Advances in Mental Health and Intellectual Disabilities, 2010
This article describes a national guideline for the use of medication in the management of proble... more This article describes a national guideline for the use of medication in the management of problem behaviours in adults with an intellectual disability. As problem behaviours in this group are common and medication is often prescribed ‘off licence’, it is important that a framework is established to direct this practice. The article details a guideline development project that is of
Background Psychotropic medications are used to manage behaviour problems in adults with intelle... more Background Psychotropic medications are used to manage behaviour problems in adults with intellectual disability (ID). One group of psychotropic medication are mood stabilizers such as lithium and some antiepileptic drugs.Method A comprehensive systematic review was performed to determine the evidence base for the effectiveness of mood stabilizers in the management of behaviour problems among adults with ID. Electronic searches of PsycInfo, Medline, Embase and Cinahl databases were conducted, as well as a thorough hand search for relevant literature. We reviewed primary trials relating to adults only that satisfied strict inclusion criteria.Results One randomized controlled trial (RCT) relating to lithium use and two non-RCTs, one on lithium and the other on carbamazepine, were revealed. In addition, one prospective non-controlled trial on sodium valproate and three retrospective case series studies were discovered, of which one considered the efficacy of lithium, one valproate and one topiramate.Conclusions The current evidence lends some support for the use of lithium and some antiepileptic mood stabilizer medication for the management of behaviour problems in adults with ID. However, because most studies reviewed here are riddled with obvious methodological constrains, the findings have to be interpreted with caution.
Advances in Mental Health and Learning Disabilities, 2008
The aim of the research was to scope issues of concern at transition for young people with learni... more The aim of the research was to scope issues of concern at transition for young people with learning disabilities and mental health problems/challenging behaviour from the perspective of parent carers, using a focus group interview consisting of ten participants, including one facilitator and administrative support. The interview was tape-recorded, transcribed and thematically coded using Microsoft Word and NVivo. Two case
We have developed a Caregiver's Concerns-Quality of Life ... more We have developed a Caregiver's Concerns-Quality of Life Scale (CC-QoLS) for adults with intellectual disabilities (ID) who exhibit aggressive behaviour. The CC-QoLS is a brief (8 items in each subscale, CC and QoL respectively) proxy measure completed by caregivers. This is a specific health related quality of life instrument (HRQoL) combined with measures of caregiver's concerns for use as an outcome measure to assess clinical and cost effectiveness of interventions for aggression in adults with ID. The CC-QoLS was found to have good face validity and very good test-retest reliability with an ICC of 0.81 for CC (range 0.46-0.83 across items) and 0.80 for QoL (range 0.65-0.81 across items). Similarly, the scale had good inter-rater reliability with an ICC of 0.67 for CC (range 0.31-0.63 across items) and 0.63 for QoL (range 0.31-0.65 across items). Internal consistency for each subscale was also good (Cronbach's alpha was 0.85 for CC and 0.80 for QoL; Split-half Spearman-Brown was 0.81 for CC and 0.70 for QoL). Furthermore, the scale showed good concurrent validity with measures of severity of aggressive behaviour, namely Modified Overt Aggression Scale (MOAS) (CC: r=0.4; p≤0.01 and QoL: r=-0.2; p≤0.05) and Aberrant Behavior Checklist-Irritability subscale (ABC-I) (CC: r=0.5; p≤0.01 and QoL: r=-0.02; p≤0.05) as well as Caregiver's Uplift and Burden Scale score (<0.05). We believe that the CC-QoLS is a user friendly, easy to complete, first-ever HRQoL measure for adults with ID and aggressive behaviour with very good psychometric properties.
Advances in Mental Health and Learning Disabilities, 2008
... Reliability refers to how reproducible and consistent scales are. Validity refers to Gemma Un... more ... Reliability refers to how reproducible and consistent scales are. Validity refers to Gemma Unwin Research Associate Shoumitro Deb Clinical Professor of Neuropsychiatry and Intellectual Disability University of Birmingham College of Medical & Dental Sciences ...
Background Psychopharmacological intervention in the management of behaviour problems in adults ... more Background Psychopharmacological intervention in the management of behaviour problems in adults with intellectual disabilities (ID) has become a common treatment strategy. This has become a cause for concern, given that the evidence for its effectiveness is uncertain and most drugs are not licensed for this use.Methods A comprehensive systematic review of empirical research on the effectiveness of antipsychotic medication was conducted. Electronic and manual searches of literature were conducted. Stringent scientific methodology determined those primary trials that were worthy of inclusion.Results This review revealed one randomized controlled trial (RCT), one controlled, four uncontrolled prospective and three retrospective case series studies in adults. Additionally, two studies in both adults and children – one crossover RCT and one prospective controlled trial – were found.Conclusion Presently, there is RCT-based evidence for risperidone to be effective in both adults and children; however, this treatment carries a certain amount of risk associated with adverse effects. There is also evidence to support the use of other antipsychotics, primarily atypicals, but the evidence is based on noncontrolled case studies. There is currently not enough evidence available to recommend specific medication for specific behaviour problems. Before prescribing medication, clinicians should carry out a thorough assessment of behaviour, including its causes and consequences, and draw up a formulation providing the rationale for the prescribed intervention after considering all medication- and nonmedication-based management options.
Background A comprehensive systematic review was performed to establish the current evidence bas... more Background A comprehensive systematic review was performed to establish the current evidence base regarding the effectiveness of antidepressant medication for the management of behaviour problems in adults with intellectual disabilities.Method An electronic search of PsycInfo, Embase, Medline and Cinahl databases was conducted spanning the time period 1990 to October 2005 for primary trials. This was supplemented by hand searching and cross-referencing of relevant reviews. Strict scientific methodology requirements were formulated that the studies had to meet in order to merit inclusion in this review.Results One crossover randomized controlled trial in a small cohort, seven prospective uncontrolled trials and two retrospective studies were yielded in the search. Of these, one explored the effectiveness of the tricyclic antidepressant – clomipramine, and nine considered various selective serotonin reuptake inhibitors (SSRIs).Conclusion Evidence based primarily on a small number of either prospective or retrospective case studies that included a small number of participants and often used non-validated outcome measures for a short period of follow-up, suggests that antidepressants, particularly SSRIs, show improvement of aggression and self-injurious behaviour on average in less than 50% of cases and the rest show either no improvement or deterioration. The effect is most pronounced in the presence of an underlying anxiety or an associated diagnosis of obsessive-compulsive disorder. Most studies have highlighted the concern regarding adverse effects.
The management of problem behaviours (PB) in individuals with intellectual disabilities (ID), dev... more The management of problem behaviours (PB) in individuals with intellectual disabilities (ID), developmental disabilities (DD) and/or autistic spectrum disorders (ASD) can be challenging. Antipsychotic medications are commonly prescribed where other strategies have failed. A systematic review (SR) was conducted to establish the research evidence for the efficacy of aripiprazole in the management of PB in adults and children with ID, DD and/or ASD. Although included studies supported the efficacy of aripiprazole for this indication, the overall quality of studies was poor. Of the 20 studies included in this systematic review there were only two randomised controlled trials (RCTs) on children with ASD and/or ID/DD, both of which were conducted by the pharmaceutical company that manufactures aripiprazole, and it is not clear whether a number of same participants were included in both RCTs. One of the RCTs was extended into an open label long term follow up, which showed that aripiprazole's efficacy lasted over 52 weeks and the adverse effects were tolerable. Four studies were open label prospective studies, 11 were retrospective case reports which included four single case reports, and two were prospective case series. Most studies reported adverse effects from aripiprazole in the form of weight gain, increased appetite, sedation, tiredness, drooling and tremor. However, aripiprazole improved serum prolactin level in some participants and overall did not show any adverse effect on QTc interval. There is a need for more carefully designed RCTs into the use of aripiprazole in the management of PB in people with ID/DD and/or ASD, which should be carried out independent of pharmaceutical companies.
Journal of Mental Health Research in Intellectual Disabilities, 2011
The purpose of this study was to investigate the experience of family caregivers caring for adult... more The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and assessment scales. Data were collected on the personal
... arousal approaches. I am not going to list names, butI ratherthank you for yourdedication and... more ... arousal approaches. I am not going to list names, butI ratherthank you for yourdedication and passion. Iam especiallyindebted to Professor Peter Sturmey for his practical advice and unflinching academic support. Regine Anker ...
A high proportion of people with intellectual disability have behaviour problems and psychotropic... more A high proportion of people with intellectual disability have behaviour problems and psychotropic medication is a commonly used management strategy for these behaviours, despite lack of good-quality evidence to support this practice. In recent years, one randomized controlled trial among adults and four on children with intellectual disability have been published showing effectiveness of low-dose risperidone in the management of behaviour problems as compared with placebo. Most of these randomized controlled trials are of good quality and included a reasonable number of participants. Most of these studies showed adverse effects, however, somnolence and weight gain particularly being associated with risperidone treatment. Most of the evidence on other psychotropic medications such as antidepressants, mood stabilizers, antianxiety drugs and opioid antagonists is difficult to interpret because it is based primarily on small case studies. There is growing evidence in support of some antipsychotic medication, particularly the atypical antipsychotic, risperidone. Many of the studies of effectiveness included in this review have methodological flaws however. Therefore, the results need to be interpreted with caution. Furthermore, the paucity of evidence for some groups of medication does not necessarily mean that these medications are ineffective, but rather that their use is not currently supported by good-quality research.
ABSTRACT Accessible summary• Doctors prescribe people with learning disabilities medicine for a b... more ABSTRACT Accessible summary• Doctors prescribe people with learning disabilities medicine for a behavioural problem. The behaviours are things like hitting other people, screaming and breaking things.• Doctors and nurses should give people information about the medicine that has been prescribed to them and asked whether they agree to take the medicine.• Doctors who prescribe medicine for behavioural problems should write in the case notes what they have done.SummaryThe aim was to investigate prescribing practices surrounding the use of medication for the management of behavioural problems in adults with intellectual disabilities with reference to a national guideline development project. A case note review methodology was employed to explore adherence to the audit criteria that were derived from the recommendations made in the guideline. A total of 154 cases were identified as meeting the inclusion criteria. There was some variation in adherence to the examined audit criteria with some areas achieving high compliance whereas others were deemed as lacking. Such areas achieving high compliance included assessment of the behaviour, assessment of surrounding behavioural, medical, psychological/psychiatric and social issues and communication of the treatment plan to other relevant professionals. However, the assessment of capacity issues and acquizition of consent or assent were rarely documented. The results highlighted certain areas of clinical practice that may need to be formally documented in patient case notes in order to provide evidence of the quality of healthcare an individual has received.
Current prescribing preferences among relevant experts regarding the use of psychotropic medicati... more Current prescribing preferences among relevant experts regarding the use of psychotropic medication for the management of behavior problems in adults with intellectual disabilities in the absence of a diagnosed psychiatric illness was defined. We used a questionnaire design to synthesize the preferences of a large group, namely, clinical psychiatrists, thereby establishing a consensus. A total of 108 completed questionnaires were analyzed. A very strong preference for the use of nonmedication-based interventions was established. Of the medication options presented, atypical antipsychotics were most favored, with Risperidone the most preferred option from within this group. Citalopram was the most preferred antidepressant and Carbamazepine, the most preferred mood stabilizer/antiepileptic.
Advances in Mental Health and Intellectual Disabilities, 2010
This article describes a national guideline for the use of medication in the management of proble... more This article describes a national guideline for the use of medication in the management of problem behaviours in adults with an intellectual disability. As problem behaviours in this group are common and medication is often prescribed ‘off licence’, it is important that a framework is established to direct this practice. The article details a guideline development project that is of
Background Psychotropic medications are used to manage behaviour problems in adults with intelle... more Background Psychotropic medications are used to manage behaviour problems in adults with intellectual disability (ID). One group of psychotropic medication are mood stabilizers such as lithium and some antiepileptic drugs.Method A comprehensive systematic review was performed to determine the evidence base for the effectiveness of mood stabilizers in the management of behaviour problems among adults with ID. Electronic searches of PsycInfo, Medline, Embase and Cinahl databases were conducted, as well as a thorough hand search for relevant literature. We reviewed primary trials relating to adults only that satisfied strict inclusion criteria.Results One randomized controlled trial (RCT) relating to lithium use and two non-RCTs, one on lithium and the other on carbamazepine, were revealed. In addition, one prospective non-controlled trial on sodium valproate and three retrospective case series studies were discovered, of which one considered the efficacy of lithium, one valproate and one topiramate.Conclusions The current evidence lends some support for the use of lithium and some antiepileptic mood stabilizer medication for the management of behaviour problems in adults with ID. However, because most studies reviewed here are riddled with obvious methodological constrains, the findings have to be interpreted with caution.
Advances in Mental Health and Learning Disabilities, 2008
The aim of the research was to scope issues of concern at transition for young people with learni... more The aim of the research was to scope issues of concern at transition for young people with learning disabilities and mental health problems/challenging behaviour from the perspective of parent carers, using a focus group interview consisting of ten participants, including one facilitator and administrative support. The interview was tape-recorded, transcribed and thematically coded using Microsoft Word and NVivo. Two case
We have developed a Caregiver's Concerns-Quality of Life ... more We have developed a Caregiver's Concerns-Quality of Life Scale (CC-QoLS) for adults with intellectual disabilities (ID) who exhibit aggressive behaviour. The CC-QoLS is a brief (8 items in each subscale, CC and QoL respectively) proxy measure completed by caregivers. This is a specific health related quality of life instrument (HRQoL) combined with measures of caregiver's concerns for use as an outcome measure to assess clinical and cost effectiveness of interventions for aggression in adults with ID. The CC-QoLS was found to have good face validity and very good test-retest reliability with an ICC of 0.81 for CC (range 0.46-0.83 across items) and 0.80 for QoL (range 0.65-0.81 across items). Similarly, the scale had good inter-rater reliability with an ICC of 0.67 for CC (range 0.31-0.63 across items) and 0.63 for QoL (range 0.31-0.65 across items). Internal consistency for each subscale was also good (Cronbach's alpha was 0.85 for CC and 0.80 for QoL; Split-half Spearman-Brown was 0.81 for CC and 0.70 for QoL). Furthermore, the scale showed good concurrent validity with measures of severity of aggressive behaviour, namely Modified Overt Aggression Scale (MOAS) (CC: r=0.4; p≤0.01 and QoL: r=-0.2; p≤0.05) and Aberrant Behavior Checklist-Irritability subscale (ABC-I) (CC: r=0.5; p≤0.01 and QoL: r=-0.02; p≤0.05) as well as Caregiver's Uplift and Burden Scale score (<0.05). We believe that the CC-QoLS is a user friendly, easy to complete, first-ever HRQoL measure for adults with ID and aggressive behaviour with very good psychometric properties.
Advances in Mental Health and Learning Disabilities, 2008
... Reliability refers to how reproducible and consistent scales are. Validity refers to Gemma Un... more ... Reliability refers to how reproducible and consistent scales are. Validity refers to Gemma Unwin Research Associate Shoumitro Deb Clinical Professor of Neuropsychiatry and Intellectual Disability University of Birmingham College of Medical & Dental Sciences ...
Background Psychopharmacological intervention in the management of behaviour problems in adults ... more Background Psychopharmacological intervention in the management of behaviour problems in adults with intellectual disabilities (ID) has become a common treatment strategy. This has become a cause for concern, given that the evidence for its effectiveness is uncertain and most drugs are not licensed for this use.Methods A comprehensive systematic review of empirical research on the effectiveness of antipsychotic medication was conducted. Electronic and manual searches of literature were conducted. Stringent scientific methodology determined those primary trials that were worthy of inclusion.Results This review revealed one randomized controlled trial (RCT), one controlled, four uncontrolled prospective and three retrospective case series studies in adults. Additionally, two studies in both adults and children – one crossover RCT and one prospective controlled trial – were found.Conclusion Presently, there is RCT-based evidence for risperidone to be effective in both adults and children; however, this treatment carries a certain amount of risk associated with adverse effects. There is also evidence to support the use of other antipsychotics, primarily atypicals, but the evidence is based on noncontrolled case studies. There is currently not enough evidence available to recommend specific medication for specific behaviour problems. Before prescribing medication, clinicians should carry out a thorough assessment of behaviour, including its causes and consequences, and draw up a formulation providing the rationale for the prescribed intervention after considering all medication- and nonmedication-based management options.
Background A comprehensive systematic review was performed to establish the current evidence bas... more Background A comprehensive systematic review was performed to establish the current evidence base regarding the effectiveness of antidepressant medication for the management of behaviour problems in adults with intellectual disabilities.Method An electronic search of PsycInfo, Embase, Medline and Cinahl databases was conducted spanning the time period 1990 to October 2005 for primary trials. This was supplemented by hand searching and cross-referencing of relevant reviews. Strict scientific methodology requirements were formulated that the studies had to meet in order to merit inclusion in this review.Results One crossover randomized controlled trial in a small cohort, seven prospective uncontrolled trials and two retrospective studies were yielded in the search. Of these, one explored the effectiveness of the tricyclic antidepressant – clomipramine, and nine considered various selective serotonin reuptake inhibitors (SSRIs).Conclusion Evidence based primarily on a small number of either prospective or retrospective case studies that included a small number of participants and often used non-validated outcome measures for a short period of follow-up, suggests that antidepressants, particularly SSRIs, show improvement of aggression and self-injurious behaviour on average in less than 50% of cases and the rest show either no improvement or deterioration. The effect is most pronounced in the presence of an underlying anxiety or an associated diagnosis of obsessive-compulsive disorder. Most studies have highlighted the concern regarding adverse effects.
The management of problem behaviours (PB) in individuals with intellectual disabilities (ID), dev... more The management of problem behaviours (PB) in individuals with intellectual disabilities (ID), developmental disabilities (DD) and/or autistic spectrum disorders (ASD) can be challenging. Antipsychotic medications are commonly prescribed where other strategies have failed. A systematic review (SR) was conducted to establish the research evidence for the efficacy of aripiprazole in the management of PB in adults and children with ID, DD and/or ASD. Although included studies supported the efficacy of aripiprazole for this indication, the overall quality of studies was poor. Of the 20 studies included in this systematic review there were only two randomised controlled trials (RCTs) on children with ASD and/or ID/DD, both of which were conducted by the pharmaceutical company that manufactures aripiprazole, and it is not clear whether a number of same participants were included in both RCTs. One of the RCTs was extended into an open label long term follow up, which showed that aripiprazole's efficacy lasted over 52 weeks and the adverse effects were tolerable. Four studies were open label prospective studies, 11 were retrospective case reports which included four single case reports, and two were prospective case series. Most studies reported adverse effects from aripiprazole in the form of weight gain, increased appetite, sedation, tiredness, drooling and tremor. However, aripiprazole improved serum prolactin level in some participants and overall did not show any adverse effect on QTc interval. There is a need for more carefully designed RCTs into the use of aripiprazole in the management of PB in people with ID/DD and/or ASD, which should be carried out independent of pharmaceutical companies.
Journal of Mental Health Research in Intellectual Disabilities, 2011
The purpose of this study was to investigate the experience of family caregivers caring for adult... more The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and assessment scales. Data were collected on the personal
... arousal approaches. I am not going to list names, butI ratherthank you for yourdedication and... more ... arousal approaches. I am not going to list names, butI ratherthank you for yourdedication and passion. Iam especiallyindebted to Professor Peter Sturmey for his practical advice and unflinching academic support. Regine Anker ...
A high proportion of people with intellectual disability have behaviour problems and psychotropic... more A high proportion of people with intellectual disability have behaviour problems and psychotropic medication is a commonly used management strategy for these behaviours, despite lack of good-quality evidence to support this practice. In recent years, one randomized controlled trial among adults and four on children with intellectual disability have been published showing effectiveness of low-dose risperidone in the management of behaviour problems as compared with placebo. Most of these randomized controlled trials are of good quality and included a reasonable number of participants. Most of these studies showed adverse effects, however, somnolence and weight gain particularly being associated with risperidone treatment. Most of the evidence on other psychotropic medications such as antidepressants, mood stabilizers, antianxiety drugs and opioid antagonists is difficult to interpret because it is based primarily on small case studies. There is growing evidence in support of some antipsychotic medication, particularly the atypical antipsychotic, risperidone. Many of the studies of effectiveness included in this review have methodological flaws however. Therefore, the results need to be interpreted with caution. Furthermore, the paucity of evidence for some groups of medication does not necessarily mean that these medications are ineffective, but rather that their use is not currently supported by good-quality research.
ABSTRACT Accessible summary• Doctors prescribe people with learning disabilities medicine for a b... more ABSTRACT Accessible summary• Doctors prescribe people with learning disabilities medicine for a behavioural problem. The behaviours are things like hitting other people, screaming and breaking things.• Doctors and nurses should give people information about the medicine that has been prescribed to them and asked whether they agree to take the medicine.• Doctors who prescribe medicine for behavioural problems should write in the case notes what they have done.SummaryThe aim was to investigate prescribing practices surrounding the use of medication for the management of behavioural problems in adults with intellectual disabilities with reference to a national guideline development project. A case note review methodology was employed to explore adherence to the audit criteria that were derived from the recommendations made in the guideline. A total of 154 cases were identified as meeting the inclusion criteria. There was some variation in adherence to the examined audit criteria with some areas achieving high compliance whereas others were deemed as lacking. Such areas achieving high compliance included assessment of the behaviour, assessment of surrounding behavioural, medical, psychological/psychiatric and social issues and communication of the treatment plan to other relevant professionals. However, the assessment of capacity issues and acquizition of consent or assent were rarely documented. The results highlighted certain areas of clinical practice that may need to be formally documented in patient case notes in order to provide evidence of the quality of healthcare an individual has received.
Current prescribing preferences among relevant experts regarding the use of psychotropic medicati... more Current prescribing preferences among relevant experts regarding the use of psychotropic medication for the management of behavior problems in adults with intellectual disabilities in the absence of a diagnosed psychiatric illness was defined. We used a questionnaire design to synthesize the preferences of a large group, namely, clinical psychiatrists, thereby establishing a consensus. A total of 108 completed questionnaires were analyzed. A very strong preference for the use of nonmedication-based interventions was established. Of the medication options presented, atypical antipsychotics were most favored, with Risperidone the most preferred option from within this group. Citalopram was the most preferred antidepressant and Carbamazepine, the most preferred mood stabilizer/antiepileptic.
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