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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