POMH-UK Topic 9a baseline report Use of antipsychotic medication in people with a learning disability September 2009 Prepared by the Prescribing Observatory for Mental Health-UK for Coventry and Warwickshire Partnership Trust. Please use the following to cite this report: Prescribing Observatory for Mental Health (2009). Topic 9a baseline report. Use of antipsychotic medication in people with a learning disability. Prescribing Observatory for Mental Health, CRTU082 (data on file).
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Executive Summary Background The Prescribing Observatory for Mental Health (POMH-UK) runs national auditbased quality improvement programmes open to all specialist mental health services in the UK. The aim is to help mental health services improve prescribing practice in discrete areas ( Topics ). This report presents the results of the baseline audit for Topic 9, a quality improvement programme addressing the use of antipsychotic medication in people with a learning disability. Data are presented at national, Trust and team level. Audit standards 1. The indication for treatment with antipsychotic medication should be documented in the clinical records (Deb, 2006). 2. The continuing need for antipsychotic medication should be reviewed at least once a year (Deb, 2006). 3. Side effects of antipsychotic medication should be reviewed at least once a year. This review should include assessment for the presence of extrapyramidal side effects (EPS), and screening for the 4 aspects of the metabolic syndrome: obesity, hypertension, diabetes and dyslipidaemia (NICE clinical guidelines CG82, 2009). Sample 145 clinical teams from thirty-nine specialist mental health Trusts participated in the audit, submitting data for 2,319 patients, all of whom had a diagnosis of learning disability and were prescribed one or more antipsychotics. Antipsychotic treatment had been initiated within the last year in 328 patients; and initiated over 12 months ago in 1,991 patients. This is the largest audit of antipsychotic prescribing in people with a learning disability that has been conducted to date. What happens next? 1. POMH will consider developing bespoke change interventions to be provided to each participating Trust, including: PowerPoint slide sets summarising the benchmarked findings, customised for each participating Trust; Opportunities for sharing good practice. 2. A re-audit will be conducted in January 2011. 2
Key findings 1. For patients in whom antipsychotic treatment was initiated less than 12 months ago (n=328), the indication for treatment was clearly described in 93% of the clinical records. 2. The most common indications for antipsychotic prescribing in the total national sample (n=2,319) were comorbid psychotic disorder (42%), followed by anxiety and agitation (42%), and overt aggression (38%). 3. Of those patients in whom antipsychotic treatment was initiated more than 12 months ago (n=1,991), 96% had their continuing need for antipsychotic medication reviewed in the last year. 4. Oral risperidone was the most commonly used antipsychotic, being prescribed for 40% of the total national sample. Olanzapine was prescribed for 20% of patients, and chlorpromazine, haloperidol and quetiapine for 10% each. 5. Only 4% of the total national sample were prescribed a high dose antipsychotic, and 15% were prescribed a combination of antipsychotics. 6. In addition to an antipsychotic, almost three quarters (73%) of patients were prescribed at least one other drug for the treatment of mental illness, behavioural problems or epilepsy. 7. For those patients in whom antipsychotic treatment was initiated more than 12 months ago (n=1,991), documented evidence of side effect assessment was as follows: - Blood glucose: 60% of patients (range across Trusts 11-100%) - Lipid profile: 57% of patients (12-100%) - Weight/BMI: 56% of patients (5-100%) - Extrapyramidal (motor) side effects: 41% of patients (0-100%) - Blood pressure: 37% of patients (0-100%). 8. Of the side effect assessments listed in point 7 above, 19% of patients had no documented evidence of any of them being conducted in the last year. 14% of patients had evidence of 1 assessment, 16% had evidence of 2, and 52% had evidence of 3 or more. Conclusions The indications for prescribing antipsychotic medication were clearly documented in the clinical records. High doses and combinations of antipsychotics are prescribed less commonly than in adult mental health services (*see references below). The continuing need for antipsychotic medication was regularly reviewed and documented in almost all patients in this sample. The high proportion of patients having medicines changed at review suggests thoughtful and thorough practice in this area. In just under three-quarters of patents, a general statement regarding the presence or absence of side effects had been documented in the last year; however, documented evidence of systematic monitoring across a range of side effects was far less common. Potentially remediable physical health problems may therefore not be detected. *Prescribing Observatory for Mental Health (2009). Topic 1 report 1d. Prescribing of high-dose and combination antipsychotics on adult acute and intensive care wards: supplementary audit. Prescribing Observatory for Mental Health, CRTU071. *Prescribing Observatory for Mental Health (2008). Topic 3 report 3b. Prescribing of high-dose and combined antipsychotics for patients on forensic wards: re-audit. Prescribing Observatory for Mental Health, CRTU060 3
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Table of contents Executive Summary... 2 Background... 2 Audit standards... 2 Sample... 2 What happens next?... 2 Key findings... 3 Conclusions... 3 Table of contents... 5 Introduction... 10 POMH-UK... 10 How to use this report... 10 Further analysis of your Trust s data... 10 Clinical background... 11 Audit standards... 13 Method... 14 1. National level results... 16 1.1: Patient demographic and clinical characteristics... 17 1.2: Initiation of treatment with antipsychotic medication... 18 1.3: Indications for treatment with antipsychotic medication... 19 1.4: Antipsychotic prescribing practice... 23 1.5: The use of other medicines to treat mental illness, behavioural problems or epilepsy... 25 1.6: Reviewing medicines and side effects... 26 1.6.1: Medicine review... 26 1.6.2: Side effect monitoring... 27 2. Trust level results... 30 2.1: Patient demographic and clinical characteristics... 31 3. Clinical team level results... 44 Appendix A: Data Ownership... 50 Appendix B: Participating Trusts... 52 Appendix C: Audit data collection guide and form... 54 Appendix D: References... 62 Appendix E: POMH-UK Topic 9a Advisory Group... 64 5
List of Figures Figure 1: Proportion of people with co-morbid diagnoses, across mild/borderline, moderate and severe/profound diagnostic subsamples (n=2,319)... 22 Figure 2: Indication profiles for the most 5 most commonly prescribed antipsychotics... 24 Figure 3: Documentation of decision at medication review conducted within the last 12 months.... 26 Figure 4: Proportion of males and females for each Trust and the total national sample... 32 Figure 5: Distribution of the three most common ethnic groups by Trust and in the total national sample... 32 Figure 6: Patients learning disability severity by Trust and in the total national sample... 33 Figure 7: Patients co-morbid psychiatric diagnoses by Trust and in the total national sample... 33 Figure 8: Proportion of patients in each Trust for whom the indication for antipsychotic prescribing is clearly documented... 34 Figure 9: Proportion of patients in each Trust for whom the continuing need for antipsychotic medication was reviewed in the last year... 35 Figure 10: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of a general assessment of side effects in the last year.... 36 Figure 11: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of EPS in the last year.... 37 Figure 12: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of weight change in the last year.... 38 Figure 13: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of blood pressure in the last year.... 39 6
Figure 14: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of blood glucose in the last year.... 40 Figure 15: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of lipid profile in the last year.... 41 Figure 16: Proportion of patients receiving antipsychotic treatment for under a year (n=12) in each team for whom the indication for antipsychotic prescribing is clearly documented... 45 Figure 17: Proportion of patients receiving antipsychotic treatment for over a year (n=9) in each team for whom the continuing need for antipsychotic medication was reviewed in the last year... 45 Figure 18: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of a general assessment of side effects in the last year.... 46 Figure 19: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of EPS in the last year.... 46 Figure 20: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of weight change in the last year.... 47 Figure 21: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of blood pressure in the last year.... 47 Figure 22: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of blood glucose in the last year.... 48 Figure 23: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of lipid profile in the last year.... 48 7
List of Tables Table 1: Clinical and demographic characteristics of the total patient sample and LD severity subsamples... 17 Table 2: Origin of antipsychotic treatment initiation where this occurred within the last year (n=328); across mild/borderline, moderate and severe/profound LD subsamples... 18 Table 3: Documented clinical indications for prescribing antipsychotic medication in patients whose treatment was initiated in the previous 12 months... 20 Table 4: Documented clinical indications for prescribing antipsychotic medication in patients whose treatment was initiated more than 12 months ago... 20 Table 5: Perceived complexity of disorder, as indicated by LD severity, the number of antipsychotics prescribed and the number of indications per person, in the total national sample (TNS: n=2,319)... 21 Table 6: Dosing details for the most 5 most commonly prescribed antipsychotics... 23 Table 7: Proportion of patients in the total national sample prescribed additional medication (n=2,319)... 25 Table 8: Nature of documented evidence in the clinical records of clinical assessment of side effects in the last year (n=1,991)... 27 Table 9: Proportions of patients with documented evidence in their clinical records of EPS and weight gain assessment in the last year (n=1,991)... 27 Table 10: Proportion of patients with documented evidence in their clinical records of monitoring blood pressure, blood glucose and lipid profile in the last year (n=1,991)... 28 Table 11: Nature of documented evidence in the clinical records of clinical assessment of side effects in the last year (n=1,991)... 28 Table 12: Number of clinical teams and patient records submitted by each participating Trust... 31 8
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Introduction POMH-UK The Prescribing Observatory for Mental Health (POMH-UK) runs national auditbased quality improvement programmes open to all specialist mental health services in the UK. The aim is to help mental health services improve prescribing practice in discrete areas ( Topics ). This report presents the baseline results for a quality improvement programme (Topic 9) addressing the use of antipsychotic medication in people with a learning disability. How to use this report Data from each clinic or Trust are presented by code only. Your Trust code is 40 The POMH-UK Central Project Team does not know the identity of individual teams. Only the Local Project Team lead for your Trust has the key to team codes for your Trust. You should contact this person if you need to identify data for your own particular team. Further analysis of your Trust s data Ownership of data submitted to POMH-UK is retained by the Trust that provided it. See Appendix A for further information on data ownership. An Excel file containing the data submitted by your Trust has been made available to your Local Project Team lead. Please contact this person if you wish to conduct further analyses on your data. 10
Clinical background Although the use of antipsychotic medication for psychotic and related illnesses in people with a learning disability (LD) is relatively uncontroversial, their common use in the management of behavioural problems not attributable to diagnosable mental illness is not. LD is a complex diagnostic entity, grouped amongst the mental disorders in ICD- 10 (WHO, 1991) as Mental Retardation, a term that has long since disappeared from use in the United Kingdom but is retained elsewhere. For an individual to be designated as having LD, three core criteria need to be met. First, evidence of significant intellectual impairment (usually expressed in terms of an IQ score two or more standard deviations below the population mean, i.e. 70 and below); secondly, problems in overall adaptive functioning that are a consequence of this impairment; and, finally, an onset in childhood. However, even within these bounds, and despite diagnostic subdivisions into mild, moderate, severe and profound, people with LD constitute an extremely heterogeneous population encompassing a broad range of communicative, cognitive-perceptual, social, occupational, scholastic and self-actualising aptitudes and deficits. LD is formally classified with mental disorders and illnesses but it is nonetheless distinct from them and it is rare in contemporary practice for it to be thought of as a psychiatric disorder in and of itself. Despite this, mental illness, personality disorder and behavioural disorder requiring clinical intervention are overrepresented in this group (Bernal and Hollins, 1995), possibly reflecting issues such as physical health co-morbidity (especially epilepsy), structural cerebral abnormality and genetic predisposition (O Brien and Yule, 1995), and possibly an association with social deprivation and vulnerability (e.g. Flynn et al, 2002). It is often possible to diagnose co-morbid psychiatric conditions using conventional criteria in people with milder degrees of LD. However, as a very rough rule, presentations become increasingly atypical as the level of disability increases until the standard lexicon of diagnostic categories familiar to mental health workers working with the mainstream population becomes ever less applicable in those towards the more severe end of the spectrum (Bernal and Hollins, 1995). Schizophrenia, for example, is a diagnosis that can only reliably be made in those with mild LD who are able enough to communicate its key symptoms (Turner, 1989). As the severity of LD increases, clinicians become more inclined to consider clinical problems in diagnostic and descriptive ways, invoking the terms challenging behaviour or problem behaviour. Antipsychotics have been used for behavioural problems in people with LD in the absence of mental illness for almost as long as they have been used for the treatment of schizophrenia, and despite their off-label status and thin evidence base in terms of masked, randomised controlled trials (Brylewski and Duggan, 1999), they have held an established place ever since, with older drugs giving way to newer ones over time. There remain divisions, sometimes rather sharp ones, between specialist clinicians about the circumstances under which these drugs should be used when there is no formal mental illness. Similarly, there is debate about how they should be deployed alongside psychological and behavioural treatments when their use seems unavoidable or otherwise seems clinically compelling. 11
A recent, influential, double-masked RCT by Tyrer and colleagues (2008) involving 86 participants (a small number for mainstream treatment trials but unusually large in LD where recruitment to research is notoriously difficult for ethical as well as practical reasons), could find no difference between the efficacy of haloperidol, risperidone or placebo used for aggression of non-psychotic origin. These investigators again called into question the role of antipsychotics, at least in this particular, albeit common, scenario. Set against earlier work, again modest in its scope and applicability but providing some empirical support for this class of psychoactive agents (e.g. Aman et al, 2002, looking at risperidone in aggressive children with developmental delay; Ahmed et al, 2000, examining recurrence of behavioural problems when antipsychotics are withdrawn), the conclusion remains that antipsychotics, on balance, have a part to play in the management of what are at times complex and severe behavioural states, though the clear elucidation of that part remains elusive. However, as with other clinical conditions, where evidence fails it remains up to a precarious balance of custom and practice, pragmatics and, at times, a degree of ideology and personal bias based on individual experience to fill in the picture and decide what is for the best in the given situation. A major consideration, though, and one that sets antipsychotic prescribing practice in LD apart from arguably similarly ambiguous management problems in clinical psychiatry (such as the pharmacological treatment of borderline personality disorder), is the matter of the capacity of people with LD and behavioural problems to participate in decisions about their treatment. It is unusual for someone from this group of people to understand in more than basic terms what is proposed: its pros, cons, uncertainties and, above all, potential risks, and thus to have the capacity to make a proper informed choice. People with LD are amongst the most vulnerable in society, a vulnerability that extends as much at times into medical treatment as it does into social care and the burden on the clinician to judge what is in the best interest is high. In no small part this is what justifies LD psychiatry as a distinct speciality in the UK, although it remains one that has had little overall review of its patterns of practice and adherence to standards of best practice (insofar as these have been formulated and operationalised). Deb and colleagues (2006) have produced guidelines for the use of antipsychotics for behavioural indications in LD. Whilst the current evidence does not permit them to be prescriptive about treatment choice, the guidelines go some way to providing a framework for practice in terms of key domains such as assessment, capacity considerations, monitoring of effectiveness and adverse effects, communication and withdrawal. The present audit, however, was designed and conducted independently of the guideline document although there is important overlap. It has special focus on the monitoring of side-effects and the use of high-dose and multiple antipsychotics, areas for which there are well-established standards for practice and a large body of comparative data in adult mental health services in the United Kingdom (see POMH website: www.rcpsych.ac.uk/pomh). It is the first time that national practice in LD psychiatry has been reviewed and benchmarked in this way. In addition it has taken advantage of what is a unique opportunity to collect data on aspects of psychiatric diagnosis, types of behavioural problem being treated and patterns of co-morbidity. 12
Audit standards Whilst there is a lack of NICE guidance in this area, the literature has been reviewed and standards set in Using medication to manage behaviour problems among adults with a learning disability (Deb et al., University of Birmingham, September 2006). The audit standards used in this report were derived from these, and the third standard is also supported by the NICE clinical guideline for the management of schizophrenia CG82 (2009). Audit standards 1. The indication for treatment with antipsychotic medication should be documented in the clinical records. 2. The continuing need for antipsychotic medication should be reviewed at least once a year. 3. Side effects of antipsychotic medication should be reviewed at least once a year. This review should include assessment for the presence of EPS, and screening for the 4 aspects of the metabolic syndrome: obesity, hypertension, diabetes and dyslipidaemia. 13
Method The Prescribing Observatory for Mental Health (POMH-UK) invited all National Health Service (NHS) Trusts in the United Kingdom providing specialist mental health services to participate in a project to benchmark the use of antipsychotics in people with a learning disability. Each Trust that formally agreed to take part was asked to form a Local Project Team (LPT), with minimum core membership of a senior psychiatrist, a senior pharmacist, and a member of the clinical audit/clinical effectiveness team. It was suggested that nurses, other clinicians and service users be co-opted from relevant services to advise on this topic. Local Project Teams were invited to attend one of six regional introductory workshops to discuss and review the aims, objectives and methodology of the proposed audit. Comment and discussion at the workshops led to refinements of the audit methodology and data collection tool. All Trusts and clinical teams were self-selected in that they chose to participate. All participating Trusts/health care organisations are listed in alphabetical order in Appendix B. A case note audit of the use of antipsychotic medication in people with a learning disability was conducted. A questionnaire/audit tool was sent to Trusts with instruction that copies should be made available to allow clinical teams to audit either a sub-sample, or all the patients on an LD Consultant s current caseload who were currently prescribed an antipsychotic. The following data were collected: Age, gender, ethnicity, severity of learning disability, co-morbid psychiatric diagnoses and care setting Diagnosis of epilepsy The dose of each oral/short-acting IM and depot/long-acting antipsychotic currently prescribed The main indications for antipsychotic prescribing Other medications for mental health, behavioural problems or epilepsy Evidence of side effect monitoring The Local Project Team Lead for each participating Trust will be sent an Excel dataset containing their Trust s data. This allows Trusts to conduct further analyses on their own data should they wish. Data cleaning Data were collected using SNAP (electronic survey software), and stored and analysed using SPSS. Data were cleaned to correct instances of obvious data entry error. Details of corrections are held on file by POMH-UK; please contact pomhuk@cru.rcpsych.ac.uk if you wish to examine these. All figures presented are rounded to zero decimal places for simplicity. Therefore, the total percentages for some charts or graphs add up to 99% or 101%. 14
POMH-UK (2009) Topic 9a report The use of antipsychotics in people with a learning disability 15
1. National level results Thirty-nine specialist mental health Trusts (listed in Appendix B) within the UK participated in the baseline audit of this quality improvement programme to address the use of antipsychotic medication in people with a learning disability. Data were submitted for 2,319 patients from 145 clinical teams. The analyses presented in this section of the report were conducted on the total national sample (n=2,319) Audit standards 1. The indication for treatment with antipsychotic medication should be documented in the clinical records. 2. The continuing need for antipsychotic medication should be reviewed at least once a year. 3. Side effects of antipsychotic medication should be reviewed at least once a year. This review should include assessment for the presence of EPS, and screening for the four aspects of the metabolic syndrome: obesity, hypertension, diabetes and dyslipidaemia. 16
1.1: Patient demographic and clinical characteristics Table 1: Clinical and demographic characteristics of the total patient sample and LD severity subsamples Total sample Mild/ borderline Moderate Severe/ profound Key demographic characteristics n=2,319 n=1,101 n=672 n=546 Gender Male 1,384 60% 645 59% 411 61% 328 60% Ethnicity White/White British 1,955 84% 927 84% 572 85% 456 84% Black/ Black British 59 3% 26 2% 15 2% 18 3% Asian 84 4% 38 3% 18 3% 28 5% Mixed or other 221 10% 110 10% 67 10% 44 8% Age Mean age in years (SD) 44 (14.2) 43 (14.1) 45 (15.2) 44 (13.0) Age bands 16-25 years 282 12% 141 13% 93 14% 48 9% 26-35 years 399 17% 220 20% 90 13% 89 16% 36-45 years 586 25% 276 25% 168 25% 142 26% 46-55 years 560 24% 253 23% 148 22% 159 29% 56-65 years 345 15% 148 13% 114 17% 83 15% 66 years and over 147 6% 63 6% 59 9% 25 5% Antipsychotic prescribing Documented co-morbid psychiatric diagnoses Documented co-morbid psychiatric diagnoses: ICD-10 Initiated within 12 months 328 14% 176 16% 95 14% 57 10% Over 12 months 1,991 86% 925 84% 577 86% 489 90% None 273 12% 71 6% 85 13% 117 21% One 1,650 71% 826 75% 488 73% 336 62% Multiple 396 17% 204 19% 99 15% 93 17% Epilepsy 519 22% 171 16% 165 25% 183 34% F00-F09 69 3% 25 2% 29 4% 15 3% F10-F19 14 1% 13 1% 1 <1% 0 0% F20-F29 615 27% 438 40% 153 23% 24 4% F30-F39 628 27% 316 29% 192 29% 120 22% F40-F49 169 7% 92 8% 42 6% 35 6% F50-F59 20 1% 7 1% 6 1% 7 1% F60-F69 172 7% 111 10% 31 5% 30 5% F80-F89 481 21% 156 14% 137 20% 188 34% F90-F98 201 9% 62 6% 65 10% 74 14% F99 4 <1% 2 <1% 1 <1% 1 <1% Not known 110 5% 34 3% 38 6% 38 7% Approximately half of the total national sample (47%) had borderline/mild learning disability, 29% moderate and 24% severe/profound. No differences were seen between these subgroups with regard to the demographic variables collected: gender, age or ethnicity. Consistent with clinical expectations, the proportion of patients with a diagnosis of a schizophrenia spectrum disorder decreases with the severity of the learning disability, while the proportion with epilepsy or a disorder of psychological development (F80-89) increases. 17
1.2: Initiation of treatment with antipsychotic medication Table 2: Origin of antipsychotic treatment initiation where this occurred within the last year (n=328); across mild/borderline, moderate and severe/profound LD subsamples Antipsychotic treatment initiation Total n = 328 Mild/ borderline n = 176 Moderate n = 95 Severe/ profound n = 57 Independently initiated by primary care 12 (4%) 5 (3%) 3 (3%) 4 (7%) Initiated by primary care on recommendation from secondary care 64 (20%) 25 (14%) 22 (23%) 17 (30%) Independently initiated by secondary care 246 (75%) 143 (81%) 69 (73%) 34 (60%) Unclear 6 (2%) 3 (2%) 1 (1%) 2 (4%) In the subsample of patients who had been treated with an antipsychotic for less than a year (n=328), the prescription had been initiated by secondary care in the majority of cases. Primary care clinicians were more likely to be involved in initiating antipsychotic treatment for people with severe/profound learning disability than for those who were less impaired. This may partly reflect the setting in which the patient received treatment; those with mild learning disability may be more likely to attend psychiatric outpatient clinics whereas those with severe learning disability may be more likely to be visited in residential settings. 18
1.3: Indications for treatment with antipsychotic medication Audit standard 1: The indication for treatment with antipsychotic medication should be documented in the clinical records. Indications* for antipsychotic prescribing reported in at least 10% of patients, for whom it was initiated within the last 12 months (n=328): 1. Agitation and anxiety (n=142; 43%) 2. Co-morbid psychotic disorder (138; 42%) 3. Overt aggression (120; 37%) 4. Threatening behaviour (87; 27%) 5. Obsessive behaviour (37; 11%) *Note that individual patients may have been prescribed antipsychotic medication for more than one indication. In relation to audit standard 1, in 304 (93%) cases the rationale for initiating treatment with an antipsychotic was clearly documented in the clinical records. Indications* for antipsychotic prescribing reported in at least 10% of patients, for whom it was initiated more than 12 months ago (n=1,991): 1. Co-morbid psychotic disorder (833; 42%) 2. Agitation and anxiety (826; 42%) 3. Overt aggression (754; 38%) 4. Threatening behaviour (609; 31%) 5. Self harm (266; 13%) *Note that individual patients may have been prescribed antipsychotic medication for more than one indication. For 95% of patients who started antipsychotic treatment over 12 months ago, a clear reason for prescribing antipsychotic treatment was documented in the clinical records. 19
Table 3: Documented clinical indications for prescribing antipsychotic medication in patients whose treatment was initiated in the previous 12 months Agitation and anxiety Co-morbid psychotic disorder Overt aggression Threatening behaviour Obsessive behaviour Agitation and anxiety 43% Co-morbid psychotic disorder 9% 42% Overt aggression 17% 8% 37% Threatening behaviour 15% 7% 18% 27% Obsessive behaviour 8% 2% 6% 6% 11% The boxes with the white background show the total proportion of patients for whom each indication for use was documented, and the boxes with the blue background show the proportion for whom each combination of indications was documented. Bear in mind that these combinations are not mutually exclusive: if there were three indications in a particular case, this case would be counted in two blue cells. The findings in Table 3 reveal that in a relatively high proportion (two fifths) of cases, a documented indication for initiating treatment with an antipsychotic was the treatment of a diagnosed psychotic illness. A substantial proportion of patients, 44%, were prescribed antipsychotic(s) for a single indication, 27% were prescribed the drug(s) for 2 different indications, 14% for 3 indications, 7% for 4 indications, and 3% for 5 indications. Table 4: Documented clinical indications for prescribing antipsychotic medication in patients whose treatment was initiated more than 12 months ago Co-morbid psychotic disorder Agitation and anxiety Overt aggression Threatening behaviour Self-harm Co-morbid psychotic disorder 42% Agitation and anxiety Overt aggression Threatening behaviour 11% 42% 8% 19% 38% 8% 17% 20% 31% Self-harm 3% 9% 8% 5% 13% 20
The documented indications for initiating treatment with an antipsychotic in those patients who had been receiving such treatment for more than 1 year (Table 4) or less than 1 year (Table 3) were very similar. Also similar to the pattern seen in patients treated for under a year, the majority of patients being treated for over a year were prescribed antipsychotic(s) for a single indication (47%), 24% were prescribed the drug(s) for 2 different indications, 15% of patients for 3 indications, 7% for 4 indications, and 4% for between 5 and 10 indications (see Appendix C, Q15a-d for the full list of indications). Table 5: Perceived complexity of disorder, as indicated by LD severity, the number of antipsychotics prescribed and the number of indications per person, in the total national sample (TNS: n=2,319) Number of antipsychotics prescribed (% of total national sample) Mean number of indications per person Mild/borderline Moderate Severe/profound n=1,101 n=672 n=546 1 (85%) 1.6 1.8 2.1 2 (14%) 2.6 2.5 2.6 3 (0.5%) 2.2 1 2.5 The number of documented indications for antipsychotic treatment increases with the degree of learning disability, reflecting the known increase in the prevalence of behavioural problems with lower IQ. The number of indications were also greater in those who were prescribed combined antipsychotics than in those who were prescribed a single antipsychotic; this suggests that combined antipsychotics may be targeted towards those with more complex problems. 21
Figure 1: Proportion of people with co-morbid diagnoses, across mild/borderline, moderate and severe/profound diagnostic subsamples (n=2,319) The majority of patients overall had at least one comorbid diagnosis. That the proportion was lower in those with severe/profound LD may partly reflect the diagnostic difficulties. The five most frequent comorbid diagnoses in the total national sample are listed below in order of frequency: 1. Mood [affective] disorders (F30-39): n=628; 27% of TNS 2. Schizophrenia, schizotypal and delusional disorders (F20-29): 615; 27% 3. Disorders of psychological development (F80-89): 481; 21% 4. Behavioural and emotional disorders with onset usually occurring in childhood and adolescence (F90-98): 201; 9% 5. Disorders of adult personality and behaviour (F60-69): 172; 7% See Table 1, page 17 for a more detailed breakdown of comorbid diagnoses accross the LD severity subsamples. 22
1.4: Antipsychotic prescribing practice The prevalence of high-dose and combined antipsychotic prescribing identified in this audit is notably lower than in general adult psychiatry (Paton et al, 2008). Only 4% of the TNS were prescribed a high dose, and 15% prescribed a combination of antipsychotics. Antipsychotics prescribed for more than 50 patients in the total national sample, in descending order 1. Risperidone (n=925, 40%) 2. Olanzapine (n=471, 20%) 3. Chlorpromazine (n=241, 10%) 4. Haloperidol (n=238, 10%) 5. Quetiapine (n=226, 10%) Table 6: Dosing details for the most 5 most commonly prescribed antipsychotics 6. Zuclopenthixol (n=153, 7%) 7. Clozapine (n=79, 3%) 8. Aripiprazole (n=71, 3%) 9. Amisulpride (n=70, 3%) 10.Flupentixol (n=60, 3%) Use: n (%) Dose: Median (range) Drug Monotherapy Combination PRN Oral IM Oral PRN IM PRN Risperidone 791 (86%) 134 (14%) 86 (9%) 2mg (0.5-14mg) - 1mg (0.3-8mg) - Olanzapine 380 (81%) 91 (19%) 65(14%) 10mg (2.5-30mg) - 5mg (2.5-20mg) 10mg (2.5-20mg) Chlorpromazine 143 (59%) 98 (41%) 112 (47%) 100mg (7.5-1000mg) - 100mg (15-1150mg) 125mg (75-250mg) Haloperidol 117 (49%) 121 (51%) 110 (46%) 6mg (0.5-30mg) 10mg (6-15mg) 10mg (0.5-20mg) 15mg (0.5-30mg) Quetiapine 183 (81%) 43 (19%) 25 (11%) 250mg (25-800mg) - 100mg (25-750mg) - 23
Figure 2: Indication profiles for the most 5 most commonly prescribed antipsychotics* % of patients prescribed risperidone for given indications % of patients prescribed olanzapine for given indications % of patients prescribed chlorpromazine for given indications % of patients prescribed haloperidol for given indications % of patients prescribed quetiapine for given indications Only modest differences are seen between the indication profiles of risperidone, olanzapine, chlorpromazine, haloperidol and quetiapine. The majority of antipsychotic prescribing targets co-morbid psychotic disorder, anxiety and agitation, overt aggression or threatening behaviour. *Please note that indications are not mutually exclusive; i.e. one drug may be prescribed for more than one indication; and similarly, more than one drug may be prescribed to target a particular indication. 24
1.5: The use of other medicines to treat mental illness, behavioural problems or epilepsy The majority of patients in the total national sample (with a learning disability and prescribed an antipsychotic) were also prescribed one or more other regular medication(s) for mental illness, behavioural problems or epilepsy. The most common co-prescriptions were for antidepressants or anticonvulsants/mood stabilisers, suggesting that mood disorder is a common problem for which a pharmacotherapeutic remedy is sought. Table 7: Proportion of patients in the total national sample prescribed additional medication (n=2,319) Other drugs prescribed in addition to an antipsychotic Total sample n=2,319 Diagnosis of epilepsy n=519 Mild/ borderline n=1,101 Moderate n=672 Severe/ profound n=546 Antidepressant - SSRI 546 24% 80 15% 310 28% 147 22% 89 16% Valproate 472 20% 214 41% 194 18% 147 22% 131 24% Carbamazepine 389 17% 205 39% 119 11% 147 22% 123 23% Benzodiazepine 337 15% 112 22% 133 12% 101 15% 103 19% Anticholinergic 331 14% 75 14% 172 16% 81 12% 78 14% Antidepressant other 200 9% 33 6% 117 11% 46 7% 37 7% Lamotrigine 116 5% 98 19% 46 4% 39 6% 31 6% Lithium 107 5% 10 2% 53 5% 39 6% 15 3% Levetiracetam 53 2% 52 10% 20 2% 20 3% 13 2% Phenytoin 38 2% 38 7% 18 2% 14 2% 6 1% Pregabalin 24 1% 19 4% 11 1% 8 1% 5 1% Melatonin 23 1% 8 2% 6 1% 6 1% 11 2% Topiramate 17 1% 14 3% 4 <1% 7 1% 6 1% Methylphenidate 11 <1% 2 <1% 8 1% 1 <1% 2 <1% Gabapentin 10 <1% 9 2% 2 <1% 5 1% 3 1% Phenobarbital or Primidone 7 <1% 7 1% 3 <1% 3 <1% 1 <1% Omega 3 5 <1% 2 <1% 2 <1% 2 <1% 1 <1% Naltrexone 3 <1% 1 <1% 1 <1% 1 <1% 1 <1% Oxycarbazepine 3 <1% 2 <1% 2 <1% 1 <1% 0 0% Ethosuximide 2 <1% 2 <1% 0 0% 0 0% 2 <1% Other drug, not specified above 99 4% 36 7% 48 4% 29 4% 22 4% Prescribed any of the above drugs 1,697 73% 491 95% 789 72% 486 72% 420 77% Of those patients prescribed an antipsychotic with a diagnosis of epilepsy, almost all were also prescribed a drug for mental health, behavioural problems or epilepsy; however, these patients do not account for all anticonvulsant prescribing in the sample. With reference in particular to carbamazepine and valproate, patients with epilepsy account for about half of such prescriptions. 25
1.6: Reviewing medicines and side effects Audit standard 2: The continuing need for antipsychotic medication should be reviewed at least once a year. 1.6.1: Medicine review The clinical need for the continued treatment with an antipsychotic should be reviewed at least once a year. Within this review, the decision to either maintain the treatment or make a change to the drug/dose or frequency should be documented. Of those patients receiving antipsychotic treatment for over 12 months (n=1,991), 1,913 (96%) had a documented medication review in the last year; in 99% of these cases there was a record of the clinical decision as to whether the medication was to remain the same or change. For those with such a documented decision, the rationale for either keeping the medicine the same or changing was documented in 92% Figure 3: Documentation of decision at medication review conducted within the last 12 months. The proportion of patients for whom a clinical medication review had been documented in the previous year is very close to the standard, and higher than that seen in general adult psychiatry (POMH 2008a). 26
1.6.2: Side effect monitoring Audit standard 3: Side effects of antipsychotic medication should be reviewed at least once a year. This review should include assessment for the presence of EPS, and screening for the 4 aspects of the metabolic syndrome: obesity, hypertension, diabetes and dyslipidaemia. In relation to audit standard 3, this section gives details about the prevalence of documented side-effect monitoring in the subgroup of patients who had been prescribed antipsychotic treatment for over a year (n=1,991). Table 8: Nature of documented evidence in the clinical records of clinical assessment of side effects in the last year (n=1,991) n (%) General statement that side effects are present 424 (21%) General statement that side effects are not present 954 (48%) No statement about side effects 613 (31%) In just under three-quarters of patents, a general statement regarding the presence or absence of side effects had been documented in the last year. Antipsychotic drugs, particularly the first generation agents, are associated with extrapyramidal (motor) side effects. These side effects can be subjectively unpleasant (akathisia, dystonia), interfere with the ability to undertake routine daily tasks (tremor) and be stigmatising (tardive dyskinesia). They can also confound clinical assessment; akathisia for example may be mistaken for anxiety or agitation. Antipsychotic drugs can also cause weight gain and have been associated with impaired glucose control and dyslipidaemia. The NICE guideline for schizophrenia recommends that all patients who are prescribed antipsychotic drugs should be regularly assessed for side effects including those that increase cardiovascular risk. The prevalence and pattern of documented side effect assessment is shown in Tables 9 and 10 below. Table 9: Proportions of patients with documented evidence in their clinical records of EPS and weight gain assessment in the last year (n=1,991) Documented evidence in clinical records Evidence of Statement Statement formal side effect side effect assessment present not present No documented evidence of assessment EPS: n (%) 116 (6%) 158 (8%) 552 (28%) 1,165 (59%) Weight/BMI/waist circumference: n (%) 510 (26%) 237 (12%) 361 (18%) 883 (44%) 27
Table 10: Proportion of patients with documented evidence in their clinical records of monitoring blood pressure, blood glucose and lipid profile in the last year (n=1,991) Documented evidence in clinical records Reference to Test result monitoring, no test recorded result No documented evidence of monitoring Blood pressure: n (%) 424 (21%) 310 (16%) 1,257 (63%) Blood glucose: n (%) 729 (37%) 471 (24%) 791 (40%) Lipid profile: n (%) 696 (35%) 447 (23%) 848 (43%) Less than a quarter of patients had a documented measure of blood pressure, a quarter a measure of body weight/bmi and a third a documented test result for glucose and lipids. In a further small proportion of patients there is reference to assessment but no test results; these patients may have undergone measures/tests in primary care. The proportion of patients for whom potentially remediable cardiovascular risk factors were not assessed is high. See Table 11 below for a comparison of the proportion of patients with documented statements about side effects across the borderline/mild, moderate, and severe/profound LD subgroups of patients. Documented assessments of EPS, weight, blood pressure, blood glucose and lipid profiles showed similarly minor differences across these groups (data not shown). Table 11: Nature of documented evidence in the clinical records of clinical assessment of side effects in the last year (n=1,991) Borderline/mild Moderate Severe/profound General statement that side effects are present General statement that side effects are not present No statement about side effects 223 (24%) 120 (21%) 81 (17%) 442 (48%) 271 (47%) 241 (50%) 260 (28%) 186 (32%) 167 (34%) 28
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2. Trust level results Analyses presented in this section were conducted for each Trust individually and for the total sample to allow benchmarking. Data from each Trust are presented by code. Your Trust code is 40 Audit standards 1. The indication for treatment with antipsychotic medication should be documented in the clinical records. 2. The continuing need for antipsychotic medication should be reviewed at least once a year. 3. Side effects of antipsychotic medication should be reviewed at least once a year. This review should include assessment for the presence of EPS, and screening for the 4 aspects of the metabolic syndrome: obesity, hypertension, diabetes and dyslipidaemia. 30
2.1: Patient demographic and clinical characteristics Table 12: Number of clinical teams and patient records submitted by each participating Trust Trusts (by code) Number of participating clinics/teams from each Trust Total number of patient records submitted by each Trust 2 3 100 3 5 75 5 3 44 6 7 184 8 6 28 9 8 64 11 1 32 12 1 12 13 3 145 14 1 18 16 4 96 17 1 21 18 4 45 19 6 75 22 1 12 27 3 83 28 4 48 29 1 20 30 1 42 31 1 20 40 3 21 42 2 52 45 4 23 50 12 91 51 4 31 54 2 12 56 2 47 59 15 289 61 4 40 62 1 9 65 2 20 66 4 153 70 2 12 71 1 13 72 3 42 73 3 60 77 8 108 78 3 52 79 6 80 Total 145 2,319 31
Figure 4: Proportion of males and females for each Trust and the total national sample The Trust that submitted data for the highest proportion of males is on the left hand side of the Figure and the Trust with the lowest on the right. In this Figure, and all such subsequent figures, the proportions in the TNS are shown on the far right of the Figure. This Figure allows Trusts to compare the demographic characteristics of their sample of patients against the total national sample. Figure 5: Distribution of the three most common ethnic groups by Trust and in the total national sample The Trusts with the highest proportion of White British/Irish patients are on the left hand side of the Figure and the Trust with the lowest proportion on the right. This Figure allows Trusts to compare the demographic characteristics of their sample of patients against the total national sample. Trust teams may like to compare the ethnic breakdown of their patients with those of their catchment area population. 32
Figure 6: Patients learning disability severity by Trust and in the total national sample The Trusts with the highest proportion of patients with a borderline/mild learning disability are on the left hand side of the Figure and the Trust with the lowest proportion on the right. This Figure allows Trusts to compare the LD severity of their sample of patients against the total national sample. Figure 7: Patients co-morbid psychiatric diagnoses by Trust and in the total national sample The Trust with the highest proportion of patients with no comorbid diagnoses is on the left hand side of the Figure and the Trust with the lowest proportion on the right. This Figure allows Trusts to compare the comorbidity of their sample of patients against the total national sample. 33
This Figure relates to audit standard 1: The indication for treatment with antipsychotic medication should be documented in the clinical records. Figure 8: Proportion of patients in each Trust for whom the indication for antipsychotic prescribing is clearly documented The Trusts with the highest proportion of patients with clear documented indications are on the left hand side of the Figure and the Trust with the lowest proportion on the right. 34
This Figure relates to audit standard 2: The continuing need for antipsychotic medication should be reviewed at least once a year. Figure 9: Proportion of patients in each Trust for whom the continuing need for antipsychotic medication was reviewed in the last year The Trusts with the highest proportion of patients having had the need for antipsychotic medication reviewed in the last year are on the left hand side of the Figure and the Trust with the lowest proportion on the right. 35
The following six Figures all relate to audit standard 3: Side effects of antipsychotic medication should be reviewed at least once a year. This review should include assessment for the presence of EPS, and screening for the 4 aspects of the metabolic syndrome: obesity, hypertension, diabetes and dyslipidaemia. Figure 10: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of a general assessment of side effects in the last year. The Trusts with the highest proportion of patients with a documented general statement regarding side effects in the last year are on the left hand side of the Figure and the Trust with the lowest proportion on the right. 36
Figure 11: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of EPS in the last year. The Trust with the highest proportion of patients having had an assessment of EPS in the last year is on the left hand side of the Figure and the Trust with the lowest proportion on the right. 37
Figure 12: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of weight change in the last year. The Trust with the highest proportion of patients having had an assessment of weight/bmi in the last year is on the left hand side of the Figure and the Trust with the lowest proportion on the right. 38
Figure 13: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of blood pressure in the last year. The Trusts with the highest proportion of patients having had a review of blood pressure in the last year are on the left hand side of the Figure and the Trust with the lowest proportion on the right. 39
Figure 14: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of blood glucose in the last year. The Trusts with the highest proportion of patients having had a review of blood glucose in the last year are on the left hand side of the Figure and the Trust with the lowest proportion on the right. 40
Figure 15: Proportion of patients in each Trust and the total national sample with documented evidence in their clinical records of assessment of lipid profile in the last year. The Trusts with the highest proportion of patients having had a review of lipid profile in the last year are on the left hand side of the Figure and the Trust with the lowest proportion on the right. 41
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3. Clinical team level results Analyses presented in this section were conducted for each clinical team from your Trust individually, for your total Trust sample and for the total national sample to allow benchmarking. Data from each Trust clinical team are presented by code only. The POMH-UK Central Project Team does not know the identity of individual teams. Only the Local Project Team lead for your Trust or organisation has the key to team codes. You should contact this person if you need to identify data for your own particular team. 44
Figure 16: Proportion of patients receiving antipsychotic treatment for under a year (n=12) in each team for whom the indication for antipsychotic prescribing is clearly documented The team with the highest proportion of patients with clear documentation of the indication is on the left hand side of the Figure and the team with the lowest proportion on the right. In this Figure, and all such subsequent Figures, the proportions in the Trust and TNS are shown on the far right of the Figure. Figure 17: Proportion of patients receiving antipsychotic treatment for over a year (n=9) in each team for whom the continuing need for antipsychotic medication was reviewed in the last year The team with the highest proportion of patients having a medicines review in the last year is on the left hand side of the Figure and the team with the lowest proportion on the right. 45
Figure 18: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of a general assessment of side effects in the last year. The team with the highest proportion of patients having a general assessment of side effects in the last year is on the left hand side of the Figure and the team with the lowest proportion on the right Figure 19: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of EPS in the last year. The team with the highest proportion of patients having an assessment of EPS in the last year is on the left hand side of the Figure and the team with the lowest proportion on the right. 46
Figure 20: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of weight change in the last year. The team with the highest proportion of patients having an assessment of weight change in the last year is on the left hand side of the Figure and the team with the lowest proportion on the right. Figure 21: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of blood pressure in the last year. The team with the highest proportion of patients having an assessment of blood pressure in the last year is on the left hand side of the Figure and the team with the lowest proportion on the right. 47
Figure 22: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of blood glucose in the last year. The team with the highest proportion of patients having an assessment of blood glucose in the last year is on the left hand side of the Figure and the team with the lowest proportion on the right. Figure 23: Proportion of patients in each team and the total national sample with documented evidence in their clinical records of assessment of lipid profile in the last year. The team with the highest proportion of patients having an assessment of lipid profile in the last year is on the left hand side of the Figure and the team with the lowest proportion on the right. 48
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Appendix A: Data Ownership As outlined in the original memorandum of understanding, the following statement outlines the agreement between POMH-UK and Trusts regarding ownership of data. Data collected by a Local Project Team will belong to that Trust. These Trust data will be made available to POMH-UK in a way that is anonymous with the exception of the identity of the source Trust. The national data will be analysed by POMH-UK and a report summarising the audit results will be returned to each Trust. In this report all data will be anonymous except that of the receiving Trust. However, it will allow for benchmarking with comparable Trusts. There is a publication strategy allowing POMH-UK to publish the anonymous aggregated data on its web site and in appropriate scientific journals. Any requests from other organisations for audit data will be referred to the POMH-UK reports in the public domain or provided with a list of member Trusts and asked to approach individual Trusts directly. 50
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Appendix B: Participating Trusts The Trusts that participated in this audit are listed below in alphabetical order. 5 Boroughs Partnership Trust Avon & Wiltshire Mental Health Partnership NHS Trust Barnet, Enfield & Haringey Mental Health Trust Bedfordshire & Luton Partnership NHS Trust Belfast Health and Social Care Trust Berkshire Healthcare NHS Foundation Trust Cambridgeshire and Peterborough NHS Foundation Trust Central and North West London NHS Foundation Trust Cornwall Partnership NHS Trust Coventry and Warwickshire Partnership Trust Derbyshire Mental Health Services NHS Trust East London NHS Foundation Trust Greater Manchester West Mental Health NHS Foundation Trust Hertfordshire Partnership NHS Foundation Trust Hywel Dda NHS Trust Mental Health and Learning Disabilities Division Kent and Medway NHS and Social Care Partnership Trust Leeds Partnership Foundation Trust Leicestershire Partnership Trust Lincolnshire Partnership NHS Foundation Trust Mersey Care NHS Trust Milton Keynes PCT North Essex Partnership NHS Foundation Trust North Staffordshire Combined Healthcare NHS Trust Northumberland, Tyne and Wear NHS Trust Nottinghamshire Healthcare NHS Trust Oxleas NHS Foundation Trust Rotherham, Doncaster and South Humber Mental Health NHS Foundation Trust Sheffield Health & Social Care NHS Foundation Trust Somerset Partnership NHS Foundation Trust South Essex Partnership NHS Foundation Trust South London and Maudsley NHS Foundation Trust South Staffordshire and Shropshire Healthcare NHS Foundation Trust South West London and St George's Mental Health Trust South West Yorkshire Mental Health Trust Southern Health and Social Care Trust Suffolk Mental Health Partnership NHS Trust Tees Esk and Wear Valleys NHS Foundation Trust The State Hospital Wolverhampton City PCT 52
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Appendix C: Audit data collection guide and form 54
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