What constitutes successful commissioning of transition from children's to adults' services for young people with long-term conditions and what are the challenges? An interview study.

OBJECTIVE: We explored what constitutes successful commissioning for transition and what challenges are associated with this. We aimed: (1) to identify explicit and implicit organisational structures, processes and relationships that drive commissioning around transition; (2) to identify challenges faced by commissioners; and (3) to develop a conceptual model. DESIGN: A qualitative interview study. SETTING: Commissioning and provider organisations across primary and secondary care and third sector in England, UK. PARTICIPANTS: Representatives (n=14) from clinical commissioning groups, health and well-being boards and local authorities that commission national health services (NHS) for transition from children's to adults' services in England; NHS directors, general practitioners and senior clinicians (n=9); and frontline NHS and third sector providers (n=6). RESULTS: Both commissioners and providers thought successful transition is personalised, coordinated and collaborative with a focus on broad life outcomes and actualised through building pathways and universal services. A multitude of challenges were described, including inconsistent national guidance, fragmented resources, incompatible local processes, lack of clear outcomes and professional roles and relationships. No single specific process of commissioning for transition emerged-instead complex, multi-layered, interactive processes were described. CONCLUSIONS: The findings indicate a need to consider more explicitly the impact of national policies and funding streams on commissioning for transition. Commissioners need to require care pathways that enable integrated provision for this population and seek ways to ensure that generalist community providers engage with children with long-term conditions from early on. Future research is needed to identify a core set of specific, meaningful transition outcomes that can be commissioned, measured and monitored.

Systematic review of tools to measure outcomes for young children with autism spectrum disorder.

BACKGROUND: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children's progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact. OBJECTIVES: To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents. METHODS: The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers. RESULTS: The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains 'Impairments', 'Activity Level Indicators', 'Participation', and 'Family Measures'. In review 1, 10,154 papers were sifted - 3091 by full text - and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a 'recommended battery' for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents). CONCLUSIONS: This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research. FUTURE WORK: Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention. STUDY REGISTRATION: This study is registered as PROSPERO CRD42012002223. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

New Interview and Observation Measures of the Broader Autism Phenotype: Description of Strategy and Reliability Findings for the Interview Measures.

Clinical genetic studies confirm the broader autism phenotype (BAP) in some relatives of individuals with autism, but there are few standardized assessment measures. We developed three BAP measures (informant interview, self-report interview, and impression of interviewee observational scale) and describe the development strategy and findings from the interviews. International Molecular Genetic Study of Autism Consortium data were collected from families containing at least two individuals with autism. Comparison of the informant and self-report interviews was restricted to samples in which the interviews were undertaken by different researchers from that site (251 UK informants, 119 from the Netherlands). Researchers produced vignettes that were rated blind by others. Retest reliability was assessed in 45 participants. Agreement between live scoring and vignette ratings was very high. Retest stability for the interviews was high. Factor analysis indicated a first factor comprising social-communication items and rigidity (but not other repetitive domain items), and a second factor comprised mainly of reading and spelling impairments. Whole scale Cronbach's alphas were high for both interviews. The correlation between interviews for factor 1 was moderate (adult items 0.50; childhood items 0.43); Kappa values for between-interview agreement on individual items were mainly low. The correlations between individual items and total score were moderate. The inclusion of several factor 2 items lowered the overall Cronbach's alpha for the total set. Both interview measures showed good reliability and substantial stability over time, but the findings were better for factor 1 than factor 2. We recommend factor 1 scores be used for characterising the BAP.

Earlier predictors of eating disorder symptoms in 9-year-old children. A longitudinal study.

The aim of the study was to examine predictors of eating disorder symptoms in a population based sample at the earliest age at which they can be measured using the Children's Eating Attitudes Test. Data were collected from the longitudinal Gateshead Millennium Study cohort; 609 children participated in the 7 year data sweep (and their mothers and teachers), and 589 children participated in the 9 year data sweep. Eating disorder symptoms at 9 years were higher in boys, and in children from more deprived families. Higher eating disorder symptoms were associated with more body dissatisfaction at 9 years. Higher symptoms were predicted by higher levels of dietary restraint and of emotional symptoms, but not greater body dissatisfaction, 2 years earlier. The study showed that some correlates of high eating disorder symptoms found in adolescents and adults are also found in children, before the rise in diagnosable eating disorders over the pubertal period.

The reliability and validity of the Social Responsiveness Scale in a UK general child population.

This is the first UK study to report the reliability, validity, and factor structure of the Social Responsiveness Scale (SRS) in a general population sample. Parents of 500 children (aged 5-8 years) in North East England completed the SRS. Profiles of scores were similar to USA norms, and a single factor structure was identified. Good construct validity and internal consistency were found. Children with identified special needs were found to have significantly higher SRS scores than those without. The findings suggest the SRS performs in similar ways in UK and USA general population samples of children and can be used without modification in the UK.

Do maternal ratings of appetite in infants predict later Child Eating Behaviour Questionnaire scores and body mass index?

In a longitudinal birth cohort maternal ratings of children's appetite made at 6 weeks, 12 months and 5-6 years were correlated with one another and with subscales from the Child Eating Behaviour Questionnaire (CEBQ) at 5-6 years, and body mass index (BMI) at 6-8 years. Statistically significant correlations were found between the children's appetite ratings. Appetite ratings in infancy were also correlated with the CEBQ subscale scores at 5-6 years to a limited extent, but not with the BMI at 6-8 years. The appetite rating at 5-6 years and three of the CEBQ subscales were independently associated with BMI. Children with higher levels of Emotional Over-Eating and Desire to Drink had higher BMIs, and children with higher levels of Satiety Responsiveness had lower BMIs. These results provide further evidence that there are concurrent associations between appetite ratings in childhood and BMI but suggest that appetite ratings in infancy are related only weakly to later appetite measures and do not predict later BMI.