The NISAD Schizophrenia Research Register: why do we need a database of schizophrenia volunteers?

2001 ◽  
Vol 35 (5) ◽  
pp. 660-667 ◽  
Author(s):  
Carmel M. Loughland ◽  
Vaughan J. Carr ◽  
Terry J. Lewin

Objective: This paper documents the establishment of the Schizophrenia Research Register of the Neuroscience Institute of Schizophrenia and Allied Disorders (NISAD). This register aims to provide a volunteer pool of people with a clinical diagnosis of schizophrenia who are willing to consider participating in research projects. This unique resource is accessible to the general scientific research community. Method: The Register, which operates as a standalone, computerized relational database, maintains demographic and clinical information about individuals with schizophrenia recruited through media campaigns, and general health and non-government support agencies. Preliminary data are reported on the first 400 people with schizophrenia who registered on the database, together with selected comparisons with data from the national Low Prevalence (psychotic) Disorders Study (LPDS). Results: Individuals currently on the Register have a mean age of 38.74 years (SD = 11.41) and are predominantly Australian born (85.1%), which is consistent with data from the LPDS. However, the gender distribution is more balanced compared with the LPDS (53.8% vs 65.4% males) and proportionately more registrants are married or in de facto relationships (18.4% vs 10.8%). Registrants also tend to have lower current symptomatology and higher functioning relative to participants in the LPDS. Conclusions: The Register provides a unique and invaluable educational and research resource, as well as a complementary recruitment source for researchers who would otherwise rely on samples drawn primarily from mental health services.

2003 ◽  
Vol 37 (1) ◽  
pp. 31-40 ◽  
Author(s):  
Vaughan J. Carr ◽  
Amanda L. Neil ◽  
Sean A. Halpin ◽  
Scott Holmes ◽  
Terry J. Lewin

Objective: To estimate the costs associated with the treatment and care of persons with psychosis in Australia based on data from the Low Prevalence Disorders Study (LPDS), and to identify areas where there is potential for more efficient use of existing health care resources. Method: The LPDS was a one-month census-based survey of people with psychotic disorders in contact with mental health services, which was conducted in four metropolitan regions in 1997–1998. Mental health and service utilization data from 980 interviews were used to estimate the economic costs associated with psychotic disorders. A prevalencebased, ‘bottom-up’ approach was adopted to calculate the government and societal costs associated with psychosis, including treatment and non-treatment related costs. Results: Annual societal costs for the average patient with psychosis are of the order of $46 200, comprising $27 500 in lost productivity, $13 800 in inpatient mental health care costs and $4900 in other mental health and community services costs. Psychosis costs the Australian government at least $1.45 billion per annum, while societal costs are at least $2.25 billion per annum (including $1.44 billion for schizophrenia). We also report relationships between societal costs and demographic factors, diagnosis, disability and participation in employment. Conclusions: Current expenditure on psychosis in Australia is probably inefficient. There may be substantial opportunity costs in not delivering effective treatments in sufficient volume to people with psychotic disorders, not intervening early, and not improving access to rehabilitation and supported accommodation.


2000 ◽  
Vol 34 (2) ◽  
pp. 221-236 ◽  
Author(s):  
Assen Jablensky ◽  
John McGrath ◽  
Helen Herrman ◽  
David Castle ◽  
Oye Gureje ◽  
...  

Objective: This paper reports on a study designed within the framework of the National Survey of Mental Health and Wellbeing to: estimate the prevalence of psychoses in urban areas of Australia; identify profiles of symptomatology, impairments and disabilities; collect information on services received and needed; and explore quality of life issues in a broadly representative sample of people with psychotic illnesses. Method: The study was conducted over four areas in the Australian Capital Territory, Queensland, Victoria and Western Australia, as a two-phase survey: (i) a census and screening for psychosis of all individuals who made contacts with mental health services during a period of 1 month in 1997; and (ii) interviews with a stratified random sample (n = 980) of the screen-positive individuals (n = 3800) using a standardised instrument. Results: The point prevalence (1 month) of psychotic disorders in the urban population aged 18–64 is in the range of 4–7 per 1000 with a weighted mean of 4.7 per 1000. People with psychotic disorders experience high rates of functional impairments and disability, decreased quality of life, persistent symptoms, substance-use comorbidity and frequent side effects of medication. Although the utilisation of hospital-based and community mental health services, as well as of public and non-governmental helping agencies, is high, the majority live in extreme social isolation and adverse socioeconomic circumstances. Among the many unmet needs, the limited availability of community-based rehabilitation, supported accommodation and employment opportunities is particularly prominent. Conclusions: The so-called ‘low-prevalence’ psychotic disorders represent a major and complex public health problem, associated with heavy personal and social costs. There is a need for a broad programmatic approach, involving various sectors of the community, to tackle the multiple dimensions of clinical disorder, personal functioning and socioeconomic environment that influence the course and outcome of psychosis and ultimately determine the effectiveness of service-based intervention.


2021 ◽  
Vol 9 ◽  
Author(s):  
Naomi Takizawa ◽  
Ingrid Melle ◽  
Elizabeth Ann Barrett ◽  
Mari Nerhus ◽  
Akiah A. Ottesen

Background: Duration of untreated psychosis (DUP) is associated with outcome in psychotic disorders and influenced by contextual factors such as immigration. Here we aimed to investigate the effect of mental health literacy (MHL) on duration of untreated psychosis considering the influence of migration and education.Methods: A total of 269 participants who received their first adequate medical treatment for a psychotic disorder within the current or past year were included to the Thematically Organized Psychosis study in Oslo, Norway. Sociodemographic and clinical information was collected through systematic interviews. MHL was measured as “recognition of psychotic symptoms” and assessed by “The Attitudes and Beliefs about Mental Health Problems” schizophrenia version. Influence of education, migration and MHL on DUP was analyzed with hierarchical block-wise multiple regression analysis.Results: Recognition of psychotic symptoms explained a small but unique variance (2.3%) in DUP after the effects of other important predictors were controlled for. Longer DUP was also associated with less education, lower premorbid social, and academic functioning, a diagnosis within schizophrenia spectrum disorder, and earlier age of onset. The model explained 26% of variance in DUP. Migration after the age of six and length of education were associated with MHL but did not have a significant interaction with MHL in predicting DUP.Conclusions: MHL, measured as recognition of psychotic symptoms, has a small but significant independent effect on DUP. The effect of MHL was larger than years of education and migration history, and did not interact with either, in predicting DUP. This suggests that MHL is an independent factor in prevention strategies for early psychosis.


2000 ◽  
Vol 34 (5) ◽  
pp. 792-800 ◽  
Author(s):  
Stephen Rosenman ◽  
Ailsa Korten ◽  
Jo Medway ◽  
Mandy Evans

Objective: This study examines the factorial structure of symptoms and signs in psychosis in data from the Study on Low Prevalence (psychotic) Disorders which is part of the National Survey of Mental Health and Wellbeing, Australia 1997–1998. Method: The present study examined a wide variety of symptoms taken from the Schedules for Clinical Assessment in Neuropsychiatry items and the substance use items in the Diagnostic Interview for Psychosis, an instrument specially constructed for the national study. The instrument was applied to 980 community and hospital subjects with a wide range of psychotic illness diagnoses. The data were factor analysed and scales of ‘domains of psychopathology’ derived. Results: The data were best fitted by five principal factors (‘domains’) which can be approximately labelled dysphoria, positive symptoms, substance use, mania and negative symptoms/incoherence. These factors together explained 55.4% of variance in symptoms. Solutions with more numerous factors did not improve the representation. Conclusion: The five domains successfully characterise a large part of the variance in psychopathology found in the present study of low prevalence (psychotic) disorders. The approach allows sufferer's symptom range and severity to be well expressed without multiple comorbid diagnoses or the limits imposed by categorical diagnosis. Knowledge of alternative dimensional representations of psychopathology may usefully complement our use of categories, enhance awareness of symptoms and ensure that important psychopathology is heeded in practice and research.


2020 ◽  
pp. 103985622097527
Author(s):  
Bridson Tahnee ◽  
Abeysundera Hesitha ◽  
Arunachalam Arulmathy ◽  
Lam Anthea ◽  
Mora Linda ◽  
...  

Objective: Clozapine is the most effective antipsychotic available for treatment-resistant schizophrenia. Unfortunately, it is often underutilised or administered late in the treatment course, if at all. This issue is further augmented in rural and remote regions where access to treatment is sparse. This study is the first of its kind to investigate the use of clozapine in a remote and regional area of Australia with a high proportion of Aboriginal and/or Torres Strait Islander individuals. Methods: This study includes all individuals who were commenced on clozapine between June 2013 and June 2018. Relevant clinical information was sourced from electronic medical records and descriptive statistical analysis performed. Results: A total of 3850 patients with psychotic disorders were reviewed over 5 years, of whom 63 were commenced on clozapine. The majority were male ( n = 50, 79.4%) with a mean age of 33.9 years (standard deviation 11.0). A total of 34.9% ( n = 22) identified as Aboriginal and/or Torres Strait Islander. The mean length of time between diagnosis and commencement of clozapine was 7.2 years (standard deviation ±4.6 years), while the mean number of antipsychotic medications tried prior to clozapine was 4.2 (standard deviation ±1.6 antipsychotics). Clozapine was discontinued in 57.1% of the individuals in this study (41% within the first 12 months). The most common cause for cessation was poor compliance ( n = 19, 30.2%). Conclusion: While clozapine remains the most effective antipsychotic treatment, it is often commenced late in the treatment or ceased prematurely. Further work is required, particularly in remote and regional populations, to ensure treatment adherence for optimal patient outcomes.


2017 ◽  
Vol 11 (2) ◽  
pp. 74-82
Author(s):  
Heather Welsh ◽  
Gary Morrison

Purpose The purpose of this paper is to investigate the use of the Mental Health (Care and Treatment) (Scotland) Act 2003 for people with learning disabilities in Scotland, in the context of the recent commitment by the Scottish Government to review the place of learning disability (LD) within the Act. Design/methodology/approach All current compulsory treatment orders (CTO) including LD as a type of mental disorder were identified and reviewed. Data was collected on duration and type of detention (hospital or community based) for all orders. For those with additional mental illness and/or personality disorder, diagnoses were recorded. For those with LD only, symptoms, severity of LD and treatment were recorded. Findings In total, 11 per cent of CTOs included LD as a type of mental disorder. The majority of these also included mental illness. The duration of detention for people with LD only was almost double that for those without LD. A variety of mental illness diagnoses were represented, psychotic disorders being the most common (54 per cent). Treatment was broad and multidisciplinary. In all, 87 per cent of people with LD only were prescribed psychotropic medication authorised by CTO. Originality/value There has been limited research on the use of mental health legislation for people with learning disabilities. This project aids understanding of current practice and will be of interest to readers both in Scotland and further afield. It will inform the review of LD as a type of mental disorder under Scottish mental health law, including consideration of the need for specific legislation.


2003 ◽  
Vol 11 (2) ◽  
pp. 220-224 ◽  
Author(s):  
Monica Gilbert ◽  
Kathryn Miller ◽  
Lesley Berk ◽  
Velma Ho ◽  
David Castle

Objectives: The psychosocial needs of people with psychotic disorders are not being addressed adequately. The present paper outlines a proposed framework that will help to meet some of this deficit and deliver psychosocial treatments for these individuals, as part of routine clinical practice. Conclusions: The recent Australian study on low prevalence (psychotic) disorders found that, although most Australians (91%) with a psychotic illness were taking medication, few were receiving adequate psychosocial support from mental health services; fully 47% of these saw the need for a particular type of service that was not able to be accessed by them, either because of it simply not being available or not being affordable. The programme described herein will develop, evaluate and disseminate comprehensive modular treatment packages addressing the psychosocial needs of people with psychotic disorders. It is novel in terms of the comprehensiveness of the approach, the rigour of the evaluation (using a controlled experimental design), and the extent of intersectoral and multidisciplinary involvement in mapping needs, developing the interventions, and dissemination. The potential impact for mental health consumers with psychosis is enormous because currently there is no coherent and consistent approach to addressing their psychosocial needs. The impact for the scientific community will be great because there is currently very little by way of controlled trial data in this important area of activity.


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