Strategies for Accessible Breast Screening for People With Intellectual Disability.

INTRODUCTION: People with intellectual disability are less likely to participate in breast screening than people without intellectual disability. They experience a range of barriers to accessing breast screening, however, there is no consensus on strategies to overcome these barriers. Our objective was to reach consensus on the strategies required for accessible breast screening for people with intellectual disability. METHODS: Fourteen experts participated in a modified on-line Delphi that used Levesque's model of health care access as the theoretical framework. At the end of each round descriptive and thematic analyses were completed. Data was then triangulated to determine if consensus was reached. RESULTS: After 3 rounds, 9 strategies were modified, 24 strategies were added and consensus was reached for 52 strategies across the 5 dimensions of access. Key areas of action related to (i) decision making and consent, (ii) accessible information, (iii) engagement of peer mentors, (iv) service navigators, and (v) equipping key stakeholders. CONCLUSIONS: The resulting strategies are the first to articulate how to make breast screening accessible and can be used to inform health policy and quality improvement practices.

Risk factors for dementia and self-harm: A linkage study.

INTRODUCTION: People living with dementia experience poor mental health and high rates of self-harm. We investigated risk factors for self-harm in people aged > 40 years living with dementia and risk factors for dementia after self-harm. METHODS: Using linked hospital data from New South Wales, Australia, we defined a dementia cohort (n = 154,811) and a self-harm cohort (n = 28,972). Using survival analyses, we investigated predictors of self-harm for the dementia cohort, and predictors of dementia for the self-harm cohort. RESULTS: We found self-harm or dementia diagnoses occurred most often within 24 months of a dementia diagnosis or initial self-harm presentation, respectively. Men living with dementia, and people with complex psychiatric profiles, had the greatest risk of self-harm. Men who had self-harmed had the greatest risk of dementia diagnoses. DISCUSSION: Men and people with complex psychiatric profiles and dementia may particularly benefit from post-diagnosis mental and behavioral support to reduce risk of self-harm.

Hospital service utilisation of people previously hospitalised with different subtypes of psychotic disorder: A record linkage study.

OBJECTIVE: Little research has examined the physical and mental comorbidities, and health service use patterns, of people diagnosed with psychotic disorder subtypes other than schizophrenia spectrum disorders. This study aims to examine the physical and mental comorbidities, and subsequent hospital service use patterns, of individuals previously hospitalised with various psychotic disorder subtypes using linked health service data. METHODS: We included individuals hospitalised with a psychotic disorder in New South Wales, Australia, between 1 July 2002 and 31 December 2014 (N = 63,110). We examined the demographic profile of the cohort and rates of subsequent acute hospital care and ambulatory mental health service use. We compared the rates of subsequent hospital admissions, emergency department presentations and ambulatory mental health treatment days of people hospitalised with different psychotic disorder subtypes to people hospitalised with schizophrenia spectrum disorders using Poisson regression. RESULTS: People most recently hospitalised with mood/affective disorders and psychotic symptoms had a higher rate of subsequent hospital admissions than those most recently hospitalised with schizophrenia spectrum and delusional disorders (adjusted incident rate ratio = 1.06; 95% confidence interval = [1.02, 1.10]), while people most recently hospitalised with drug-induced and other organic (adjusted incident rate ratio = 1.19; 95% confidence interval = [1.12, 1.27]) and acute psychotic disorders (adjusted incident rate ratio = 1.10; 95% confidence interval = [1.03, 1.18]) had more subsequent emergency department presentations than those most recently hospitalised with schizophrenia spectrum and delusional disorders. All three groups had fewer subsequent mental health ambulatory days than those most recently hospitalised with schizophrenia spectrum and delusional disorders (adjusted incident rate ratios = 0.85-0.91). CONCLUSION: The health profiles and subsequent hospital service use patterns of people previously hospitalised with different psychotic disorder subtypes are heterogeneous, and research is needed to develop targeted health policies to meet their specific health needs.

The Association Between Problematic Use of Alcohol and Drugs and Repeat Self-Harm and Suicidal Ideation.

Aims: We investigated the association between problematic use of alcohol and/or drugs (PUAD) and the incidence, urgency, and mode of discharge for a subsequent episode of self-harm (SH) or suicidal ideation (SI). Methods: This was a retrospective population-based cohort study of individuals admitted to hospital for an index episode of SH/SI (2010-2014) using linked data from hospital admissions and emergency department (ED) presentations. The outcome variables were (1) subsequent presentation to the ED for SH/SI, (2) triage category, and (3) mode of departure. Key predictors were PUAD. Results: In total, 23,007 individuals were admitted to hospital for an index SH/SI, of whom 8% had a subsequent presentation to an ED for SH/SI within a year. The odds of subsequent presentation was increased in those with problematic alcohol use (AOR 1.62, 95% CI 1.36, 1.92), drug use (AOR 1.28, 95% CI 1.07, 1.53), and mental health diagnoses (AOR 1.63, 95% CI 1.44, 1.85). Those with problematic alcohol use were more likely to be assigned to the most urgent triage categories (AOR 1.84, 95% CI 1.32, 2.56). Limitations: Defining SH and PUAD using administrative data is challenging, and the true prevalence is likely to be underestimated. Conclusion: The findings underscore the importance of drug health intervention as a key component of self-harm prevention.

Factors associated with discharge from hospital to residential aged care for younger people with neuropsychiatric disorders: an exploratory case-control study in New South Wales, Australia.

OBJECTIVES: To examine the sociodemographic and diagnostic factors associated with a discharge from hospital to residential aged care (RAC) for younger people (aged 15-64 years) with neuropsychiatric disorders. DESIGN: An exploratory case-control study using a historic cohort of people with neuropsychiatric disorders. Cases were people transferred to RAC on hospital discharge during the study period. Controls were people not transferred to RAC on discharge during the study period. SETTING: Public and private hospital admissions in New South Wales (NSW), Australia. PARTICIPANTS: People aged 15-64 years with a neuropsychiatric disorder hospitalised in NSW between July 2002 and June 2015 (n=5 16 469). OUTCOME MEASURES: The main outcome was transferred to RAC on discharge from hospital. We calculated ORs for sociodemographic and diagnostic factors to determine factors that may impact discharge to RAC. RESULTS: During the period of data capture, 4406 people were discharged from hospitals to RAC. Discharge to RAC was most strongly associated with diagnoses of progressive neurological and cognitive disorders. Acute precipitants of RAC transfer included a broad range of conditions and injuries (eg, Wernicke's encephalopathy, stroke, falls) in the context of issues such as older age, not being partnered (married or de facto), living in areas of lower socioeconomic status, functional issues and the need for palliative care. CONCLUSIONS: There are multiple intersecting and interacting pathways culminating in discharge from hospital to RAC among younger people with neuropsychiatric disorders. Improved capacity for interdisciplinary home care and alternative housing and support options for people with high support needs are required.

Readmission and emergency department presentation after hospitalisation for epilepsy in people with intellectual disability: A data linkage study.

BACKGROUND: Despite the high prevalence of epilepsy and multiple barriers to care in people with intellectual disability, the risk of returning to hospital after an admission for epilepsy is largely unknown. In this study, we sought to quantify and compare readmission and emergency department (ED) presentations after hospitalisation for epilepsy in people with and without intellectual disability. METHODS AND FINDINGS: Using linked administrative datasets, we conducted a retrospective cohort study of people aged 5-64 years with an acute hospitalisation for epilepsy from 2005-2014 in New South Wales, Australia. Acute readmission and ED presentation rates within 30, 90, and 365 days of the index hospitalisation were estimated and compared between people with and without intellectual disability using modified Poisson regression. Of 13537 individuals with an index hospitalisation, 712 children and 1862 adults had intellectual disability. Readmission and ED presentation after the index hospitalisation were common in people with intellectual disability. Within 30 days, 11% of children and 15.6% of adults had an all-cause readmission and 18% of children and 23.5% of adults had an ED presentation. Over 60% of both children and adults presented to an ED within a year. Neurological, respiratory, and infectious conditions were overrepresented reasons for readmission in people with intellectual disability. Age-adjusted relative risks (RRs) within each period showed a higher risk of readmission and ED presentation in children and adults with intellectual disability than without. Most RRs remained statistically significant after controlling for covariates. The largest adjusted RRs were observed for readmission for epilepsy (RR 1.70, 95% CI: 1.42 to 2.04) and non-epilepsy related conditions (RR 1.73, 95%: CI 1.43 to 2.10) in children. Study limitations include lack of clinical data. CONCLUSIONS: Increased risk of returning to acute care after epilepsy hospitalisation suggests there is a need to improve epilepsy care for people with intellectual disability. We recommend research into strategies to improve management of both seizures and comorbidity.

Mortality rate, risk factors, and causes of death in people with epilepsy and intellectual disability.

PURPOSE: The extent to which co-occurring intellectual disability influences mortality in people with epilepsy is largely unknown. This study compares mortality rates in people with epilepsy with and without intellectual disability and investigates causes of death and risk factors for mortality. METHOD: This retrospective cohort study used linked population-based administrative datasets to derive a cohort of people with epilepsy admitted to hospital from 2005-2015 in New South Wales, Australia. We calculated mortality rates for those with and without intellectual disability and compared them by estimating relative mortality risks with modified Poisson regression. Leading causes of death were summarised. We investigated risk factors for death in people with intellectual disability by fitting Poisson regression. RESULTS: Of 28500 people hospitalised with an epilepsy diagnosis, 6029 had intellectual disability, 863 (14.3%) of whom died during follow-up. Sex and age-adjusted relative mortality risks showed that people with intellectual disability had higher mortality than those without, with the highest risk in females and peaking at age 5 (males: 1.88, 95%CI 1.28-2.48; females: 2.73, 95%CI 1.84-3.62), then decreasing with age. Neurological, respiratory, and endocrine, nutritional, and metabolic disorders were overrepresented causes of death in people with intellectual disability. The risk factors for death were older age, disability service use and several specific comorbidities. CONCLUSION: Children and young adults with epilepsy and intellectual disability are at greater risk of dying than those with epilepsy alone. Our data highlight the potential to reduce the excess risk by improved management of epilepsy and comorbid conditions.

The health service contact patterns of people with psychotic and non-psychotic forms of severe mental illness in New South Wales, Australia: A record-linkage study.

OBJECTIVE: To describe and compare the health profiles and health service use of people hospitalised with severe mental illness, with and without psychotic symptoms. METHODS: We conducted a historical cohort study using linked administrative datasets, including data on public hospital admissions, emergency department presentations and ambulatory mental health service contacts in New South Wales, Australia. The study cohort comprised 169,306 individuals aged 12 years and over who were hospitalised at least once with a mental health diagnosis between 1 July 2002 and 31 December 2014. Of these, 63,110 had a recorded psychotic illness and 106,196 did not. Outcome measures were rates of hospital, emergency department and mental health ambulatory service utilisation, analysed using Poisson regression. RESULTS: People with psychotic illnesses had higher rates of hospital admission (adjusted incidence rate ratio (IRR) 1.26; 95% confidence interval [1.23, 1.30]), emergency department presentation (adjusted IRR 1.17; 95% confidence interval [1.13, 1.20]) and ambulatory mental health treatment days (adjusted IRR 2.90; 95% confidence interval [2.82, 2.98]) than people without psychotic illnesses. The higher rate of hospitalisation among people with psychotic illnesses was driven by mental health admissions; while people with psychosis had over twice the rate of mental health admissions, people with other severe mental illnesses without psychosis (e.g. mood/affective, anxiety and personality disorders) had higher rates of physical health admissions, including for circulatory, musculoskeletal, genitourinary and respiratory disorders. Factors that predicted greater health service utilisation included psychosis, intellectual disability, greater medical comorbidity and previous hospitalisation. CONCLUSION: Findings from this study support the need for (a) the development of processes to support the physical health of people with severe mental illness, including those without psychosis; (b) a focus in mental health policy and service provision on people with complex support needs, and (c) improved implementation and testing of integrated models of care to improve health outcomes for all people experiencing severe mental illness.

Public mental health service use by people with intellectual disability in New South Wales and its costs.

OBJECTIVES: To describe the population characteristics of people with intellectual disability in New South Wales; to quantify and compare public mental health service use and costs for people with and without intellectual disability in NSW during 2014-15. DESIGN: Retrospective cohort data linkage analysis. SETTING, PARTICIPANTS: People using publicly funded in- or outpatient (admitted or non-admitted) mental health services in NSW, 2014-15. MAIN OUTCOME MEASURES: Numbers of bed days (inpatient mental health services), and treatment days (ambulatory mental health); costs of publicly funded mental health services. RESULTS: People with intellectual disability comprised 1.1% of the NSW population, but 6.3% of people who used public mental health services; 12% of public mental health costs during 2014-15 were for people with intellectual disability. Compared with metropolitan local health districts (LHDs), overall public mental health service costs were lower for rural and regional LHDs (adjusted incidence rate ratio [aIRR], 0.8; 95% CI, 0.8-0.9) and higher for specialty networks (aIRR, 1.2; 95% CI, 1.1-1.3). Per person costs for people with intellectual disability were higher than for those without intellectual disability (aIRR, 2.6; 95% CI, 2.2-3.0). CONCLUSION: People with intellectual disability use public mental health services to a greater degree than other people. They should be explicitly considered by all tiers of mental health policy and service planning in Australia. Population health planning for the needs of people with disabilities would be assisted by including disability identifiers in all health administrative data sets.

Expert consensus on the operation of an adult tertiary intellectual disability mental health service in New South Wales, Australia.

OBJECTIVE: To identify and reach consensus on the priorities and operation of an adult tertiary intellectual disability mental health service in New South Wales, Australia. METHOD: An online Delphi consultation was conducted with 25 intellectual disability mental health experts. RESULTS: Participants agreed that the service should involve a multidisciplinary team and accept people with an intellectual disability aged over 15 years with complex needs and/or atypical presentations. Agreed service roles included short-term assessment, diagnosis and treatment, providing high-level clinical advice, and capacity building. Endorsed principles and practical ways of working align with existing guidelines. CONCLUSIONS: This study describes experts' views on how an adult tertiary intellectual disability mental health service should operate in New South Wales. Further consultation is needed to determine the views of people with an intellectual disability and mental health staff.

Has teaching about intellectual disability healthcare in Australian medical schools improved? A 20-year comparison of curricula audits.

BACKGROUND: People with intellectual disability (ID) have multiple and complex health needs, more frequent healthcare episodes, and experience poorer health outcomes. Research conducted two decades ago showed that medical professionals were lacking in the knowledge and skills required to address the complex needs of this patient group. The aim of the current study was to determine whether Australian undergraduate medical schools that offer ID health education content had changed the amount and nature of such teaching over this period. METHODS: Identical or equivalent questionnaire items were compared across eight Australian medical schools that participated in curricula audits conducted in 1995 (referred to as T1) and 2013/14 (T2). The audits were of the nature of the ID content, methods used to teach it, and who taught it. RESULTS: There was no significant difference in the number of hours of compulsory ID content offered to medical students at T2 (total = 158.3 h; median = 2.8 h per ID unit) compared with T1 (total = 171 h; median = 2.5 h). At T2 compared with T1, units with ID content taught in the area of general practice had increased (2 units; 3.6% to 7 units; 16.3%), while decreases were seen in paediatrics (22 units; 40.0% to 10 units; 23.3%) and psychiatry (10 units; 18.2% to 4 units; 9.3%). The number of schools using problem- and/or enquiry-based learning rose to six at T2 from one at T1. Inclusive teaching practices (people with ID develop or deliver content) in compulsory/elective units had increased at T2 (10 units; 23.3%) compared with T1 (6 units; 10.9%), but direct clinical contact with people with ID had decreased (29 units; 52.7% to 11 units; 25.6%). CONCLUSIONS: Overall, little progress has been made to address the gaps in ID education for medical students identified from an audit conducted in 1995. Renewal of ID content in medical curricula is indicated as a key element in efforts to improve workforce capacity in this area and reduce barriers to care, with the aim of reversing the poor health outcomes currently seen for this group.

Subspecialty training pathways in intellectual and developmental disability psychiatry in Australia and New Zealand: current status and future opportunities.

OBJECTIVES: This study aimed to examine the training experiences of and determine capacity to train future Australian and New Zealand psychiatrists working in intellectual and developmental disability mental health. METHODS: Australian and New Zealand psychiatrists with expertise or interest in intellectual and developmental disability mental health completed an online survey detailing their training pathway, support for subspecialty training and capacity to provide rotations in this area. RESULTS: Psychiatrists (n=71) indicated the most common reasons they started practicing in intellectual and developmental disability mental health, and these included seeing people with intellectual or developmental disability in a service in which they worked, or personal experience with intellectual or developmental disability. Compared to those trained overseas, psychiatrists trained in Australia or New Zealand had lower ratings of the sufficiency of education received in intellectual and developmental disability mental health. Of the total respondents, 80% supported the development of subspecialty training. Augmentation of intellectual and developmental disability mental health content in the intermediate stage of training was also strongly supported. Participants identified 80 potential six-month training rotations in this area. CONCLUSIONS: Psychiatrists working in intellectual and developmental disability mental health strongly support enhancements to intellectual or developmental disability training, including the development of subspecialty training, and can identify potential training capacity if such subspecialty training was developed.

Clinical capacity of Australian and New Zealand psychiatrists who work with people with intellectual and developmental disabilities.

OBJECTIVE: To describe the characteristics and clinical capacity of Australian and New Zealand psychiatrists working in intellectual and developmental disability mental health (IDDMH). METHOD: Consultant psychiatrists (n=71) with an interest or expertise in IDDMH completed an online survey about their roles, experience and time spent in intellectual developmental disability (IDD)-related activities. RESULTS: Psychiatrists had worked in IDDMH for a median of 11.34 years and half (53.5%) reported expertise in the area. One-fifth of psychiatrists reported IDDMH as their main area of practice. The majority of respondents (85.1%) reported that they were working clinically with people with IDD. Respondents practicing clinically worked a median of 8 hours in clinical and 3 hours in non-clinical IDD-related work per week. CONCLUSIONS: Surveyed psychiatrists had considerable experience in IDDMH. However, their work in IDDMH represented a relatively small proportion of their overall work hours, and a minority of respondents were responsible for a large proportion of clinical work. Exploring ways to broaden capacity is crucial to ensuring the mental health needs of people with IDD are met.

Reduced caudate volume and cognitive slowing in men at risk of fragile X-associated tremor ataxia syndrome.

Fragile X-associated tremor ataxia syndrome is an inherited neurodegenerative disorder caused by premutation expansions (55-200 CGG repeats) of the FMR1 gene. There is accumulating evidence to suggest that early cognitive and brain imaging signs may be observed in some premutation carriers without motor signs of FXTAS, but few studies have examined the relationships between subcortical brain volumes and cognitive performance in this group. This study examined the relationships between caudate volume and select cognitive measures (executive function and information processing speed) in men at risk of developing FXTAS and controls with normal FMR1 alleles (<45 CGG repeats). The results showed that men with premutation alleles performed worse on measures of executive function and information processing speed, and had significantly reduced caudate volume, compared to controls. Smaller caudate volume in the premutation group was associated with slower processing speed. These findings provide preliminary evidence that early reductions in caudate volume may be associated with cognitive slowing in men with the premutation who do not present with cardinal motor signs of FXTAS. If confirmed in future studies with larger PM cohorts, these findings will have important implications for the identification of sensitive measures with potential utility for tracking cognitive decline.

Neuropsychiatric profile and psychotropic medication use in adults with autism spectrum disorder: results from the Australian Longitudinal Study of Adults with Autism.

BACKGROUND: Children and adolescents with autism spectrum disorder (ASD) are a highly medicated group. Few studies have examined the neuropsychiatric profile and patterns of psychotropic medication use among adults with ASD. AIMS: To describe and compare the neuropsychiatric profile and psychotropic medication use in a cohort of adults with ASD and non-autistic controls. METHOD: Baseline data from a survey-based, longitudinal study of adults with ASD in Australia. Participants were 188 adults with ASD and 115 controls aged 25-80 years. RESULTS: ASD was associated with increased odds of psychotropic medication use even when controlling for the presence of any neurological or psychiatric disorder. There were no corresponding indications for 14.4% of psychotropic medications prescribed to adults with ASD. CONCLUSIONS: This study found substantial psychotropic prescribing for adults with ASD. Patterns of psychotropic medication use may reflect prescribing for behavioural indications despite limited evidence to support this practice. DECLARATION OF INTEREST: None.

Transition to adult mental health services for young people with an intellectual disability.

People with intellectual disabilities (ID) experience high rates of mental health problems, particularly during the period of transition to adulthood. It is therefore important that the transition from child- to adult-oriented health services for people with ID is well managed to ensure appropriate orientation to ongoing adult mental health care. The purpose of this paper is to summarise the impact and experience of transition to adult mental health care for people with ID and those who support them, as well as issues related to current policy and practice in this area. Several opportunities for improvement are identified in the broad areas of policy, service structure and organisation, research and workforce capacity. Enhancements in these areas will lead to improved outcomes for young people with ID transitioning from child- to adult-oriented mental health care.

Intellectual disability content within tertiary medical curriculum: how is it taught and by whom?

BACKGROUND: Individuals with intellectual disability experience higher rates of physical and mental health conditions compared with the general population, yet have inequitable access to health care services. Improving the workplace capacity of medical professionals to meet the needs of this population is one way to reduce barriers to care and improve health outcomes. Using diverse pedagogy appropriate to learning outcomes to teach medical students about intellectual disability is a necessary step in improving future workplace capacity. However, there is a lack of research into how, and by whom, medical students are taught about intellectual disability. The aim of this study was to investigate this through an audit of Australian medical school curricula. METHODS: The Deans of Australian universities that provide accredited medical degrees (n = 20) were invited by email to participate in a two-phase audit of intellectual disability content in the curricula. Phase 1 (n = 14 schools) involved the Dean's delegate completing a telephone interview or questionnaire regarding medical course structure. If intellectual disability content was identified, a unit coordinator was invited to complete a survey regarding how this content was taught and by whom (Phase 2; n = 12 schools). RESULTS: There was considerable variability across Australian medical schools regarding methods used to teach content about intellectual disability. Didactic teaching methods were most frequently used (62% of units included some form of lecture), but workshops and tutorials were reasonably well represented (34% of units contained one or both). Thirty-six percent of units included two or more teaching methods. Almost all schools (83%) used some problem- and/or enquiry-based learning. Educator backgrounds included medicine, nursing, and allied health. A majority of schools (n = 9, 75%) involved people with intellectual disability designing and teaching content, but the extent to which this occurred was inconsistent. CONCLUSIONS: Renewing curricula around intellectual disability across all medical schools by introducing varied teaching methods and the inclusion of people with intellectual disability would assist students to develop knowledge, skills, attitudes, and confidence in intellectual disability health. Such renewal offers the potential to reduce barriers to service this population regularly face, thereby improving their health outcomes.

Building workforce capacity in Australia and New Zealand: a profile of psychiatrists with an interest in intellectual and developmental disability mental health.

OBJECTIVE:: To describe the characteristics of psychiatrists working in the area of intellectual and developmental disability mental health (IDDMH) across Australia and New Zealand. METHODS:: A secondary analysis of data collected by the Royal Australian and New Zealand College of Psychiatrists 2014 workforce survey. Characteristics of the IDDMH workforce ( n=146 psychiatrists) were compared with those of the broader psychiatry workforce ( n=1050 psychiatrists). RESULTS:: The IDDMH workforce were more likely than the broader psychiatry workforce to be working across both the public and private health sectors, be engaged in outreach work, endorse specialty practice areas pertinent to IDDMH, treat younger patients and work more clinical hours per week. Part-time status and retirement plans of the IDDMH workforce matched those of the broader psychiatry workforce. CONCLUSIONS:: While some elements of the IDDMH workforce profile suggest this workforce is tailored to the needs of the population, the potential shortage of IDDMH psychiatrists highlights the need for the development of a specific training programme and pathway in this area.