Pharmacological and psychological interventions for challenging behaviour in children and young people with intellectual developmental disorders Professor.

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Presentation transcript:

Pharmacological and psychological interventions for challenging behaviour in children and young people with intellectual developmental disorders Professor Angela Hassiotis UCL Division of Psychiatry a.hassiotis@ucl.ac.uk

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

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

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

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

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)

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)

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.

Management of CB Pharmacological Psychological/social

Pharmacological

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

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)

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

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

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)

Results

N=912

Quality of evidence: low to very low

Efficacy of medication

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

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

Psychological intervention (parent training)

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)

Preventive

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

Parent training 14 RCTs with N=799 Reproduced from NG11

Head to head comparisons Reproduced from NG11

Resource use

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

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.

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

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?’

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.’

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’.

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

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

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

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