International Research Programme on Psychoses In Diverse Settings (INTREPID II)

What is the programme about?

Psychotic disorders are frequently distressing conditions in which people experience symptoms such as hallucinations (seeing or hearing things that are not there) and false thoughts or beliefs (delusions). These disorders usually begin at a young age (in the 20s) and often (but not always) lead to long term distress and suffering.

Around 20 million people world wide experience a psychotic disorder. However, what we know about these disorders is based on research done mainly in Europe, North America, and Australia. We do not know much about these disorders in other places, especially in developing countries. This is a problem because it means we do not know how best to treat those with a psychotic disorder in developing countries.

This programme, then, is about finding out more about psychotic disorders in other places. What we want to know is: are psychotic disorders the same? That is, are they as frequent, are the symptoms the same, is the outcome the same, and are the effects and needs the same in developing countries?

What will we do?

We will carry out research on psychotic disorders in areas (sites) in three countries: India, Nigeria, and Trinidad. We have chosen these places because they are very different from each other.

Using the same methods, in each site, we will identify 240 individuals with a psychotic disorder that has not been previously treated and 240 individuals without a psychotic disorder. We will collect information from them at the point we identify them and 2 years later. This is so that we can look at what happens, at outcomes, over time.

The information we gather will be about: symptoms and how they initially developed, possible causes (risk factors), social circumstances and disability, symptoms over time, the impact on individuals and families, and about any physical health problems.

We will use this information to compare psychotic disorders between the sites. We will compare how frequent they are and the typical symptoms; outcomes over 2 years; what help is sought and the impact on individuals and families over time; and the occurrence of physical health problems.

What will the programme tell us?

This programme will tell us more about how psychotic disorders differ between different countries and about how to intervene more effectively. Because we have so little information at the moment about these questions, our programme promises to have a big impact, both on our understanding of psychotic disorders and on how to intervene in more diverse settings.

Over 80% of the world's population live in developing countries, but less than 10% of research on psychotic disorders is done in these settings. One important implication of this is that we do not have the knowledge to inform the development of accessible, humane, and effective services in more diverse, often low resource settings.

Our overall aim in this programme is to address the research question: what is the variability - in incidence, presentation, outcome, and impact - of psychotic disorders in diverse developing countries?

We will address this through a five year programme of research in sites in three diverse developing countries: India, Nigeria, and Trinidad, selected to maximise potential comparisons between and within sites. Building on previous pilot work, we will identify, assess in detail, and follow at 2 years, cohorts of 240 cases (with an untreated psychotic disorder) and 240 controls (with no disorder). This will form the basis of four interconnected studies, the primary objectives of which are to describe and compare between and within sites the following aspects of psychotic disorders: (1) incidence and initial presentation, (2) course and outcome, (3) help-seeking by, and impacts on, individuals and families, and (4) the cooccurrence of physical health problems.

This will be the most comprehensive characterisation of psychotic disorders in developing countries ever conducted.

Our findings will shed light on the nature and origins of heterogeneity in psychotic disorders and inform the development of accessible, humane, and effective services in diverse, low resource settings. As such, our programme will have a substantial impact, both on the field and on provision of care.

Over 80% of the world's population live in developing countries, but less than 10% of research on psychotic disorders is done in these settings. This means our knowledge of psychotic disorders in the vast majority of the world is limited. This is important because: 1) we know psychotic disorders - their incidence, presentation, course and outcome, and impact - vary across populations. Knowing more about the nature and origins of these variations in more diverse settings will provide unique insights into the very nature of psychotic disorders; and 2) we do not have the knowledge base to inform the development of accessible, humane, and effective services in these settings.

Who might benefit from this research?

Consequently, our programme will benefit a wide range of groups, including:

Sufferers (users) and carers
Mental health service (e.g., psychiatrists, nurses) and other providers
Service funders and commissioners
Policy makers
Academic community

How might they benefit from this research?

The potential benefits for the academic community are detailed in the section, Academic Beneficiaries.

A wide array of benefits for all those identified above will result, in each site, from our programme of research:

(1) Sufferers and carers will benefit in at least 5 ways. First, the process of conducting the research, which involves asking about needs and burden, will provide an opportunity for sufferers and carers to express their views and highlight their experiences and needs. Second, these views, experiences, and needs will be disseminated widely, including to those with responsibilities to sufferers and carers, from clinicians to policy makers. Three, by providing extensive data to inform service development, sufferers and carers will benefit from any resulting changes (e.g., from strategies to identify and engage those who experience long periods of untreated psychosis). Four, carers specifically will benefit from the greater awareness our programme will create of the challenges and burdens they experience caring for and living with someone with a psychotic disorder. Finally, sufferers will benefit from greater awareness of their physical health needs and from any increased attention to these by providers.

(2) Providers will benefit in at least 3 ways. First, through our programme, they will have a much greater awareness of the extent and types of needs of individuals with a psychotic disorder; and seeking to address these may improve outcomes. Second, providers will know more about the likely proportions of their patients or clients who will experience different outcomes, and the predictors of these. This may enable providers to identify those at risk, for example, of poor outcomes earlier, opening the possibility that care plans can be adapted to reflect this. Third, providers will be much more aware of the importance of physical health and of the types and extent of problems their patients or clients are likely to face. This creates the potential for providers to be more proactive in asking about and screening for physical health problems, especially those that might significantly affect quality of life and possibly impact on outcomes.

(3) Service funders, commissioners, and policy makers will benefit in at least 3 ways. First, they will have concrete information about the rates at which psychotic disorders occur in the populations they serve, including any areas with particularly high rates. This can inform decisions about where to locate services and the likely level of provision required. Second, and along similar lines, these stakeholders will have concrete information about typical outcomes, about the proportions who recovery and who do not. This again is valuable for service planning. Finally, this extends to the information about needs; for example, information about co-occurring physical health problems may have implications for the interface between mental and physical health services.