Clinical utility of the parent-reported Strengths and Difficulties Questionnaire as a screen for emotional and behavioural difficulties in children and adolescents with intellectual disability.

We assessed the clinical utility of the parent-reported Strengths and Difficulties Questionnaire (SDQ) as a screen for emotional and behavioural difficulties in 626 children and young people with intellectual disability. Using the Developmental Behavior Checklist (DBC2-P) to determine clinical caseness, the area under the curve for the SDQ total difficulties score was 0.876 (95% CI 0.841-0.911), indicating that it is a good measure for identifying significant emotional and behavioural difficulties requiring further investigation. Analyses supported the use of the same SDQ cut-off for those with and without intellectual disability, which may assist with consistent and comparable assessment in clinical practice.

1000 Families Study, a UK multiwave cohort investigating the well-being of families of children with intellectual disabilities: cohort profile.

PURPOSE: The 1000 Families Study is a large, UK-based, cohort of families of children with intellectual disability (ID). The main use of the cohort data will be to describe and explore correlates of the well-being of families of children with ID, including parents and siblings, using cross-sectional and (eventually) longitudinal analyses. The present cohort profile intends to describe the achieved cohort. PARTICIPANTS: Over 1000 families of UK children with ID aged between 4 and 15 years 11 months (total n=1184) have been recruited. The mean age of the cohort was 9.01 years old. The cohort includes more boys (61.8%) than girls (27.0%; missing 11.1%). Parents reported that 45.5% (n=539) of the children have autism. Most respondents were a female primary caregiver (84.9%), and 78.0% were the biological mother of the cohort child with ID. The largest ethnic group for primary caregivers was White British (78.5%), over half were married and living with their partner (53.3%) and 39.3% were educated to degree level. FINDINGS TO DATE: Data were collected on family, parental and child well-being, as well as demographic information. Wave 1 data collection took place between November 2015 and January 2017, primarily through online questionnaires. Telephone interviews were also completed by 644 primary caregivers. FUTURE PLANS: Wave 2 data collection is ongoing and the research team will continue following up these families in subsequent waves, subject to funding availability. Results will be used to inform policy and practice on family and child well-being in families of children with ID. As this cohort profile aims to describe the cohort, future publications will explore relevant research questions and report key findings related to family well-being.