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The Use of Medications for the Management of Problem Behaviours in Adults who have Intellectual [Learning] Disabilities

Evaluation of the use of medications for the treatment of behaviour disorders, including a summary of do’s and don’ts

Professor Shoumitro Deb, MBBS, FRCPsych, MD, Consultant Psychiatrist & Clinical Professor of Neuropsychiatry & Intellectual Disability, University of Birmingham (s.deb@bham.ac.uk)

Introduction           

Although the rate of functional psychiatric illness such as schizophrenia and affective disorders (Deb et al, 2001a) seems similar in adults who have intellectual disabilities (ID) to that in the general population, the rate of problem behaviour is quite high (Deb et al, 2001b). The rate of psychosis is significantly higher among adults with ID compared with the general population, as are other psychiatric diagnoses such as autistic spectrum disorders (ASD) and Attention Deficit Hyperactivity Disorders (ADHD). Therefore, the overall rate of psychopathology among adults who have ID seems much higher compared with that in the general population. Consequently, psychotropic medication is used more frequently in adults with ID. According to some estimates, between 20% and 45% people with ID receive psychotropic medications (Deb & Unwin, 2007a). Of them 14% to 30% are receiving these medications for the management of problem behaviour and not for the treatment of any psychiatric disorder (Deb and Fraser, 1994). Clarke and colleagues (1990) had previously found that 36% of adults with ID who did not have a diagnosis of mental illness were receiving psychotropic medication. 

Whereas the use of psychotropic medications in the treatment of psychiatric disorder is justified, their use in the management of problem behaviour in people with ID in the absence of a diagnosed psychiatric disorder remains controversial for the following reasons: (a) overall these medications are not licensed for use in the management of problem behaviour, (b) these medications have potential adverse effects, particularly if used over a long period of time, (c) once prescribed these medications are difficult to withdraw, and (d) overall there is very little good quality evidence available to support the use of medications under these circumstances. 

Nevertheless in a recent prospective 12 months follow-up study of 100 adults who have been seen by psychiatrists in the UK for the management of aggressive behaviour, Unwin and colleagues (2011) found more than 90% of the participants received psychotropic medications. Of them 66% received antipsychotics, 42% antiepileptics, 35% antidepressants, 14% antianxiety/ beta blockers, 43% as required medications, and 23% received medications to counteract adverse effects of other psychotropic medications.

Management of problem behaviour 

At the outset it is important to assess carefully the possible cause(s) of problem behaviours. A person with ID who has toothache or gastro oesophageal reflux disorder (both are common) and is unable to communicate this to her/his carer may behave in an aggressive manner out of frustration and persistent pain. It is, therefore, important to assess the individual's physical state carefully and provide necessary symptomatic treatment. This might help to improve the associated problem behaviour. Certain psychiatric syndromes such as psychoses and depression could manifest as problem behaviour. Psychological factors such as stress and learned dysfunctional coping strategies could predispose and precipitate problem behaviour. Behaviour therapy and psychological therapies such as Cognitive Behaviour Therapy (CBT) (albeit in a modified fashion) may be useful in the management of such problem behaviour. Certain social factors such as under or over stimulation within the immediate environment, physical and psychological abuse, life events and lack of social support may also predispose people with an ID to problem behaviour. In many cases, addressing these social environmental issues may be all that is needed to improve problem behaviour. The lack of careful assessment of these factors may lead to unnecessary prescribing of medications. 

Use of medication is only one of many strategies that could be employed to manage psychopathology and problem behaviour in people who have ID. Treatment should be provided within the context of a carefully drawn individualised care programme after proper discussion with the person with ID, their carers, and other professionals involved in the care of the person (see Hall & Deb, 2008) (see international guide by Deb et al., 2009; national guide by Unwin & Deb, 2010). The overall aim of the treatment should not only be symptom control but to provide a better quality of life for an individual with ID and his/her carers. In order to download freely from the web, accessible ‘easy read’ version of information leaflets on psychotropic medications (with accompanying audio versions) please visit www.ld-medication.bham.ac.uk (Unwin & Deb, 2007).


Evidence based practice

The treatment also has to be based on the available evidence of effectiveness of a particular treatment. Clinicians in the UK are increasingly asked to abide by the National Institute for Health and Clinical Excellence (NICE) guidelines (www.nice.org.uk), which are based primarily on type I and II evidence. Type I evidence includes good systematic reviews and meta-analysis of studies which include at least one randomised controlled trial (RCT), whilst type II evidence includes RCTs. Type III evidence includes well designed interventional studies without randomisation, type IV evidence includes well designed observational studies, and type V evidence includes expert opinion, influential reports and studies.

Treating psychiatric disorders with medication

Indications for the use of psychotropic medications for psychiatric disorders such as psychoses (e.g., schizophrenia etc.), affective disorders (e.g., depressive or bipolar disorders etc.), and anxiety related disorders (e.g., obsessive compulsive disorder, phobias etc.) should be the same among people with ID as they are for the general population (see NICE guidelines).

Treating problem behaviour with medication

Types of problem behaviour among people with ID for which medications are commonly used include aggression towards others, aggression towards property and objects (destructiveness), aggression toward self (self-injurious behaviour: SIB), severe agitation/ hyperactivity, severe stereotyped behaviour, and severe temper tantrums including screaming. 

There are published reports on the use of many psychotropic medications for the management of problem behaviour among people who have ID. These medications include antipsychotics, antidepressants, mood stabilisers including lithium and antiepileptics, psychostimulants, antianxiety medications including beta-blockers, opioid antagonists, and diets and vitamins. 

Antipsychotics

Among older type antipsychotics, chlorpromazine and haloperidol are the most widely used medications for the management of problem behaviour in adults with ID. The use of thioridazine is now severely restricted in the UK because of its potential cardio-toxicity. Most studies have reported improvement of the target behaviour following the treatment with atypical antipsychotics but these studies are often not RCT based and have major flaws in their design. For a comprehensive summary of evidence for the effectiveness of antipsychotic medications see systematic reviews by Deb et al., (2007) and Unwin & Deb, 2011. Among antipsychotic medications low dose risperidone is used most commonly followed by olanzapine, quetiapine, amisulpride, aripiprazole and clozapine (Unwin & Deb, 2008). Currently there is equivocal evidence (two RCTs showing positive result and one, Tyrer et al., 2008 showing negative result) in support of risperidone’s effectiveness among adults with ID.  However,  there is better evidence from children’s study including children with ASD with or without ID in support of risperidone’s efficacy.

 Antidepressants

Among antidepressants, most studies have reported the use of clomipramine and Selective Serotonine Reuptake Inhibitors (SSRIs) in the management of problem behaviour among adults with ID. As these medications are known to improve symptoms of depression, anxiety and obsessive behaviour, it is possible that the improvement in problem behaviour was in fact the reflection of improvement in the above symptoms. Commonly used SSRIs in people with ID are citalopram, flouxetine, paroxetine, escitalopram, sertraline etc. (Unwin & Deb, 2008). For a summary of evidence on the effectiveness of antidepressants see Sohanpal et al. (2007). Overall, there is little evidence in support of use of antidepressants. 

Mood stabilisers

There are reports of studies that have used mood stabilisers e.g., lithium, carbamazepine and sodium valproate for the management of problem behaviour in people who have ID. For a summary of evidence on the effectiveness of mood stabilisers in people with ID see Deb & Unwin (2007b). There is a number of small-scale cross-over studies on lithium involving a small number of participants. These studies showed effectiveness of lithium on some problem behaviours but not on others. These studies included primarily in-patients and used non validated outcome measures. Therefore, on the basis of these studies it is difficult to recommend use of lithium. There is a particular ethical issue in using lithium in people who cannot give an informed consent, particularly those who have severe and profound ID, as lithium is a long term treatment and carries major potential adverse effects, and mandatory blood tests may not be guaranteed in people with severe ID. Antiepileptic medications such as sodium valproate and carbamazepine may be better alternatives to lithium in this context although currently there is not enough evidence to support their use. However, lack of evidence does not mean that there is evidence that these medications are not effective. 

Antianxiety medications 

Antianxiety medications such as benzodiazepines, buspirone and also beta-blockers have been used for the management of problem behaviour in people with ID, although evidence in support of their effectiveness is lacking (Deb & Unwin, 2007b). Anxiety could be a precipitating factor for problem behaviour in people with ID. The long-term use of benzodiazepines is contraindicated because of the problems with tolerance, possible negative effects on cognition and symptoms associated with withdrawal. After the initial enthusiasm with buspirone, recent studies have shown that it has a slow onset of action and lower potency. Meanwhile, high dose beta-blockers can cause cardiac problems. For the general population certain SSRIs, SNRI (venlafaxine), an antipsychotic quetiapine and gabapentine (an antiepileptic medication) have been used (see NICE guide on the management of anxiety). These medications may also be used for the management of anxiety in people with ID. 

Opioid antagonists 

Some researchers have hypothesised that self-injurious behaviour (SIB) is sustained by the release of internal opioids in the body. This consequently produces a feeling of pleasure, which tends to perpetuate the behaviour. Therefore, treatment with anti-opioid medications such as naloxene and naltrexone have been used for the management of SIB in people with ID. However, to date the efficacy of naloxene and naltrexone has not been unequivocally proven in the management of SIB and other problem behaviour in people with ID (Deb & Unwin, 2007b).

 Psychostimulants 

Psychostimulants such as methylphenidate and dextamphetamine have been successfully used in the treatment of Attention Deficit Hyperactivity Disorder (ADHD) in children. These medications have also been used to manage problem behaviour in people with ID, although evidence in support of their use is lacking (Deb & Unwin, 2007b). As many adults with ID show symptoms of ADHD, it is possible that psychostimulants show improvement in problem behaviour by treating the underlying ADHD symptoms. The long-term effects of using psychostimulants have not been properly studied yet.

Limitations in the evidence base

Many studies have shown the effectiveness of many medications in the management of problem behaviour in adults with ID. However, we have to be cautious in the interpretation of data presented in these studies. Most of these studies are case reports that included a small number of participants. It is well known that studies with positive findings tend to find their way to publication more easily than studies that show negative findings, therefore creating a reporting bias. The number of RCTs is small, often used only small sample sizes, and therefore they provide insufficient statistical power to draw firm conclusions. The outcome measures used in these studies are often not appropriate or validated, and the method of selection of control and the experimental group is not always clear or appropriate. Also, outcome data are often not presented in an appropriate manner (e.g., most studies do not quote 'number needed to treat'). Most studies also do not distinguish symptoms of psychiatric disorders from those of problem behaviour. Overall, on the basis of available evidence, it is not possible either to recommend or to refute the use of medication for the management of problem behaviour in people with ID in the absence of a psychiatric diagnosis. There is no evidence to guide clinicians which medications may be helpful for which particular problem behaviour.

Scope for drug withdrawal

Many people who have ID receive psychotropic drugs for many years without proper assessment of their treatment. Ahmed and colleagues (2000) and Branford (1996) carried out important studies to assess which factors affect the withdrawal of psychotropic medications after a long term use. They successfully reduced antipsychotic medication, without the resurgence of problem behaviour in 52% of 36 adults with ID, of whom 33% completed the full withdrawal programme. They also found that factors such as staff perceptions, environmental factors, and staffing ratios influenced prescribing habits. In Research Unit of Pediatric Psychopharmacology (RUPP) continuation (2005) study 63% of those in whom placebo replaced risperidone showed resurgence of problem behaviour as opposed to 13% of those who continued to have risperidone in the long term. 

In the absence of adequate evidence base, clinicians are advised to consider guidelines developed for the use of psychotropic medications for the management of problem behaviour in people with ID in the absence of any psychiatric diagnosis (Reiss & Aman, 1998; Aman et al., 2000; Einfeld, 2001; Deb et al., 2006; Banks et al., 2007; Deb et al., 2009; Unwin & Deb, 2010). We have summarised in Figure 1 and 2 the common themes from the above guides. 

 

FIGURE 1: DO'S
    • Consider non-medication based first approach to manage behaviour problems in people with ID who do not have a psychiatric diagnosis.
  • Use psychotropic medications within a co-ordinated multidisciplinary care plan.
  • The type of psychotropic use should be based on adequate evidence for their effectiveness.
  • Use psychotropic medication based on a psychiatric diagnosis or a specific behavioural-pharmacological hypothesis and only after conducting complete diagnostic and functional assessment.
  • Assess capacity and obtain informed consent from the individual or a carer and establish a therapeutic alliance involving all decision-makers.
  • Track treatment efficacy by defining objective index behaviours and quality of life outcomes, and measure them using empirical methods.
  • Monitor for adverse drug effects using standardised assessment instruments.
  • Conduct clinical and data reviews on a regular basis and in a systematic way.
  • Strive to use the lowest optimal effective dose and where possible withdrawal of drugs when indicated.
  • Evaluate drug and monitoring practices through a peer or team quality review or improvement group.
  • In each follow-up consider the initial formulation and consider non medication based management and if possible consider lowering of medication or withdrawal.

 

FIGURE 2: DON'T'S
  • Don't use psychotropic drugs excessively as a substitute for meaningful psychosocial services, or in quantities that interfere with quality of life.
  • Avoid frequent drug and dose changes.
  • Avoid or minimise interclass polypharmacy to decrease the likelihood of patient non-compliance and drug adverse effects.
  • Avoid use of high dose antipsychotics.
  • Avoid long-term use of benzodiazepines.
  • Avoid long-term use of anticholinergic drugs.
  • Avoid long-term use of PRN ("as required") instructions.

References

Ahmed Z, Fraser W, Kerr M P et al. (2000) Reducing antipsychotic medication in people with a learning disability. British Journal of Psychiatry; 178: 42-46.

Aman M G, Alvarez N, Benefield W et al. (2000) Expert consensus guidelines for the treatment of psychiatric and behavioral problems in mental retardation. American Journal on Mental Retardation; 105: (3) 159-228.

Banks R., Bush A., Baker P., Bradshaw J., Carpenter P., Deb S., Joyce T., Mansell J., Xenitidis K. (Eds.) (2007) Challenging behaviour: a unified approach (Clinical and service guidelines for supporting people with learning disabilities who are at risk of receiving abusive or restrictive practices). The Royal College of Psychiatrists, The British Psychological Society and The Royal College of Speech and Language Therapists, London, UK. College Report CR 144, June, 2007.

Branford D. (1996) Factors associated with the successful or unsuccessful withdrawal of antipsychotic drug therapy prescribed for people with learning disabilities. Journal of Intellectual Disability Research; 40: 322-329.

Clarke D J, Kelley S, Thinn K & Corbett J A. (1990) Psychotropic drugs and mental retardation: I. Disabilities and the prescription of drugs for behaviour and for epilepsy in three residential settings. Journal of Mental Deficiency Research; 34: 385-395.

Deb S., Chaplin R., Sohanpal S., Unwin G. Soni R. & Lenôtre L. (2008) The effectiveness of mood stabilisers and antiepileptic medication for the management of behaviour problems in adults with intellectual disability: a systematic review. Journal of Intellectual Disability Research, 52, 2, 107-113. 

Deb S., Clarke D. & Unwin G. (2006) Using medication to manage behaviour problems among adults with a learning disability: Quick Reference Guide (QRG). University of Birmingham, MENCAP, The Royal College of Psychiatrists, London, UK. ISBN: 0855370947. www.ld-medication.bham.ac.uk

 Deb S. & Fraser W.I. (1994) The use of psychotropic medication in people with learning disability: towards rational prescribing. Human Psychopharmacology, 9, 259-272. 

Deb S., Kwok H., Bertelli M., Salvador-Carulla L., Bradley E., Torr J. & Barnhill J. (2009) International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry, 8, 3, 181-186. 

Deb S., Sohanpal S. K., Soni R., Unwin, G. & Lenôtre L. (2007) The effectiveness of antipsychotic medication in the management of behaviour problems in adults with intellectual disabilities. Journal of Intellectual Disability Research, 51, 10, 766-777.

Deb S, Thomas M & Bright C. (2001a) Mental disorder in adults with intellectual disability. I: Prevalence of functional psychiatric illness among a community-based population aged between 16 and 64 years. Journal of Intellectual Disability Research; 45 (6): 495-505.

Deb S, Thomas M & Bright C. (2001b) Mental disorder in adults with intellectual disability. 2: the rate of behaviour disorders among a community-based population aged 16 and 64 years. Journal of Intellectual Disability Research; 45 (6): 506-514. 

Deb S. & Unwin G. (2007a) Psychotropic medication for behaviour problems in people with intellectual disability: a review of the current literature. Current Opinion in Psychiatry, 20, 461-466. 

Deb S. & Unwin G. L. (2007b) Guide to using psychotropic medication for the management of behaviour problems among adults with intellectual disability: technical document. University of Birmingham, Birmingham, UK. www.ld-medication.bham.ac.uk 

Einfeld S.L. (2001) Systematic management approach to pharmacotherapy for people with learning disabilities. Advances in Psychiatric Treatment, 7, 43-49. 

Hall S. & Deb S. (2008) A qualitative study on the knowledge and views that people with learning disabilities and their carers have of psychotropic medication prescribed for behaviour problems. Advances in Mental Health and Learning Disabilities, 2, 1, 29-37. 

Oliver-Africano P. C., Dickens S., Ahmed Z., Bouras N., Cooray S., Deb S., Knapp M., Hare M., Meade M., Reece B., Bhaumik S., Harley D., Paichaud J., Regan A., Thomas D. A., Keratela S., Rao B., Dzendrowskyj T., Lenôtre L., Watson J. & Tyrer P. (2010) Overcoming the barriers experienced in conducting a medication trial in adults with aggressive challenging behaviour and intellectual disabilities. Journal of Intellectual Disability Research, 54, 1, 17-25. 

Reiss S., Aman M G. (1998) The international consensus handbook: Psychotropic medications and developmental disabilities. American Association on Mental Retardation; Washington DC, USA. 

Research Units on Pediatric Psychopharmacology (RUPP) Autism Network (2005). Risperidone Treatment of Autistic Disorder: Longer-Term Benefits and Blinded Discontinuation After 6 Months. American Journal of Psychiatry, 162, 1361-1369. 

Sohanpal S. K., Deb S., Thomas C., Soni R., Lenôtre L. & Unwin, G. (2007) The effectiveness of antidepressant medication in the management of behaviour problems in adults with intellectual disabilities: a systematic review. Journal of Intellectual Disability Research, 51, 10, 750-765. 

Tyrer P., Oliver-Africano P. C., Ahmed Z., Bouras N., Cooray S., Deb S., Murphy D., Hare M., Meade M., Reece B., Kramo K., Bhaumik S., Harley D., Regan A., Thomas D., Rao B., North B., Eliahoo J., Karatela S., Soni A. & Crawford M. (2008) Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trail. Lancet, 371, 57-63. 

Unwin G. & Deb S. (2007) Psychotropic medication easy read information leaflets. University of Birmingham. www.ld-medication.bham.ac.uk 

Unwin G. & Deb S. (2008) Use of medication for the management of behaviour problems among adults with intellectual disabilities: a clinicians’ consensus survey. American Journal on Mental Retardation, 113, 1, 19-31. 

Unwin G.L. & Deb S. (2010) The use of medication to manage problem behaviours in adults with a learning disability: A National Guideline. Advances in Mental Health in Intellectual Disabilities, 4, 3, 4-11. 

Unwin G. L. & Deb S. (2011) Efficacy of atypical antipsychotic medication in the management of behaviour problems in children with intellectual disabilities and borderline intelligence: a systematic review. Research in Developmental Disabilities, 32, 2121-2133. 

Unwin G., Rashid A. & Deb S. (2011) NOSDIID: Use of psychotropics to manage aggression in adults with ID: 12 months follow up data. Paper presented at the Royal College of Psychiatrists’ Learning Disability Faculty’s Annual Residential Conference at Bristol. 

This article was first published on the site in 2004. It was revised and updated in 2012.

 
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