Table 4

Child measures used within the Cerebra 1000 Families Study

DomainMeasureScoringMeasured atWave 1 measure completeness
Child with ID behavioural and emotional well-beingStrengths and Difficulties Questionnaire (SDQ) (Parent questionnaire)42
25 items
Subscales: emotional problems, conduct problems, hyperactivity/inattention, peer relationship problems, prosocial behaviour
Caregivers are asked to assess the extent to which each statement applies to the child based on the last 6 months using a 3-point rating scale (0=not true to 2=certainly true). The items are divided into 5 subscales. A total difficulties score can be obtained by adding the first four subscale scores and categorising them into a four band system: close to average (0–13), slightly raised (14–16), high (17–19) and very high (20–40).W1, W2Complete n=985
Missing n=199
Behavioural and emotional problems of the child with IDDevelopment behaviour checklist (parent version) 46
96 items
Telephone interview
Subscales: disruptive/antisocial behaviour, self‐absorbed,
communication disturbance, anxiety, social relating
Items are scored on a 0, 1 or 2 rating scale (0=Not true as far as you know, 1=Somewhat or sometimes true, 2=Very true or often true). The Total Behaviour Problem Score is an overall measure of emotional and behavioural problems, and can detect clinically significant levels of overall emotional and behavioural disturbance (indicated by a score of 46 or greater).W1Complete n=644
Did not consent to telephone interview n=198
Missing n=342
Adaptive behaviour skills of the child with IDVineland adaptive behaviour scales—second edition (parent interview form) (VABS- II)47
30–40 min telephone interview
Communication skills
Daily living skills
Socialisation skills
An overall composite score, and domain scores, can be derived with reference to age during typical development during which children can perform the task items. Four standardised scores in total were derived for the present research: adaptive behaviour composite, communication skills, daily living skills and socialisation skills. Age equivalency scores were also calculated.W1Complete n=645
Did not consent to telephone interview n=198
Missing n=341
Adaptive behaviour skills of the child with IDThe GO4KIDDS Brief Adaptive Scale48
9 items
Items cover communication, self-help skills, social interaction and support needs. Each item is rated on a 5-point scale where higher scores indicate greater skill level and greater independence. These item scores are summed to get an overall Adaptive Behaviour score. We have amended the original GO4KIDDS to include an additional item asking about alternative methods of communication following feedback from caregivers.W2
Replaced the VABS-II interview
Not yet known
  • W1 and W2 indicate wave 1 and wave 2.

  • ID, intellectual disabilities.