschool ,Neurodevelopmental disorders Donders Center for Medical Neuroscience [Radboudumc 7] ,SERVICES ,medicine.disease ,Perturbações do Desenvolvimento Infantil e Saúde Mental ,Autism - Abstract
Little is known about use of early interventions for autism spectrum disorder in Europe. Parents of children with autism spectrum disorder 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 interventions were speech and language therapy (64%) and behavioural, developmental and relationship-based interventions (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 with child characteristics. These findings highlight the need to monitor use of intervention for children with autism spectrum disorder in Europe in order to contrast inequalities. Funding Agencies|COST Action - European Science Foundation [BM1004]; Innovative Medicines Initiative Joint Undertaking [115300]; European Union; EFPIA
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- 2016
30. Prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorder in Europe
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Salomone, Erica, Charman, Tony, Mcconachie, Helen, Warreyn, Petra, Muratori, Filippo, Salomone, E, Charman, T, Mcconachie, H, and Warreyn, P
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Complementary Therapies ,Male ,SYMPTOMS ,Alternative medicine ,Psychological intervention ,Autism spectrum disorder ,Complementary and alternative medicine ,Diets ,Europe ,Mind–body practices ,Supplements ,Pediatrics, Perinatology and Child Health ,Pediatrics ,FAMILIES ,CULTURE ,Mindâbody practice ,PARENTS ,Prevalence ,Medicine ,Child ,Pediatric ,High prevalence ,Perinatology and Child Health ,Child, Preschool ,TRIAL ,Female ,HEALTH ,Mind-body practices ,Psychosocial ,INTERVENTIONS ,Human ,medicine.medical_specialty ,PROFESSIONALS ,Mindâ body practices ,Intervention (counseling) ,Mindâbody practices ,Autism Spectrum Disorder ,Humans ,Infant ,Dietary Supplements ,Preschool ,Psychiatry ,Prescribed medications ,Dietary Supplement ,business.industry ,DEVELOPMENTAL-DISABILITIES ,medicine.disease ,Diet ,Complementary Therapie ,business ,Supplement - Abstract
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.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.• Use of complementary and alternative medicine (CAM) in children with autism spectrum disorder is common. • In non-EU samples, parents with higher educational level and parents of low functioning children are more likely to use CAM with their children. What is New: • This study provides the first data on prevalence and correlates of use of CAM approaches in a large sample of young children with autism in Europe (N = 1,680). • Rates of CAM use were particularly high in Eastern Europe and correlates of use varied by type of CAM across Europe.
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- 2015
31. Generalisation of Social Communication Skills by Autistic Children During Play-Based Assessments Across Home, School and an Unfamiliar Research Setting.
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Carruthers S, Charman T, Leadbitter K, Ellis C, Taylor L, Moore H, Taylor C, James K, Balabanovska M, Langhorne S, Aldred C, Slonims V, Grahame V, Howlin P, McConachie H, Parr J, Emsley R, Le Couteur A, Green J, and Pickles A
- Abstract
We investigated autistic children's generalisation of social communication over time across three settings during a play-based assessment with different adults and explore the potential moderating effects on generalisation of age, nonverbal IQ and level of restricted and repetitive behaviours. The social communication abilities of 248 autistic children (2-11 years, 21% female, 22% single parent, 60% white) from three UK sites were assessed from 1984 video interactions in three contexts with three different interaction partners (parent/home, teaching assistant/school, researcher/clinic) at baseline, midpoint (+ 7m) and endpoint (+ 12m) within the Paediatric Autism Communication Trial-Generalised (PACT-G), a parent-mediated social communication intervention. Children's midpoint social communication at home generalised to school at midpoint and to clinic at endpoint. Generalisation was stronger from home to school and clinic than school to home and clinic. Generalisation was not moderated by age, nonverbal IQ or restricted and repetitive behaviour. Broader child development did not explain the pattern of results. The current study is the largest study to date to explore generalisation with autistic children and provides novel insight into their generalisation of social communication skills. Further research is needed to gain a more comprehensive understanding of facilitators of generalisation across settings and interaction partners in order to develop targeted strategies for interventions to enhance outcomes for young autistic children., (© 2024. The Author(s).)
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- 2024
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32. Mediation of 6-year mid-childhood follow-up outcomes after pre-school social communication (PACT) therapy for autistic children: randomised controlled trial.
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Carruthers S, Pickles A, Charman T, McConachie H, Le Couteur A, Slonims V, Howlin P, Collum R, Salomone E, Tobin H, Gammer I, Maxwell J, Aldred C, Parr J, Leadbitter K, and Green J
- Subjects
- Child, Child, Preschool, Humans, Communication, Follow-Up Studies, Parents, Autism Spectrum Disorder diagnosis, Autistic Disorder therapy, Autistic Disorder psychology
- Abstract
Background: There are very few mechanistic studies of the long-term impact of psychosocial interventions in childhood. The parent-mediated Paediatric Autism Communication Therapy (PACT) RCT showed sustained effects on autistic child outcomes from pre-school to mid-childhood. We investigated the mechanism by which the PACT intervention achieved these effects., Methods: Of 152 children randomised to receive PACT or treatment as usual between 2 and 5 years of age, 121 (79.6%) were followed 5-6 years after the endpoint at a mean age of 10.5 years. Assessors, blind to the intervention group, measured Autism Diagnostic Observation Scale Calibrated Severity Score (ADOS CSS) for child autistic behaviours and Teacher Vineland (TVABS) for adaptive behaviour in school. Hypothesised mediators were child communication initiations with caregivers in a standard play observation (Dyadic Communication Measure for Autism, DCMA). Hypothesised moderators of mediation were baseline child non-verbal age equivalent scores (AE), communication and symbolic development (CSBS) and 'insistence on sameness' (IS). Structural equation modelling was used in a repeated measures mediation design., Results: Good model fits were obtained. The treatment effect on child dyadic initiation with the caregiver was sustained through the follow-up period. Increased child initiation at treatment midpoint mediated the majority (73%) of the treatment effect on follow-up ADOS CSS. A combination of partial mediation from midpoint child initiations and the direct effect of treatment also contributed to a near-significant total effect on follow-up TVABS. No moderation of this mediation was found for AE, CSBS or IS., Conclusions: Early sustained increase in an autistic child's communication initiation with their caregiver is largely responsible for the long-term effects from PACT therapy on autistic and adaptive behaviour outcomes. This supports the theoretical logic model of PACT therapy but also illuminates fundamental causal processes of social and adaptive development in autism over time: early social engagement in autism can be improved and this can have long-term generalised outcome effects., (© 2023 The Authors. Journal of Child Psychology and Psychiatry published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.)
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- 2024
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33. Treatment mechanism of the WHO caregiver skills training intervention for autism delivered in community settings.
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Settanni M, Suma K, Adamson LB, McConachie H, Servili C, and Salomone E
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- Female, Child, Humans, Male, Child, Preschool, Caregivers, World Health Organization, Autism Spectrum Disorder therapy, Autistic Disorder therapy, Child Development Disorders, Pervasive therapy
- Abstract
This study examined the mechanism of effect of the WHO Caregiver Skills Training (CST) through secondary analysis of a pilot RCT conducted in community settings. Participants were 86 caregivers (77% mothers) of children with ASD (78% male, mean age: 44.8 months) randomized to CST (n = 43) or treatment as usual (n = 43). The primary outcomes, measured at baseline (t1), immediately post-intervention (t2), and 3 months post-intervention (t3), were derived from the coding of caregiver-child free play interactions with the Brief Observation of Social-Communication Change (BOSCC) and the Joint Engagement Rating Inventory scale (JERI). At t3 positive treatment main effects had been observed for caregiver skills supportive of the interaction and for flow of the interaction (JERI), albeit only non-significant changes in the expected direction for child outcomes: autism phenotypic behaviors (BOSCC), joint engagement and availability to interact (JERI). This study tested the theory of change of CST, hypothesizing that the intervention would lead to an improvement on all child and dyad outcomes through an increase in the caregiver skills supportive of the interaction. Serial mediation analyses revealed that the effect of the intervention was significantly influenced by change in caregiver skills. Participation in the intervention led to notable increases in caregiver skills at t2 and t3, which subsequently contributed to improvements at t3 in flow of the interaction, autism phenotypic behavior, joint engagement, and availability to interact. We confirmed our a priori hypothesis showing that change in caregiver skills significantly mediated the effect of treatment on the dyad primary outcome, as well as on the other child outcomes that had shown non-significant changes in the expected direction. Implications for intervention design and policy making in the context of public health services are discussed., (© 2023 The Authors. Autism Research published by International Society for Autism Research and Wiley Periodicals LLC.)
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- 2024
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34. Pilot Randomized Controlled Trial of the WHO Caregiver Skills Training in Public Health Services in Italy.
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Salomone E, Settanni M, McConachie H, Suma K, Ferrara F, Foletti G, Salandin A, Servili C, and Adamson LB
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- Caregivers, Child, Preschool, Health Services, Humans, Male, Parents education, Pilot Projects, World Health Organization, Autism Spectrum Disorder, Parent-Child Relations
- Abstract
Parents of children with ASD (N = 86; mean age 44.8 months; 67 boys) were randomized to either WHO Caregiver Skills Training (CST) delivered in public health settings in Italy or enhanced treatment-as-usual. Primary blinded outcomes were 3-months post-intervention change scores of autism severity and engagement during caregiver-child interaction. CST was highly acceptable to caregivers and feasibly delivered by trained local clinicians. Intention-to-treat analysis showed a large and significant effect on parent skills supporting joint engagement and a smaller significant effect on flow of interaction. Expected changes in child autism severity and joint engagement did not meet statistical significance. Analysis of secondary outcomes showed a significant effect on parenting stress, self-efficacy, and child gestures. Strategies to improve the effectiveness of CST are discussed., (© 2021. The Author(s).)
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- 2022
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35. Understanding the heterogeneity of anxiety in autistic youth: A person-centered approach.
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Spackman E, Lerh JW, Rodgers J, Hollocks MJ, South M, McConachie H, Ozsivadjian A, Vaughan Van Hecke A, Libove R, Hardan AY, Leekam SR, Simonoff E, Frazier TW, Alvares GA, Schwartzman JM, Magiati I, and Uljarević M
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- Adolescent, Anxiety complications, Anxiety psychology, Anxiety Disorders psychology, Child, Child, Preschool, Female, Humans, Autism Spectrum Disorder complications, Autism Spectrum Disorder epidemiology, Autism Spectrum Disorder psychology, Autistic Disorder, Child Development Disorders, Pervasive
- Abstract
The present study aimed to examine anxiety profiles among children and adolescents on the autism spectrum. It further aimed to characterize the association between the identified anxiety profiles and key clinical and developmental variables. The Spence Children's Anxiety Scale-Parent Version (SCAS-P) data from a large international pooled sample of 870 caregivers of autistic children and adolescents (M
age = 11.6 years, SDage = 2.77; 107 females) was used. Latent profile analysis identified a three-anxiety profile solution exhibiting high entropy (0.80) and high latent profile probabilities, with good classification accuracy. Identified profiles fell along the severity spectrum and were named as the mild (n = 498), moderate (n = 272) and severe (n = 100) anxiety profiles. There were no statistically significant differences between the three anxiety profiles in terms of sex distribution. Participants in the mild profile were significantly younger than those in the severe profile, had significantly fewer social communication difficulties than youth in the moderate anxiety profile group and had significantly fewer restricted and repetitive behaviors and lower cognitive functioning scores compared to participants in moderate and severe anxiety profiles. This is the first study to move beyond identifying associations and group-level differences to exploring and identifying characteristics of anxiety-based subgroups at an individual level that differ on key clinical and developmental variables. The subgroups identified in this study are a preliminary, yet important, first step towards informing future assessment and individualized interventions aiming to support young people on the autism spectrum to reduce and manage anxiety. LAY SUMMARY: This study tried to understand if there are subgroups of autistic young people who may have similar anxiety profiles. We found that we could meaningfully group young people into three groups based on how severe the anxiety symptoms their caregivers reported were: a group with low levels of anxiety, those with moderate anxiety, and those with more severe anxiety. We also found that the young people in the mild group were younger, had fewer autism traits and lower levels of intellectual functioning than young people in the other two groups., (© 2022 International Society for Autism Research and Wiley Periodicals LLC.)- Published
- 2022
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36. An adapted social communication intervention at home and education to promote social communication change in children with severe autism: the PACT-G RCT
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Green J, Leadbitter K, Ellis C, Taylor L, Moore HL, Carruthers S, James K, Taylor C, Balabanovska M, Langhorne S, Aldred C, Slonims V, Grahame V, Parr J, Humphrey N, Howlin P, McConachie H, Le Couteur A, Charman T, Emsley R, and Pickles A
- Abstract
Background: Prior evidence suggests that behaviours closely related to the intervention delivered for autism are amenable to change, but it becomes more difficult when generalising treatment effects beyond that immediate context., Objectives: The objectives were (1) to test an early autism social communication intervention designed to promote child social communication change in the naturalistic contexts of both home and education, with an additive effect on overall child symptom outcomes, and (2) to conduct a mechanistic study investigating the transmission of treatment effects within and across contexts to an overall treatment effect., Design: The trial was a three-site, parallel-group, randomised controlled trial of the experimental treatment plus treatment as usual and treatment as usual alone. The primary intention-to-treat analysis used analysis of covariance. The mechanism analysis used regression models to test mediation of the primary outcome by parent–child and education staff (learning support assistant)–child social interactions., Setting: The study took place in three urban/semiurban regions in Manchester, Newcastle upon Tyne and London., Participants: Children aged 2–11 years who met the criteria for severe autism., Interventions: The Preschool Autism Communication Trial was adapted to parallel components within home and educational settings using in-person and remote delivery. Treatment as usual was the control condition., Main Outcome Measures: The primary outcome was autism symptoms on the Autism Diagnostic Observation schedule-2. The secondary outcomes were Brief Observation of Social Communication Change, dyadic social interaction between child and parent or learning support assistant, reported language, functional outcome and reduction in child disruptive behaviour. Outcomes were measured at baseline and at the 12-month end point in all settings; interim mechanism measurements were taken at 7 months., Results: Participants ( n = 249; 122 in the PACT-G group and 127 in the treatment-as-usual group; 51 were female and 197 were male) received a median of 10 (interquartile range 8–12) sessions at home and 8 (interquartile range 5–10) sessions in an educational setting. We found no significant treatment effects on the end-point Autism Diagnostic Observation Schedule-2 primary outcome (–0.04, 95% confidence interval –0.26 to 0.18; p = 0.734), on the end-point Brief Observation of Social Communication Change secondary outcome (–0.03, 95% confidence interval –0.31 to 0.25; p = 0.85) or on language, repetitive behaviour, adaptive behaviour and child well-being. We did find significant treatment effects on dyadic interactions (increased parent synchronous response 0.54, 95% confidence interval 0.39 to 0.69; p = 0.001); child initiations with a parent (0.27, 95% confidence interval 0.12 to 0.41; p = 0.001); learning support assistant synchronous response (0.32, 95% confidence interval 0.14 to 0.49; p = 0.001); child initiations with a learning support assistant (0.21, 95% confidence interval 0.06 to 0.36; p = 0.005); and unblinded measures of improved parental well-being and child disruptive behaviour across home and educational settings. Adult (parent/learning support assistant) synchronous responsiveness in a home/education setting improved child dyadic social initiation. The child dyadic social initiation was also associated with child symptoms on researcher Brief Observation of Social Communication Change., Limitations: The delivered sessional dosage was 83% of that planned in the home setting and 67% in the educational setting, with 5.5% of home sessions and 5% of educational sessions deemed ‘unacceptable’, particularly for remote delivery. A change of therapy learning support assistant was experienced by over one-third of children by the mid-point of the trial, by another third by the end point, and by one-fifth at both points., Conclusions: The multicomponent Paediatric Autism Communication Trial – Generalised (PACT-G) treatment for a child in a home or educational setting did not produce the hypothesised improvement in child autism symptomatology or adaptive behaviour, but did produce significant improvements in proximal adult–child reciprocal dyadic communication., Future Work: Future work will involve building on these results towards a further understanding of delivery options, dosage and multicomponent extension of social communication interventions for young children with autism in naturalistic settings., Trial Registration: Current Controlled Trials ISRCTN25378536., Funding: This project was funded by the Efficacy and Mechanism Evaluation programme, a Medical Research Council and National Institute for Health and Care Research (NIHR) partnership. This was also part funded by the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. This will be published in full in Efficacy and Mechanism Evaluation ; Vol. 9, No. 3. See the NIHR Journals Library website for further project information., (Copyright © 2022 Green et al. This work was produced by Green et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.)
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- 2022
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37. Developing the FEEDS toolkit of parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: findings from a Delphi survey and stakeholder consultation workshops.
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Taylor H, Pennington L, Morris C, Craig D, McConachie H, Cadwgan J, Sellers D, Andrew M, Smith J, Garland D, McColl E, Buswell C, Thomas J, Colver A, and Parr J
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- Adolescent, Child, Child, Preschool, Deglutition, Health Personnel, Humans, Parents, Referral and Consultation, Deafness, Deglutition Disorders therapy, Disabled Persons
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Background: Young children with neurodisability commonly experience eating, drinking and swallowing difficulties (EDSD). Little is documented about which interventions and outcomes are most appropriate for such children. We aimed to seek consensus between parents of children with neurodisability and health professionals on the appropriate interventions and outcomes to inform future clinical developments and research studies., Methods: Two populations were sampled: parents of children aged up to 12 years with neurodisability who experienced EDSD; health professionals working with children and young people (aged 0-18 years) with neurodisability with experience of EDSD. Participants had taken part in a previous national survey and were invited to take part in a Delphi survey and/or consultation workshops. Two rounds of this Delphi survey sought agreement on the appropriate interventions and outcomes for use with children with neurodisability and EDSD. Two stakeholder consultation workshops were iterative, with the findings of the first discussed at the second, and conclusions reached., Results: A total of 105 parents and 105 health professionals took part. Parents and health professionals viewed 19 interventions and 10 outcomes as essential. Interventions related to improvement in the physical aspects of a child's EDSD, behavioural changes of the child or parent, and changes in the child or family's well-being. Both parents and health professionals supported a 'toolkit' of interventions that they could use together in shared decision making to prioritise and implement timely interventions appropriate to the child., Conclusions: This study identified interventions viewed as essential to consider for improving EDSD in children with neurodisability. It also identified several key outcomes that are valued by parents and health professionals. The Focus on Early Eating, Drinking and Swallowing (FEEDS) Toolkit of interventions to improve EDSD in children with neurodisability has been developed and now requires evaluation regarding its use and effectiveness., Competing Interests: Competing interests: DS received a research grant from Nutricia Advanced Medical Nutrition UK (Wiltshire, UK) from 2017 to 2018, honorarium payments from Nutricia Advanced Medical Nutrition UK from 2015 to 2019 and an honorarium payment from Nutricia Advanced Medical Nutrition UK in 2018. MA received fees from Nutricia Advanced Medical Nutrition UK to attend a conference in which she was presenting industry partner research work and lecture fees/symposium presentation fees from Nutricia Advanced Medical Nutrition UK and Nestlé SA (Vevey, Switzerland). JC reports personal fees from Novartis Pharmaceuticals (Basel, Switzerland) and Allergan, and Ispen Pharmaceuticals (Paris, France)., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2022
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38. Combined social communication therapy at home and in education for young autistic children in England (PACT-G): a parallel, single-blind, randomised controlled trial.
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Green J, Leadbitter K, Ellis C, Taylor L, Moore HL, Carruthers S, James K, Taylor C, Balabanovska M, Langhorne S, Aldred C, Slonims V, Grahame V, Parr J, Humphrey N, Howlin P, McConachie H, Couteur AL, Charman T, Emsley R, and Pickles A
- Subjects
- Adult, Child, Child, Preschool, Female, Humans, Male, Communication, England, Quality of Life, Single-Blind Method, Treatment Outcome, Autistic Disorder psychology, Autistic Disorder therapy
- Abstract
Background: Autistic children can have difficulty generalising treatment effects beyond the immediate treatment context. Paediatric Autism Communication Therapy (PACT) has been successful when delivered in the clinic. Here we tested the Paediatric Autism Communication Therapy-Generalised (PACT-G) intervention combined between home and education settings for its overall effect and mechanistic transmission of effect across contexts., Methods: In this parallel, single-blind, randomised, controlled trial, we recruited autistic children aged 2-11 years in urban or semi-urban areas in Manchester, Newcastle, and London, England. Children needed to meet core autism criteria on Autism Diagnostic Observation Schedule-second edition (ADOS-2) and parent-rated Social Communication Questionnaire (SCQ-lifetime), and children older than 5 years were included if they had intentional communication but expressive language equivalent of age 4 years or younger. Eligible children were randomly assigned (1:1), using block randomisation (random block sizes of 2 and 4) and stratified for site, age (2-4 years vs 5-11 years), and gender, to either PACT-G plus treatment as usual or treatment as usual alone. Research assessors were masked to treatment allocation. The PACT-G intervention was delivered by a therapist in parallel to the child's parents at home and to learning-support assistants (LSA) at their place of education, using both in-person and remote sessions over a 6 month period, to optimise adult-child social interaction. Treatment as usual included any health support or intervention from education or local community services. The primary outcome was autism symptom severity using the ADOS-2, as measured by researchers, at 12 months versus baseline. Secondary outcomes were Brief Observation of Social Communication Change (BOSCC) and dyadic social interaction between child and adult across contexts, both at 12 months. Other secondary outcome measures were assessed using the following composites: language, anxiety, repetitive behaviour, adaptive behaviour, parental wellbeing, child health-related quality of life, and disruptive behaviour. Assessments were done at baseline, 7 months, and 12 months. We used an intention-to-treat (ITT) analysis of covariance for the efficacy outcome measures. Adverse events were assessed by researchers for all trial families at each contact and by therapists in the PACT-G group at each visit. This study is registered with the ISRCTN Registry, ISRCTN 25378536., Findings: Between Jan 18, 2017, and April 19, 2018, 555 children were referred and 249 were eligible, agreed to participate, and were randomly assigned to either PACT-G (n=122) or treatment as usual (n=127). One child in the PACT-G group withdrew and requested their data be removed from the study, giving an ITT population of 248 children. 51 (21%) of 248 children were female, 197 (79%) were male, 149 (60%) were White, and the mean age was 4·0 years (SD 0·6). The groups were well balanced for demographic and clinical characteristics. In the PACT-G group, parents of children received a median of 10 (IQR 8-12) home sessions and LSAs received a median of 8 (IQR 5-10) education sessions over 6 months. We found no treatment effect on the ADOS-2 primary outcome compared with treatment as usual (effect size 0·04 [95% CI -0·19 to 0·26]; p=0·74), or researcher-assessed BOSCC (0·03 [-0·25 to 0·31]), language composite (-0·03 [-0·15 to 0·10]), repetitive behaviour composite (0·00 [-0·35 to 0·35]), adaptive behaviour composite (0·01 [-0·15 to 0·18]), or child wellbeing (0·09 [-0·15 to 0·34]). PACT-G treatment improved synchronous response in both parent (0·50 [0·36 to 0·65]) and LSA (0·33 [0·16 to 0·50]), mediating increased child communication with parent (0·26 [0·12 to 0·40]) and LSA (0·20 [0·06 to 0·34]). Child dyadic communication change mediated outcome symptom alteration on BOSCC at home (indirect effect -0·78 [SE 0·34; 95% CI -1·44 to -0·11]; p=0·022) although not in education (indirect effect -0·67 [SE 0·37; 95% CI -1·40 to 0·06]; p=0·073); such an effect was not seen on ADOS-2. Treatment with PACT-G also improved the parental wellbeing composite (0·44 [0·08 to 0·79]) and the child disruptive behaviour composite in home and education (0·29 [0·01 to 0·57]). Adverse events on child behaviour and wellbeing were recorded in 13 (10%) of 127 children in the treatment as usual group (of whom four [31%] were girls) and 11 (9%) of 122 in the PACT-G group (of whom three [33%] were girls). One serious adverse event on parental mental health was recorded in the PACT-G group and was possibly study related., Interpretation: Although we found no effect on the primary outcome compared with treatment as usual, adaptation of the 12-month PACT intervention into briefer multicomponent delivery across home and education preserved the positive proximal outcomes, although smaller in effect size, and the original pattern of treatment mediation seen in clinic-delivered therapy, as well as improving parental wellbeing and child disruptive behaviours across home and school. Reasons for this reduced efficacy might be the reduced dose of each component, the effect of remote delivery, and the challenges of the delivery contexts. Caution is needed in assuming that changing delivery methods and context will preserve an original intervention efficacy for autistic children., Funding: National Institute for Health Research and Medical Research Council Efficacy and Mechanism Evaluation Award., Competing Interests: Declaration of interests JG and AP are National Institute for Health Research (NIHR) senior investigators (NIHR NF-SI-0617-10168 for JG and NF-SI-0617-10120 for AP). RE is supported by an NIHR Research Professorship (NIHR300051) and is a member of NIHR Clinical Trials Unit Standing Advisory Committee and Health Technology Assessment Clinical Evaluation and Trials Committee. JG and CA receive director's fees from a not-for-profit PACT training company IMPACT (CiC 10902031). SC is funded by the UK Medical Research Council (MRC). TC has served as a paid consultant to F Hoffmann-La Roche and Servier, and has received royalties from Sage Publications and Guilford Publications. AP receives book and questionnaire royalties from Western Psychological Services, Oxford University Press, and Imperial College Press. All other authors declare no competing interests., (Copyright © 2022 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)
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- 2022
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39. "We couldn't think in the box if we tried. We can't even find the damn box": A qualitative study of the lived experiences of autistic adults and relatives of autistic adults.
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Finch TL, Mackintosh J, Petrou A, McConachie H, Le Couteur A, Garland D, and Parr JR
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- Adult, Child, Cohort Studies, Female, Humans, Male, Palliative Care, Qualitative Research, Quality of Life, Autistic Disorder
- Abstract
Autistic children grow to become autistic adults, and autism is increasingly diagnosed in adulthood and later life. This qualitative study aimed to understand experiences of autism throughout adulthood. A national cohort study of autistic adults and relatives of autistic adults (ASC-UK), enabled purposive recruitment of a diverse sample. Semi-structured interviews were conducted with 29 autistic adults (aged 20-71 years), mostly diagnosed in adulthood, and 16 relatives (aged 31-81 years) of autistic adults diagnosed across both childhood and adulthood (including some with learning disability). Interview topics included health, relationships, education, employment, quality of life and everyday experiences. Thematic analysis of the accounts of the autistic adults identified six key themes relating to their experiences: (1) diagnosis as validating yet limiting; (2) supportive and non-supportive social agents; (3) the "invisibility" of the needs of autistic adults; (4) health in the context of autism; (5) staying 'outside' the circle; and (6) multiple lives with autism. Data from relatives about autistic adult experiences gave additional perspectives on these themes. Experiences reported in other studies-of 'difference' from others, challenges of social engagement, and learning to 'conform' to society's expectations-were evident and relevant to male and female autistic adults, across all age groups, and unrelated to stage of life when diagnosed. Some expressed disappointment with their lives, but others were proud of their achievements. Education and employment, whilst challenging for many, were also rewarding for some. Health care and social services were often experienced as inaccessible, inappropriate, or lacking understanding of the individual's needs. We conclude that greater public understanding of autism as experienced in adulthood is needed. Key priorities are improving the availability of 'appropriate' health and social care services for autistic adults and families, and providing practical support to enable enhanced participation in life., Competing Interests: The authors have declared that no competing interests exist.
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- 2022
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40. Adapting and validating the Autism Diagnostic Observation Schedule Version 2 for use with deaf children and young people.
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Phillips H, Wright B, Allgar V, McConachie H, Sweetman J, Hargate R, Hodkinson R, Bland M, George H, Hughes A, Hayward E, De Las Heras VFG, and Le Couteur A
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- Adolescent, Child, Humans, Sensitivity and Specificity, Specialization, Autism Spectrum Disorder diagnosis, Autistic Disorder
- Abstract
We report a Delphi Consensus modification and first validation study of the Autism Diagnostic Observation Schedule - 2 with deaf children and young people (ADOS-2 Deaf adaptation). Validation included 122 deaf participants (aged 2-18 years), 63 with an Autism Spectrum Disorder (ASD). This was compared to a National Institute for Health and Clinical Excellence (NICE) guideline standard clinical assessment by blinded independent specialist clinicians. Results showed overall sensitivity 73% (95%CI 60%, 83%); specificity 71% (95%CI 58%, 82%), and for the more common modules 1-3 (combined as in previous studies) sensitivity 79% (95% CI 65-89%); specificity 79% (95% CI 66-89%) suggesting this instrument will be a helpful addition for use with deaf children and young people., (© 2021. The Author(s).)
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- 2022
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41. Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study.
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Parr J, Pennington L, Taylor H, Craig D, Morris C, McConachie H, Cadwgan J, Sellers D, Andrew M, Smith J, Garland D, McColl E, Buswell C, Thomas J, and Colver A
- Subjects
- Adolescent, Child, Child, Preschool, Humans, Outcome Assessment, Health Care, Surveys and Questionnaires, Technology Assessment, Biomedical, Deglutition, Parents
- Abstract
Background: Eating, drinking and swallowing difficulties are common in young children with neurodisability. These difficulties may lead to inadequate calorie intake, which affects a child's nutrition, growth and general physical health., Objective: To examine which interventions are available that can be delivered at home by parents to improve eating, drinking and swallowing in young children with neurodisability and are suitable for investigation in pragmatic trials., Design: This was a mixed-methods study that included focus groups, surveys, an update of published systematic reviews of interventions, a systematic review of measurement properties of existing tools, evidence mapping, evidence synthesis, a Delphi survey and stakeholder workshops., Setting: The study was carried out in NHS hospitals, community services, family homes and schools., Participants: Parents of children who had neurodisability and eating, drinking and swallowing difficulties. Professionals from health and education. Young people with eating, drinking and swallowing difficulties or young people who had previously experienced eating, drinking and swallowing difficulties., Data Sources: Literature reviews; national surveys of parents and professionals; focus groups with parents, young people and professionals; and stakeholder consultation workshops., Review Methods: An update of published systematic reviews of interventions (searched July-August 2017), a mapping review (searched October 2017) and a systematic review of measurement properties using COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) methodology (searched May 2018)., Results: Significant limitations of the available research evidence regarding interventions and tools to measure outcomes were identified. A total of 947 people participated: 400 parents, 475 health professionals, 62 education professionals and 10 young people. The survey showed the wide range of interventions recommended by NHS health professionals, with parents and professionals reporting variability in the provision of these interventions. Parents and professionals considered 19 interventions as relevant because they modified eating, drinking and swallowing difficulties. Parents and professionals considered 10 outcomes as important to measure (including Nutrition, Growth and Health/safety); young people agreed that these were important outcomes. Stakeholder consultation workshops identified that project conclusions and recommendations made sense, were meaningful and were valued by parents and professionals. Parents and health professionals were positive about a proposed Focus on Early Eating, Drinking and Swallowing (FEEDS) toolkit of interventions that, through shared decision-making, could be recommended by health professionals and delivered by families., Limitations: The national surveys included large numbers of parents and professionals but, as expected, these were not representative of the UK population of parents of children with eating, drinking and swallowing difficulties. Owing to the limitations of research evidence, pragmatic decisions were made about interventions that might be included in future research and outcomes that might be measured. For instance, the reviews of research found only weak or poor evidence to support the effectiveness of interventions. The review of outcome measures found only limited low-level evidence about their psychometric properties., Conclusions: Opportunities and challenges for conducting clinical trials of the effectiveness of the FEEDS toolkit of interventions are described. Parents and professionals thought that implementation of the toolkit as part of usual NHS practice was appropriate. However, this would first require the toolkit to be operationalised through development as a complex intervention, taking account of constituent interventions, delivery strategies, implementation and manualisation. Subsequently, an evaluation of its clinical effectiveness and cost-effectiveness could be undertaken using appropriate research methods., Future Work: Initial steps include FEEDS toolkit development and evaluation of its use in clinical practice, and identification of the most robust methods to measure valued outcomes, such as Nutrition and Growth., Trial Registration: Current Controlled Trials ISRCTN10454425., Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 25, No. 22. See the NIHR Journals Library website for further project information.
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- 2021
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42. Anxiety in young people with autism spectrum disorder: Common and autism-related anxiety experiences and their associations with individual characteristics.
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Lau BY, Leong R, Uljarevic M, Lerh JW, Rodgers J, Hollocks MJ, South M, McConachie H, Ozsivadjian A, Van Hecke A, Libove R, Hardan A, Leekam S, Simonoff E, and Magiati I
- Subjects
- Adolescent, Anxiety epidemiology, Anxiety Disorders epidemiology, Child, Humans, Singapore epidemiology, United Kingdom epidemiology, Autism Spectrum Disorder epidemiology, Autistic Disorder
- Abstract
Anxiety is common in autism spectrum disorder. Many anxiety symptoms in autism spectrum disorder are consistent with Diagnostic and Statistical Manual of Mental Disorders (5th ed.) anxiety disorders (termed "common" anxieties), but others may be qualitatively different, likely relating to autism spectrum disorder traits (herein termed "autism-related" anxieties). To date, few studies have examined both "common" and "autism-related" anxiety experiences in autism spectrum disorder. We explored caregiver-reported Spence Children's Anxiety Scale-Parent version data from a multi-site (United Kingdom, Singapore, and United States) pooled database of 870 6- to 18-year-old participants with autism spectrum disorder, of whom 287 provided at least one written response to the optional open-ended Spence Children's Anxiety Scale-Parent item 39 (" Is there anything else your child is afraid of ?"). Responses were thematically coded to explore (a) common and autism-related anxiety presentations and (b) their relationship with young people's characteristics. Nearly half of the responses were autism-related anxieties (mostly sensory, uncommon, or idiosyncratic specific phobias and worries about change and unpredictability). The other half described additional common anxieties not covered in the original measure (mostly social, weather and environmental disasters, and animals). Caregivers of participants who were more severely affected by autism spectrum disorder symptoms reported more autism-related, as compared to common, additional anxieties. Implications for the assessment and understanding of anxiety in autism are discussed.
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- 2020
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43. Experience of transfer from child to adult mental health services of young people with autism spectrum disorder.
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Merrick H, King C, McConachie H, Parr JR, and Le Couteur A
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Background: Transition from child-centred to adult mental health services has been reported as challenging for young people. It can be especially difficult for young people with autism spectrum disorder (ASD) as they manage the challenges of adolescence and navigate leaving child and adolescent mental health services (CAMHS)., Aims: This study examines the predictors of transfer to adult mental health services, and using a qualitative analysis, explores the young people's experiences of transition., Method: A UK sample of 118 young people aged 14-21 years, with ASD and additional mental health problems, recruited from four National Health Service trusts were followed up every 12 months over 3 years, as they were discharged from CAMHS. Measures of mental health and rich additional contextual information (clinical, family, social, educational) were used to capture their experiences. Regression and framework analyses were used., Results: Regression analysis showed having an attention-deficit hyperactivity disorder diagnosis and taking medication were predictors of transfer from child to adult mental health services. Several features of young people's transition experience were found to be associated with positive outcomes and ongoing problems, including family factors, education transitions and levels of engagement with services., Conclusions: The findings show the importance of monitoring and identifying those young people that might be particularly at risk of negative outcomes and crisis presentations. Although some young people were able to successfully manage their mental health following discharge from CAMHS, others reported levels of unmet need and negative experiences of transition.
- Published
- 2020
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44. What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries.
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McConachie H, Wilson C, Mason D, Garland D, Parr JR, Rattazzi A, Rodgers J, Skevington S, Uljarevic M, and Magiati I
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Relevant and valid measurement is crucial in determining whether interventions and supports have improved the quality of life (QoL) of autistic people. However, it is possible that researchers' and services' use of general population QoL tools may overlook issues of specific importance. To advance methodology, we conducted a preliminary exploration of the need and basis for cross-cultural development of additional autism-specific QoL questions. Nine consultation groups with autistic adults ( n = 38) were held in Argentina, Australia, Singapore, and the United Kingdom to examine the items of the World Health Organization QoL questionnaire (WHOQOL-BREF) and the WHOQOL Disabilities add-on module. Each group discussion was transcribed and analyzed thematically to identify missing issues and nuances of particular significance to autistic people. Themes seen as important and particularly relevant to QoL of autistic people included a positive autistic identity, other people's lack of understanding of autism, sensory issues, and autistic people's contributions to society. There were notable similarities across sites indicating that creation of cross-cultural autism-specific items is likely to be possible; the themes identified could inform the focus of items for measurement of QoL. This project represents an initial step toward fuller international consultation, and subsequent development of an autism-specific module for addition to the core WHOQOL model., Lay Summary: Why was this project done?: Quality of life (QoL) refers to how satisfied a person is with their life now, taking into account their experiences and the conditions in which they live. There are questionnaires for the general public to rate their QoL, but these may ask questions in ways that are not important or relevant for autistic people; for example, some autistic people have few or no friends, but are fine with this. Also questionnaires miss out topics such as sensory overload that impact on QoL for autistic people. What was the purpose?: We wanted to try to understand whether the questions in the World Health Organization Questionnaire (WHOQOL-BREF for short), and in the optional add-on Disabilities questionnaire, were important and relevant to autistic people from different countries and cultures. We also wanted to find out whether autistic people thought there were other important topics missing from these questionnaires. What did the researchers do?: We held 9 consultation groups about the WHO questionnaire items, with 38 autistic people in 4 countries: the United Kingdom, Singapore, Australia, and Argentina. Researchers, including members of the autism community, read the typed out discussions a number of times to find common themes, especially what was particularly relevant, or topics and experiences that were missing. First we analyzed the four United Kingdom groups, and then the other five groups. What did the researchers find?: Autistic people we consulted thought that most of the existing items of the WHOQOL questionnaires were important. From the discussions, we found 13 themes that were identified as particularly relevant to QoL, including being positive about one's autistic identity, other people's (lack of) knowledge of autism, sensory issues, mental health difficulties, the nature of friendships, and supporting other people as carers or volunteers. What do these findings add to what was already known?: The discussions from the four countries were quite similar. The items from the WHO QoL questionnaires were mostly viewed as important and relevant by autistic people, but a number of issues are missing, which seem different in autism and should be included in any improved measurement of QoL. What are potential weaknesses?: The project was a first step in consultation about measuring autistic adults' QoL, involving only four countries, and all except one group conducted in English. Only one group included people with intellectual disability. How will these findings help autistic adults now or in the future?: Having good QoL is central for everyone. Our consultation found that some topics highly relevant for autistic people are not included in QoL questionnaires developed for the general population. Our findings suggest that it will be both important and possible to develop a set of internationally appropriate items for autistic people to add to the existing WHO QoL questionnaires. This would allow researchers and health workers to measure accurately the QoL of autistic adults and to be able to judge how helpful supports and services are in improving QoL., Competing Interests: No competing financial interests exist., (Copyright 2020, Mary Ann Liebert, Inc., publishers.)
- Published
- 2020
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45. Facilitating transition of young people with long-term health conditions from children's to adults' healthcare services - implications of a 5-year research programme.
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Colver A, Rapley T, Parr JR, McConachie H, Dovey-Pearce G, Couteur AL, McDonagh JE, Bennett C, Maniatopoulos G, Pearce MS, Reape D, Chater N, Gleeson H, and Vale L
- Subjects
- Adolescent, Child, Delivery of Health Care, Health Personnel, Humans, Young Adult, Transition to Adult Care
- Abstract
Background: During transition from children's to adults' healthcare, young adults with long-term conditions may show delays in psychosocial development compared to their peers without long-term conditions, and deterioration of their conditions' medical control., Methods: This paper integrates the findings, already published in 10 separate papers, of a 5-year transition research programme., Implications: There is an important role for funders (commissioners) of adults' services to fund transitional healthcare, in addition to funders of children's services who currently take responsibility.It is important that healthcare provider organisations adopt an organisation-wide approach to implementation to ensure that good practice is adopted in children's and adults' services, not just adopted by enthusiasts in some specialties. This includes provision of 'developmentally appropriate healthcare' which recognises the changing biopsychosocial developmental needs of young people.Three features of transitional healthcare were associated with improved outcomes: appropriate parent involvement, promotion of young people's confidence in managing their health and meeting the adult team before transfer. These should be maintained or introduced as a priority.Child and adult healthcare providers should routinely explore with a young person how they approach transition and personalise their clinical approach thereafter.These implications are relevant for a range of stakeholders, including funders of transitional healthcare, organisations providing transitional healthcare and clinical practitioners., (© Royal College of Physicians 2020. All rights reserved.)
- Published
- 2020
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46. A Randomised Controlled Feasibility Trial of Immersive Virtual Reality Treatment with Cognitive Behaviour Therapy for Specific Phobias in Young People with Autism Spectrum Disorder.
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Maskey M, Rodgers J, Grahame V, Glod M, Honey E, Kinnear J, Labus M, Milne J, Minos D, McConachie H, and Parr JR
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- Adolescent, Adult, Autism Spectrum Disorder complications, Child, Female, Humans, Male, Phobic Disorders complications, Autism Spectrum Disorder therapy, Cognitive Behavioral Therapy methods, Phobic Disorders therapy, Virtual Reality Exposure Therapy methods
- Abstract
We examined the feasibility and acceptability of using an immersive virtual reality environment (VRE) alongside cognitive behaviour therapy (CBT) for young people with autism experiencing specific phobia. Thirty-two participants were randomised to treatment or control. Treatment involved one session introducing CBT techniques and four VRE sessions, delivered by local clinical therapists. Change in target behaviour was independently rated. Two weeks after treatment, four treatment participants (25%) and no control participants were responders; at 6 months after treatment, six (38%) treatment and no control participants were responders. At 6 months post-treatment, symptoms had worsened for one treatment and five control (untreated) participants. Brief VRE exposure with CBT is feasible and acceptable to deliver through child clinical services and is effective for some participants.
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- 2019
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47. Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme
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Colver A, Rapley T, Parr JR, McConachie H, Dovey-Pearce G, Le Couteur A, McDonagh JE, Bennett C, Hislop J, Maniatopoulos G, Mann KD, Merrick H, Pearce MS, Reape D, and Vale L
- Abstract
Background: As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700., Objectives: Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition. Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effective and efficient features of transitional health care and (3) to determine how transitional health care should be commissioned and provided., Design, Settings and Participants: Three work packages addressed each objective. Objective 1. (i) A young people’s advisory group met monthly throughout the programme. (ii) It explored the usefulness of patient-held health information. (iii) A ‘Q-sort’ study examined how young people approached transitional health care. Objective 2. (i) We followed, for 3 years, 374 young people with type 1 diabetes mellitus (150 from five sites in England), autism spectrum disorder (118 from four sites in England) or cerebral palsy (106 from 18 sites in England and Northern Ireland). We assessed whether or not nine proposed beneficial features (PBFs) of transitional health care predicted better outcomes. (ii) We interviewed a subset of 13 young people about their transition. (iii) We undertook a discrete choice experiment and examined the efficiency of illustrative models of transition. Objective 3. (i) We interviewed staff and observed meetings in three trusts to identify the facilitators of and barriers to introducing developmentally appropriate health care (DAH). We developed a toolkit to assist the introduction of DAH. (ii) We undertook a literature review, interviews and site visits to identify the facilitators of and barriers to commissioning transitional health care. (iii) We synthesised learning on ‘what’ and ‘how’ to commission, drawing on meetings with commissioners., Main Outcome Measures: Participation in life situations, mental well-being, satisfaction with services and condition-specific outcomes., Strengths: This was a longitudinal study with a large sample; the conditions chosen were representative; non-participation and attrition appeared unlikely to introduce bias; the research on commissioning was novel; and a young person’s group was involved., Limitations: There is uncertainty about whether or not the regions and trusts in the longitudinal study were representative; however, we recruited from 27 trusts widely spread over England and Northern Ireland, which varied greatly in the number and variety of the PBFs they offered. The quality of delivery of each PBF was not assessed. Owing to the nature of the data, only exploratory rather than strict economic modelling was undertaken., Results and Conclusions: (1) Commissioners and providers regarded transition as the responsibility of children’s services. This is inappropriate, given that transition extends to approximately the age of 24 years. Our findings indicate an important role for commissioners of adults’ services to commission transitional health care, in addition to commissioners of children’s services with whom responsibility for transitional health care currently lies. (2) DAH is a crucial aspect of transitional health care. Our findings indicate the importance of health services being commissioned to ensure that providers deliver DAH across all health-care services, and that this will be facilitated by commitment from senior provider and commissioner leaders. (3) Good practice led by enthusiasts rarely generalised to other specialties or to adults’ services. This indicates the importance of NHS Trusts adopting a trust-wide approach to implementation of transitional health care. (4) Adults’ and children’s services were often not joined up. This indicates the importance of adults’ clinicians, children’s clinicians and general practitioners planning transition procedures together. (5) Young people adopted one of four broad interaction styles during transition: ‘laid back’, ‘anxious’, ‘wanting autonomy’ or ‘socially oriented’. Identifying a young person’s style would help personalise communication with them. (6) Three PBFs of transitional health care were significantly associated with better outcomes: ‘parental involvement, suiting parent and young person’, ‘promotion of a young person’s confidence in managing their health’ and ‘meeting the adult team before transfer’. (7) Maximal service uptake would be achieved by services encouraging appropriate parental involvement with young people to make decisions about their care. A service involving ‘appropriate parental involvement’ and ‘promotion of confidence in managing one’s health’ may offer good value for money., Future Work: How might the programme’s findings be implemented by commissioners and health-care providers? What are the most effective ways for primary health care to assist transition and support young people after transfer?, Study Registration: This study is registered as UKCRN 12201, UKCRN 12980, UKCRN 12731 and UKCRN 15160., Funding: The National Institute for Health Research Programme Grants for Applied Research programme., (Copyright © Queen’s Printer and Controller of HMSO 2019. This work was produced by Colver et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.)
- Published
- 2019
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48. Response to "Managing autism spectrum disorder in developing countries by utilizing existing resources: A perspective from Bangladesh".
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Khan NZ and McConachie H
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- Bangladesh, Developing Countries, Humans, Autism Spectrum Disorder
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- 2019
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49. Displaced Rohingya children at high risk for mental health problems: Findings from refugee camps within Bangladesh.
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Khan NZ, Shilpi AB, Sultana R, Sarker S, Razia S, Roy B, Arif A, Ahmed MU, Saha SC, and McConachie H
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- Adolescent, Bangladesh epidemiology, Child, Child Development, Child, Preschool, Female, Health Services Research, Health Surveys, Humans, Infant, Infant, Newborn, Male, Mental Disorders diagnosis, Mental Disorders therapy, Myanmar ethnology, Needs Assessment, Psychological Trauma diagnosis, Psychological Trauma therapy, Social Environment, Stress Disorders, Post-Traumatic diagnosis, Stress Disorders, Post-Traumatic therapy, Health Services Accessibility statistics & numerical data, Mental Disorders epidemiology, Psychological Trauma epidemiology, Refugee Camps, Refugees psychology, Refugees statistics & numerical data, Stress Disorders, Post-Traumatic epidemiology, Vulnerable Populations psychology
- Abstract
Background: The 2017 political violence against the Rohingya people in the state of Rakhine resulted in a large influx of displaced populations into Bangladesh. Given harsh conditions and experiences in Myanmar, and the harrowing journey to the border, raised levels of child neurodevelopmental disorders (NDDs) and mental health problems were expected., Methods: A team of child development professionals, physicians, psychologists, and developmental therapists screened 622 children in clinics within the refugee camps using the Developmental Screening Questionnaire (DSQ; 0-<2 years), and the Ten Questions Plus (TQP) for NDDs, and Strengths and Difficulties Questionnaire (SDQ; 2-16 years) for mental health problems. Any child positive on the DSQ or the TQP was assessed for NDDs., Results: Only 4.8% children aged 0-<2 years and 7.3% children aged >2-16 years screened positive for NDDs, comparable with a local Bangladesh population. However, 52% of children were in the abnormal range for emotional symptoms on the SDQ, and 25% abnormal for peer problems. Significant risk factors were being parentless and having lost one or more family members in the recent crisis., Conclusions: This screening study provides objective evidence of the urgent need for psychosocial support of Rohingya children within camps, with special attention to those without parents, including monitoring of their well-being and counselling of families and other care providers., (© 2018 John Wiley & Sons Ltd.)
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- 2019
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50. Cognitive outcome in childhood of birth weight discordant monochorionic twins: the long-term effects of fetal growth restriction.
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Swamy RS, McConachie H, Ng J, Rankin J, Korada M, Sturgiss S, and Embleton ND
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- Birth Weight, Child, Child, Preschool, Cognition physiology, Databases, Factual, England, Female, Humans, Male, Prospective Studies, Psychometrics methods, Twins, Monozygotic, Diseases in Twins complications, Fetal Growth Retardation physiopathology, Neurocognitive Disorders etiology
- Abstract
Aim: Intrauterine growth restriction (IUGR) is associated with poorer outcomes in later life. We used a monochorionic twin model with IUGR in one twin to determine its impact on growth and neurocognitive outcomes., Methods: Monochorionic twins with ≥20% birth weight discordance born in the north of England were eligible. Cognitive function was assessed using the British Ability Scales. The Strength and Difficulties Questionnaire was used to identify behavioural problems. Auxological measurements were collected. Generalised estimating equations were used to determine the effects of birth weight on cognition., Results: Fifty-one monochorionic twin pairs were assessed at a mean age of 6.3 years. Mean birth weight difference was 664 g at a mean gestation of 34.7 weeks. The lighter twin had a General Conceptual Ability (GCA) score that was three points lower (Twin
L -105.4 vs TwinH -108.4, 95% CI -0.9 to -5.0), and there was a significant positive association (B 0.59) of within-pair birth weight differences and GCA scores. Mathematics and memory skills showed the largest differences. The lighter twin at school age was shorter (mean difference 2.1 cm±0.7) and lighter (mean difference 1.9 kg±0.6). Equal numbers of lighter and heavier twins were reported to have behavioural issues., Conclusions: In a monochorionic twin cohort, fetal growth restriction results in lower neurocognitive scores in early childhood, and there remain significant differences in size. Longer term follow-up will be required to determine whether growth or cognitive differences persist in later child or adulthood, and whether there are any associated longer term metabolic sequelae., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)- Published
- 2018
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