1. Pharmacological and psychological interventions for challenging behaviour in children and young people with intellectual developmental disorders
Professor Angela Hassiotis
UCL Division of Psychiatry

2. Conflicts of Interest Honoraria for lectures
Funded research by NIHR and charities
Member of Advisory Boards, funding panels and NICE Guideline Development Groups
Editor and Associate Editor of ID journals

5. Will cover Definitions Pharmacological interventions (antipsychotics)
Psychological interventions (parent training)
New research in England
Future directions
Graphs pertaining to intervention effectiveness are reproduced from NICE Guideline 11

6. Definition of IDD
IDD is characterised by an impairment of mental ability and adaptive functioning that originates in childhood 
Limitations in conceptual, practical and social domains (DSM-5)
1% prevalence but only a quarter known to services

7. General issues in IDD Mental ill health Physical ill health
(multimorbidity)
Health inequalities
Social inequalities/adversity

8. Challenging Behaviour (CB)
Ranging from mannerisms or rituals to sexually inappropriate behaviour or physical aggression towards self, other people or objects (Royal College of Psychiatrists, 2007)
CB can threaten the quality of life as well as potentially the safety of the person with CB or others. It can be interpreted as dangerous, frightening, upsetting or annoying by others and may thus have serious consequences for the individual such as being faced with exclusion or the possibility of restrictive or aversive responses (Royal College of Psychiatrists, 2007)
Prevalence of CB
10-15% for any type of CB in people with ID (Emerson, 2001)
As high as 45% for destructive or aggressive behaviour and 82% for stereotypical or self-injurious behaviour in people with multiple and profound ID (Poppes, 2010)

9. Predictive factors Environment Person Abuse/neglect Autism
Low engagement levels
Developmentally inappropriate
Changes/care standards
Person
Autism
Severe ID
Visual impairments
Communication impairments
Health problems
Age (younger)

10. Factors predicting challenging behaviour in children with ID
Emerson and Hatton (2008): cumulative risk of exposure to indicators of social disadvantage (lone parent family, income poverty, exposure to 2 or more negative life events, poor family functioning, primary carer with no educational qualifications, potential maternal mental health issues, and poor maternal self-rating of health) are associated with increased prevalence of emotional disorders, conduct disorders and hyperactivity in children.

11. Management of CB
Pharmacological
Psychological/social

12. Pharmacological

13. Prescribing patterns Psychotropic medications
Evidence specifically for children with autism (proportion with ID)
Generally prescriptions for children exceed those for adults
Absence of mental disorder
Depending on country, antipsychotics, psychostimulants, hypnotics

14. The evidence Systematic review and meta-analysis
National Institute of Health and Care Excellence
Cochrane Handbook for Systematic Reviews of Interventions
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)

15. Methods Randomised Controlled Trials 10 participants per arm
Children and young people aged up to 18 years
ID +/- comorbid developmental disorders, e.g. autism
Pharmacological interventions aimed at reducing or managing CB, compared with treatment as usual, placebo or an alternative active intervention

16. Outcomes Challenging behaviour Adaptive functioning Quality of life
Service user and carer satisfaction
Adverse events
Mental and psychological health
Carer stress and resilience
Manual restraint
Use of psychoactive medication
Use of inpatient care

17. Obtaining literature and data management
Systematic search of databases
Examination of papers by two researchers
Authors approached for information
Inclusion of eligible papers
Statistical analyses (random effects model)
Risk of bias (sequence generation; allocation concealment; blinding of participants, assessors, and providers; selective outcome reporting; and incomplete data)

18. Results

19. N=912

20. Quality of evidence: low to very low

21. Efficacy of medication

22. Other outcomes Increased weight gain
Increased sedation
Increased prolactin
No difference in seizures
No difference in discontinuation between antipsychotics
Improved adaptive functioning in medication arm
Non significant improvement in quality of life
No data on child or parent satisfaction

23. Therefore
Antipsychotic medications (aripiprazole and risperidone*) may be effective in reducing challenging behaviour among children with intellectual disabilities in the short-term
Consequences of long term use
Significant side effects
Small studies subject to bias
Short follow up time
Only licensed drugs for irritability in ASD; other drugs used off license

25. Psychological intervention (parent training)

26. Types of interventions
Behavioural (ABA/Positive Behaviour Support)
Parent training
CBT (anger)
Mindfulness (parent wellbeing; challenging behaviour)
Sensory
Structured activity
Educational
Home vs centre based behavioural approaches (early years “Building Blocks”)
Parent education, support and skills training (parent wellbeing)

27. Preventive

28. Clinical effectiveness
EIBI more effective in reducing challenging behaviour but low quality evidence
Inconclusive about impact of home-based intervention on challenging behaviour
Overestimate of costs savings if these interventions were provided at population level
Evidence is based on children with autism without ID

30. Parent training
14 RCTs with N=799
Reproduced from NG11

31. Head to head comparisons
Reproduced from NG11

32. Resource use

33. Clinical effectiveness
Parent (group) training is more effective than controls (wait list or standard care) in reducing the severity of challenging behaviour at the end of intervention
Some evidence of improving communication and adaptive skills
Psychological interventions maybe less effective for participants with aggression and with a sensory impairment, but more effective for participants with autism

35. Cost effectiveness
Group parent training for the management of challenging behaviour in children and young people with ID is potentially cost effective, especially in children and young people with more severe levels of challenging behaviour at initiation of treatment.

36. Family carers Experience of accessing services
Experiences of medication
Experience of behavioural/other interventions
Experiences of transition from child to adult services

37. They said Assessment needs to start early
‘There is a black hole in assessing the needs of our children between the ages of 2 – 5. You cannot start early enough’
‘Sam got diagnosed way too late because nobody listened’
Assessments need to be joined up
‘Are we talking about the same child here? The assessment from the psychiatrist painted a completely different picture of June compared to her school report! How do we begin to make sense of that?’

38. They said Lack of person centred focus Medication
‘It’s about seeing the individual regardless of what they are or what their label is’
Medication
‘It all goes back to the importance of assessment. You need a good one before prescribing; that looks at everything else first; medication should be the last resort!’
‘There should be behavioural understanding before medication is prescribed’
‘It is difficult to challenge the psychiatrists or help make an informed decision if you don’t have the right information.’

39. They said Monitoring of effect and side effects Access to therapies
‘CAMHS are doling out Ritalin like smarties’
Monitoring of effect and side effects
‘annual review with other tests to check health’
Access to therapies
‘I think it is very unfair that we were able to get the assessment and ABA support he needed just because we could pay. What about families that don’t have the money?’
Working in partnership with families
‘A family’s ability to fulfil any intervention very much depends on how tired/ stressed they are, as well as the appropriate skills being shown’.

40. Vulnerable times School choice, e.g. residential
Moving school or service
Admission to hospital

41. New research
PACT study-autism and ID (UK)
JASPER (USA)

42. Early intervention and ID
Stepping Stones Triple P for preschool children with ID
UCL
Hassiotis et al

43. Future directions
Understand the mechanisms of challenging behaviour in ID
Research should aim to address gaps of previous work
Better economic data
Head to head comparisons of interventions
Increase family and service buy-in