Medication use among Australian adults with intellectual disability in primary healthcare settings: A cross-sectional study

Abstract

Background There is concern about widespread medication use by people with intellectual disability (ID), especially psychotropic and anticonvulsant agents. However, there is sparse information on prescribing patterns in Australia.

Method This cross-sectional study was conducted between 2000 and 2002 among adults with ID who live in the community in Brisbane, Australia. Medication data were extracted from a health screening tool. Demographic and medical data were collected from telephone interviews and medical records.

Results Of 117 participants, 35% were prescribed psychotropic medications, most commonly antipsychotics, and 26% anticonvulsants. Complementary medications (vitamins, minerals, amino acids, fish oil, and herbal products) were used by 29% of participants. After adjusting for potentially confounding variables, psychotropic medication use was significantly associated with having a psychiatric illness (adjusted odds ratio = 4.6, 95% CI [1.0, 20.6]) and challenging behaviours (4.4, [1.1, 17.3]).

Conclusions People with ID use a broad range of medications. Psychotropic medications continue to be the most predominant agents prescribed for this population. Psychotropic medication use is positively associated with having a psychiatric illness and challenging behaviours.     

Psychotropic drug use among people with intellectual disability before and after deinstitutionalization

Background The use of psychotropic medication among people with intellectual disability (ID) is widespread, and they are one of the most medicated groups in society. A substantial number of individuals with ID receive psychotropic medications that may be inappropriate for their diagnosis. One of the main reasons for the use of psychotropic medication is challenging behaviours. Almost all prevalence studies show higher prevalence rates of psychotropic medication in institutions compared with community living. Studies on deinstitutionalization and the use of psychotropic medication are few and inconclusive. Method The present study is a prospective cohort study without control group. It examines the use of psychotropic medication among 109 subjects aged between 16 and 65 years before (1987) and after (1995) deinstitutionalization. Psychotropic drug dosages were transformed to percentage of defined daily dosage. Results We found no major changes in the use of neuroleptics after deinstitutionalization neither in frequency nor in dosages, and the trend seemed indiscriminate in relation to diagnosis. The people with schizophrenia or an anxiety disorder did not receive proper drug treatment, nor did they before deinstitutionalization. Conclusions The main predictor variable for neuroleptic dosage both before and after deinstitutionalization was challenging behaviour. The reason for this may be the difficulties in determining the extent to which presenting behaviours are the result of a psychiatric disorder or a behaviour disorder, the lack of knowledge among the caretakers and the ensuing referral practice, the lack of knowledge among the general practitioners, and the lack of access to specialized health services.     

Psychiatric diagnoses in relation to severity of intellectual disability and challenging behaviors: a register study among older people

ABSTRACT

Objective: To investigate the possible association between severity of intellectual disability (ID) and presence of challenging behavior, respectively, on diagnoses of psychiatric disorders among older people with ID.

Methods: People with a diagnosis of ID in inpatient or specialist outpatient care in 2002–2012 were identified (n = 2147; 611 with mild ID, 285 with moderate ID, 255 with severe or profound ID, and 996 with other/unspecified ID). Moreover, using impairment of behavior as a proxy for challenging behavior, 627 people with, and 1514 without such behavior were identified.

Results: Severe/profound ID was associated with lower odds of diagnoses of psychotic, affective, and anxiety disorders than was mild/moderate ID. People with moderate ID had higher odds than those with mild ID of having diagnoses of affective disorders. Diagnoses of psychotic, affective, and anxiety disorders, and dementia were more common among people with challenging behavior than among those without.

Conclusions: People with severe/profound ID had lower odds of receiving psychiatric diagnoses than those with mild and moderate ID. Whether this is a result of differences in prevalence of disorders or diagnostic difficulties is unknown. Further, challenging behaviors were associated with diagnoses of psychiatric disorders. However, the nature of this association remains unclear.     

Treatment and management of challenging behaviours in congregate and noncongregate community-based supported accommodation

Objectives To compare the nature and prevalence of use of procedures employed to treat and manage challenging behaviours across two approaches to providing community-based supported accommodation for people with intellectual disabilities (ID) and severe challenging behaviour: noncongregate settings where the minority of residents have challenging behaviour, and congregate settings where the majority of residents have challenging behaviour. Setting Community-based supported accommodation for people with ID and challenging behaviour. Design Longitudinal matched groups design. Main outcome measures The nature and prevalence of use of procedures employed to treat and manage challenging behaviours. Observed and reported severity of challenging behaviours. Results Both types of settings were associated with low prevalence of use of behavioural technologies for the reduction of challenging behaviour (less than 15% of participants). In contrast, high proportions of participant received antipsychotic medication in both noncongregate (56%) and congregate (80%) settings. Congregate settings were associated with the increased use of physical restraint as a reactive management strategy, with over half of participants being in receipt of physical restraint by two or more members of staff. Discussion Changes in reported and observed challenging behaviour over a 10-month period were slight. The use of evidence-based behavioural technologies for the reduction of challenging behaviour may have led to better outcomes.     

Proxy and self-reported Quality of Life in adults with intellectual disabilities: Impact of psychiatric symptoms,problem behaviour,psychotropic medication and unmet needs

Proxies often underestimate the subjective Quality of Life (QoL) of adults with intellectual disability (ID). However, little is known about the reasons for these differences. Accordingly, the purpose of the present study is to, firstly, compare the self-reported QoL of adults with ID with proxy reports from staff of sheltered working and housing facilities, and, secondly, to identify possible differences of the impact of four potential predictor variables. Data of 102 adults with ID were collected as part of the MEMENTA study (‘Mental health care provision for adults with ID and a mental disorder’). Results show that self-report QoL scores ranged from 72.6 to 86.8. Both proxies consistently reported lower QoL scores and agreement between self and proxy ratings was predominantly poor. Unmet needs and psychotropic medication were identified as the most important predictors of reduced self-rated QoL, whereas an increase of psychiatric symptoms, problem behaviours, and psychotropic medication best predicted the reduced QoL proxy ratings. To conclude, proxies still have to strive for a more holistic approach in surrogate QoL assessments and according to adults with ID, service providers should focus on a reduction of unmet needs and psychotropic medication to further improve QoL.     

Refining diagnoses: applying the DC-LD to an Irish population with intellectual disability

Background The diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation (DC-LD) is a diagnostic tool developed in 2001 to improve upon existing classification systems for adults with learning disability. The aim of this study was to apply the classification system described by the DC-LD to a residential intellectual disability (ID) population to examine whether it improved our diagnostic understanding of residents. Methods Chart reviews of 113 of 178 people in a residential ID service were conducted. For each resident, information was recorded according to the DC-LD multi-axial system. Each resident's case was then discussed with a member of nursing staff familiar with the resident. If diagnosis was unclear, the case was discussed with a senior clinical psychiatrist. Results The percentage of residents with a moderate to profound ID was 87.6%. In total, 94 diagnoses of psychiatric illness (Axis III, Level B, DC-LD) were made. Of those 94 diagnoses, seven new diagnoses were found because of DC-LD criteria. Of the total number of psychiatric diagnoses made, 72.3% were non-specific, residual category diagnoses. A total of 79 residents (69.9%) had at least one behaviour problem diagnosed on Axis III, Level D, Problem behaviours. Fifty-six (49.6%) of residents in this sample had co-morbid epilepsy. Conclusions In people with moderate to profound learning disabilities, diagnosis continues to be challenging. The DC-LD is a useful tool in helping to clarify diagnoses in this population by providing revised criteria and a system to classify problem behaviours. The DC-LD would be more helpful if specific axes were included to document medical and psychosocial problems independently from other diagnoses. Further research is warranted to determine whether the DC-LD hierarchical approach to diagnosis improves diagnostic validity.     

Psychiatric morbidity with focus on obsessive–compulsive disorder in an Israeli cohort of adolescents with mild to moderate mental retardation

The study evaluated the prevalence of DSM-IV-TR-defined psychiatric disorders in adolescents with mental retardation, with a focus on obsessive-compulsive disorder (OCD), for which data at present are sparse. Eighty-seven adolescents with mild to moderate mental retardation attending the Israeli special-education system were screened for psychiatric disorders in general and obsessive-compulsive symptoms in particular. Sixty-one percent had at least one psychiatric disorder. Of the 13 participants receiving antipsychotic medication, none had an underlying psychotic disorder and most had anxiety or depressive disorders. OCD was detected in 11% of participants and was characterized by high rates of psychiatric comorbidities. The severity of autistic symptoms predicted 39% of the variance in the severity of OCD symptoms. Adolescents with mild to moderate mental retardation have high rates of psychiatric morbidities that are often inappropriately treated. OCD is prevalent in this population and is strongly associated with autistic symptoms. Further studies are required in adolescents with mental retardation to better delineate psychiatric morbidities and their appropriate treatment in this at-risk population.     

Randomized trial of psychotropic medication information leaflets for people with intellectual disability

People with intellectual disability (ID), like other patient groups, are known to have a limited knowledge of medication. Leaflets are seen as an appropriate means of providing patient information. To test the hypothesis that medication information leaflets would improve the knowledge and care of the target group, the present authors designed a randomized trial and planned to do subgroup analyses where appropriate. The participants were individually randomized to two groups. A control group was given verbal medication information by their nurse or psychiatrist, and a study group was given specifically designed leaflets in addition to verbal information. The present authors recruited 54 people with mild to moderate ID and mental illness, aged 18 years and older, who were taking psychiatric medications. Questionnaires administered by a blind interviewer recorded outcomes such as medication knowledge and satisfaction at two time points. The participants with mild ID in the leaflet group had significantly reduced medication knowledge and understanding. There were no significant differences in satisfaction with clinicians and medication. Patient information leaflets may confuse people with mild ID in the short term. Other patient groups with cognitive deficits may have similar outcomes. Evaluation of outcomes of health education initiatives is important.     

Psychotropic drug use in older people with mental illness with particular reference to antipsychotics: a systematic study of tolerability and use in different diagnostic groups

OBJECTIVE: The objective of the study was to provide observational clinical data on psychotropic drugs used in older people with mental illness. METHODS: This was an observational, single-centre, one-week prevalence study of psychiatric symptoms, disorders and psychotropic drug use in older with mental illness cared for by the South West people Yorkshire Mental Health NHS Trust (Wakefield Locality), UK. The clinical assessment included completion of the Psychosis Evaluation Tool for Common use by Caregivers. RESULTS: A total of 593/660 older patients with mental illness (mean +/- SD age, 76 +/- 8.1 years were assessed. 44.5% had dementia (excluding vascular dementia) and 33.7% had a mood disorder. Of the total, 20.4% did not receive CNS active medication. Of those receiving CNS active medication approximately half (51.3%) took antipsychotics and 46.2% antidepressants. Of 304 patients taking antipsychotics, 87% took only one medication. However, patients with schizophrenia and related disorders were significantly more likely to be prescribed two or more antipsychotics (p < 0.001). Risperidone was the most frequently prescribed antipsychotic (n = 136, 44.7%). Risperidone doses were significantly lower for patients with dementia and mood disorders than with schizophrenia (p < 0.002). Side-effects from antipsychotics were significantly greater in patients with schizophrenia, suggesting a dose-related effect. Risperidone appeared to be well tolerated in all patients with no evidence of cerebrovascular side-effects in patients taking it. CONCLUSIONS: Psychotropic drugs were commonly used by older people in contact with mental health services. The doses of antipsychotics used in dementia and affective disorders were significantly lower than in schizophrenia. Risperidone was the most commonly used drug in all diagnostic groups including dementia. Despite a relatively large numbers of patients receiving risperidone in this naturalistic study, no serious side-effects were reported or identified. In this paper we focus our findings on antipsychotics in the light of recent advice from the Committee on Safety of Medicines (UK).     

A Review of Empirical Evidence of Somatic Treatment Options for the MI/DD Population

This article reviews recent evidence in the literature for the use of psychotropic and other somatic treatments in the management of patients with mental retardation (MR). The search methodology included peer-reviewed English language publications in PubMed and PsychINFO with the words Mental Retardation, Intellectual Disability, Developmental Disability and Mental Disorders/Drug Therapy or Antipsychotic medications, Psychiatric Somatic therapies, Neuroleptic Drugs, Antidepressants and Electroconvulsive Therapy from 1998 to 2008. The review revealed few randomized controlled trials on the medications frequently prescribed for patients with MR. Three RCTs of Risperidone in children, one combining adults and children and one with adults only are discussed. There was one RCT involving Quetiapine and one on Citalopram. There is little evidence to support the scope of psychotropic medication use in the MR population though the field is advancing. The contribution of psychiatric illness to challenging behaviors is not systematically addressed in the literature.     

Prevalence of Psychiatric Diagnoses and Challenging Behaviors in a Community-Based Population of Adults With Intellectual Disability

Previous research has suggested substantial variation in prevalence rates of psychiatric disorders in individuals with intellectual disability (ID) and also differential patterns of associations between psychiatric disorders and challenging behaviors in people with ID. The aim of this study was to determine the prevalence rate of specific psychiatric disorders and challenging behaviors and the relationship between them in a community-based sample of individuals with ID. A community-based sample of 159 adults primarily with mild and moderate ID was surveyed for the presence of psychiatric disorders and challenging behaviors using the Behavior Problem Inventory and the Psychiatric Assessment Schedule (PAS-ADD). Individuals who met threshold on the PAS-ADD were subsequently evaluated using the Mini PAS-ADD Interview. Screening for psychiatric disorders using the PAS-ADD indicated a prevalence rate of 10%. There was a large discrepancy between the overall rate of challenging behaviors (45%) and the rate of psychiatric disorders identified by the Mini PAS-ADD Interview (6%). However, the rate of more severe behavior problems (8%) was closer to the rate of psychiatric disorders (6%). Thirty-one percent of people with severe challenging behaviors also were rated as having psychiatric disorders and odd ratio analysis indicates that individuals with severe challenging behaviors are substantially more likely to present with a psychiatric disorder. However, the relationship between different topographies of challenging behaviors and discrete diagnostic categories of psychiatric disorders appears to be unclear. This study reports a low prevalence of psychiatric disorders in a community-based population. The presence of severe challenging behaviors appears to have some association with psychiatric disorders but does not appear specific to discrete diagnostic categories. Clinicians and researchers need to debate the validity of considering challenging behaviors atypical manifestations of psychiatric disorders.     

The overweight: obesity and plasma lipids in adults with intellectual disability and mental illness

Background Previous studies in adults with intellectual disabilities (ID) have reported a higher prevalence of obesity than in the general population, and a trend to an increase in the prevalence of excess weight. However, little information is available on body weight status and lipids levels of adults with ID and co‐existing mental illness. The aim of this study was to address this information gap, by conducting a stepwise multiple regression analysis to predict BMI, thereby allowing the investigation of (semi‐)partial correlations, which assess the extent to which a particular predictor variable is associated with BMI over and above the other predictors. Methods A study of the patients with ID and psychiatric illness registered in the service. Collected data included body mass index (BMI), age, gender, the presence of additional physical conditions, residential status, mental illness and use the psychotropic medication. We analysed the lipid profile including serum cholesterol together with low‐density lipoprotein, high‐density lipoprotein (HDL), triglycerides and the serum cholesterol/HDL ratio. Data for these variables were entered into a stepwise multiple linear regression to predict BMI. Results 28% of the participants were overweight and 41% obese. Most of the obese patients were men with mild ID (P = 0.039). Level of ID (P = 0.003), gender (P = 0.001) and serum triglycerides (P = 0.026) had significant predictive value in the regression model. There were no significant differences in either the mean serum cholesterol levels or the mean triglyceride levels between those taking and those not taking first‐generation antipsychotics, second‐generation antipsychotics or anti‐epileptic medication. Conclusions The rate of obesity in our sample was higher than in previous studies. The most predictive combination of predictors to predict BMI was ID level, gender and serum triglyceride levels. Serum triglyceride and cholesterol levels did not appear to be unduly affected by first‐ or second‐generation antipsychotic medication or by antiepileptic medication.     

Behaviour Management Problems as Predictors of Psychotropic Medication and Use of Psychiatric Services in Adults with Autism

We examined behaviour management problems as predictors of psychotropic medication, use of psychiatric consultation and in-patient admission in a group of 66 adults with pervasive developmental disorder (PDD) and intellectual disability (ID) and 99 controls matched in age, gender and level of ID. Overall, people with PDD had higher rates of most DAS behaviour problems and more frequent use of anti-psychotics than matched controls. Logistic regression analyses showed that physical aggression and problems such as pestering staff independently predicted use of anti-psychotics. Physical aggression and overactivity predicted further involvement of psychiatric services. PDD diagnosis predicted admission to an in-patient unit. The results suggest that externalizing problem behaviours in adults with autism can predict type of treatment intervention.     

The course and outcome of psychiatric illness in people with Prader–Willi syndrome: implications for management and treatment

Background This study is part of a larger UK‐wide study investigating psychiatric illness in people with Prader–Willi syndrome (PWS), and describes the longitudinal aspect of psychiatric illness, in particular psychotic illness, and examines the use and role of psychotropic medication. Method A total of 119 individuals with genetically confirmed PWS were included in the study. An informant‐based questionnaire was administered for each participant to screen for a history of psychopathology. Those who screened positive were visited at their homes to obtain further information. This assessment included a full psychiatric history and mental state examination using the Psychiatric Assessment Schedule for Adults with Developmental Disability and the Operational Criteria Checklist for psychotic and affective illness to collect information regarding phenomenology and course of illness, and a modified life events questionnaire. At the end of the study period, informant‐based telephone interviews were again carried out, up to 2.5 years after the initial screening. Information regarding medication usage was collected. Results The results confirm previous findings that psychiatric illness in people with PWS resembles an affective disorder. Individuals with the maternal uniparental disomy genetic subtype had a more severe course of illness than those with the deletion genetic subtype in terms of a greater risk of recurrence, more episodes, higher incidence and a possibly poorer response to medication with more side‐effects. Individuals with a recurrent episode during the follow‐up period had a poorer course of illness. Selective serotonin reuptake inhibitor medication is frequently used, and beneficial effects may reflect fundamental pathological processes in PWS. Mood‐stabilizing medication was found to be of little benefit and reasons for this are examined. Conclusion The longitudinal course of psychiatric illness and response to medication in people with PWS is fully described. Further research is needed regarding the effect of psychotropic medications, particularly mood‐stabilizing medication. These data will enable informed decisions to be made regarding management options and provide information on the possible long‐term outcome of illness.     

Psychopathology in Adults with Autism and Intellectual Disability

There have been few studies of psychopathology in adult with autism. This study examined psychiatric co-morbidity in 147 adults with intellectual disability (ID) and autism and 605 adults with ID but without autism. After controlling for the effects of gender, age, psychotropic medication and level of ID, people with autism and ID were no more likely to receive a psychiatric diagnosis than people with ID only. People with autism were less likely to receive a diagnosis of personality disorder. These findings cast doubts on the hypothesis that adults with ID and autism are more vulnerable to certain psychiatric disorders than non-autistic adults with ID.     

Concomitant psychotropic medication for youths

OBJECTIVE: This study reviewed the clinical research and practice literature relating to the prevalence and patterns of concomitant psychotropic medication given to youths with emotional and behavioral disorders. METHOD: A MEDLINE search from 1996 through spring 2002, including a review of references from relevant published articles and reports, was undertaken to identify available information on concomitant psychotropic medication for youths. RESULTS: The data supporting concomitant psychotropic medication for youths are almost exclusively based on case reports and small-scale, nonblind assessments. In the mid-1990s, over 20% of outpatient youths treated in community mental health centers and over 40% of youths treated in inpatient psychiatric facilities were given concomitant psychotropic medication. The rate has since increased. Psychiatrists more than primary care physicians prescribe concomitant psychotropic medication, and they show great variability in their prescribing habits. Youths with aggressive behavior, male gender, severe emotional illness, and disabling social maladjustment are most likely to receive concomitant psychotropic medication. CONCLUSIONS: Substantive systematic evidence is needed to clarify this increasingly common, inadequately researched child psychopharmacologic practice.     

Prevalence and risk markers of behavior problems among adults with intellectual disabilities: A total population study in Örebro County,Sweden

The aim of the present study was to investigate the prevalence of behavior problems among people with administratively defined intellectual disability (ID) and identify possible risk markers for behavior problems using the Behavior Problems Inventory (BPI). Sixty-two percent of the ID population (n = 915) had a behavior problem (self-injurious, stereotyped, or aggressive/destructive behavior) and 18.7% had a behavior problem identified as challenging behavior, resulting in a prevalence of 80.3 per 100,000 in the base population. The most pronounced risk markers for behavior problems were severity of ID, autism, night sleep disturbances, sensory hypersensitivity, communication dysfunction, social deficits, psychiatry involvement, and psychotropic medication. About 50% of people with behavior problems were on psychotropic drugs. Protective markers were Down's syndrome and, to some extent, cerebral palsy. The results were largely consistent with those reported in previous studies. Findings not previously reported were that prevalence of aggressive/destructive behavior peaked among those ≥70 years. Highlighting groups within a population at particular risk has implications for management and treatment of individuals with behavior problems.     

Comparison of Self- and Proxy Report of Mental Health Symptoms in People With Intellectual Disabilities

Mental illness, and its assessment and treatment, is a concern for caregivers and professionals working with people with intellectual disability (ID), as well as a cause of distress and disability for people with ID. Research in this area is hindered by difficulties associated with recognizing symptoms of mental illness and tracking their changes. The use of empirically derived and tested tools can improve clinical and research outcomes. This study compares proxy reports of mental health symptoms using the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (PAS-ADD) Checklist to self-reported symptoms using an interview form of the Brief Symptom Inventory (BSI). While the two scales were statistically correlated, clinically they presented very differently. The PAS-ADD identified 23.6% of participants as scoring in the at-risk category of mental health symptoms, while self-rating of symptoms on the BSI resulted in 67.8% of participants scoring above the cutoff. Concerns regarding the use of the BSI for a wide range of people with ID are discussed, as well as the concerns of using proxy report for subjective topics such as mental health symptoms.