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Table 1 Condition-specific measures

From: Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services

Instrument Completed by Captures Domains Measured at
ASD     
Social responsiveness scale [42] Parent Severity of ASD characteristics Awareness Baseline
Cognition
Communication
Motivation
Mannerisms
Strengths and difficulties questionnaire [43, 44] Parent and young person Emotional and behavioural problems Emotional symptoms Baseline
Conduct problems
Hyperactivity
Peer problems
Pro-social behaviour
Hospital anxiety and depression scale [45] Young person Severity of mental health problems Anxiety Depression All contacts
Children’s global assessment scale [46] Clinician Functional impairment   Baseline
Cerebral palsy     
Severity of impairments Research assistant Impairments Type of cerebral palsy, gross motor function, upper limb function, intelligence, hearing, vision, communication, feeding, seizures Baseline
Unmet health needs Parent and young person    All contacts
Diabetes     
  Research assistant Diabetes control Age at diagnosis Baseline
  Research assistant   HbA1c averaged over last year, number of admissions for ketoacidosis over last year, result of annual eye examination All contacts