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

Lead Research Organisation: King's College London
Department Name: Health Service and Population Research

Abstract

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.

Technical Summary

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.

Planned Impact

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.
 
Description King's Global Engagement Partnership Fund
Amount £5,000 (GBP)
Organisation King's College London 
Sector Academic/University
Country United Kingdom
Start 08/2020 
End 07/2021
 
Description PSYchosis MAPping in kwaZulu-Natal (PSYMAP-ZN)
Amount £623,802 (GBP)
Funding ID MC_PC_MR/S008179/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 01/2019 
End 12/2021
 
Description Columbia University 
Organisation Columbia University
Country United States 
Sector Academic/University 
PI Contribution Contribution to: 1) writing papers; 2) research presentations
Collaborator Contribution Contribution to: 1) writing papers
Impact Paper: PubMed ID 18669521 Book chapter: March, D., Morgan, C., Bresnahan, M., & Susser, E. (2008) Conceptualising the social world. In Society and Psychosis, eds. C. Morgan, K. McKenzie, & P. Fearon. Cambridge: Cambridge University Press, pp. 41-57. Not listed in PubMed
Start Year 2007
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation Addis Ababa University
Country Ethiopia 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation Centre For Mental Health Law And Policy
Country India 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Country United Kingdom 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation McGill University
Country Canada 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation Schizophrenia Research Foundation
Country India 
Sector Charity/Non Profit 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation University of Hong Kong
Country Hong Kong 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation University of Ibadan
Country Nigeria 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation University of South Florida
Country United States 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description Lancet Psychiatry Commission on psychoses in global context 
Organisation University of the West Indies at St. Augustine
Country Trinidad and Tobago 
Sector Academic/University 
PI Contribution We are leading this initiative, which aims to provide a definitive summary of global evidence on psychoses, identify current gaps in our knowledge of psychoses from a global perspective, set out a roadmap for researchers, funders, service planners and policymakers to address key challenges in reducing the global burden of psychotic disorders, and issue a call to action targeted at influencing international and national level policy and advocacy efforts, to prioritise psychotic disorders in the global health agenda.
Collaborator Contribution We are working with leading experts from around the world (including both academic experts and experts by experience) to review the evidence and pull together a comprehensive report and set of recommendations. Our partners have been divided into four working groups, each led by someone with extensive expertise in a particular area, to drive this work forward, as well as an editorial board to oversee progress and ensure coordination between the groups.
Impact The Commission's work is ongoing, and will conclude with substantial outputs in early 2022.
Start Year 2020
 
Description SCOPE 
Organisation Addis Ababa University
Country Ethiopia 
Sector Academic/University 
PI Contribution Extension and expansion to site in Ethiopia, funded by Wellcome Trust. INTREPID has provided the template for this study.
Collaborator Contribution Enabled expansion to another site, allowing for direct comparisons between data collected as part of our award (INTREPID) and the new project in Ethiopia.
Impact Award of ~ £1,200,000 by Wellcome Trust
Start Year 2020
 
Description SIRS Harmonisation 
Organisation University of Groningen
Country Netherlands 
Sector Academic/University 
PI Contribution Co-lead international project, funded by the Schizophrenia International Research Society, to begin harmonisation of research methods for international population based research on psychotic disorders
Collaborator Contribution Co-lead international project, funded by the Schizophrenia International Research Society, to begin harmonisation of research methods for international population based research on psychotic disorders
Impact Award of £5000 to support the work
Start Year 2020
 
Description INTREPID newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We have produced an annual newsletter, written in lay language and designed to be accessible to a wide audience, describing the background to the programme, research progress, insights into the process of doing this research, and preliminary findings, which is sent to subscribers and disseminated via Twitter, the INTREPID website, and the websites and mailing lists of various groups that INTREPID II has links with (e.g. the Centre for Global Mental Health, the Centre for Society & Mental Health, etc.) This has helped us to build our networks - both within and outside academia - to facilitate research uptake once our baseline findings are published, and future collaborations.
Year(s) Of Engagement Activity 2019,2020,2021
 
Description Invited Keynote Talk: Society and Mental Health (Psychoses) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Key note talk at Edinburgh University to mark establishment of a University wide network for mental health research
Year(s) Of Engagement Activity 2022
 
Description News article (India) 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact News article to raise awareness of the issues addressed by the programme, and previous related findings by the INTREPID partners
Year(s) Of Engagement Activity 2019
URL https://timesofindia.indiatimes.com/city/chennai/chennai-based-researchers-link-schizophrenia-to-nap...
 
Description News article (Nigeria) 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact News story to raise awareness of issues addressed by study and previous research findings from pilot
Year(s) Of Engagement Activity 2019
URL https://thenationonlineng.net/psychotic-disorders-high-in-oyo/
 
Description News coverage (Trinidad) 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact News article to raise awareness of the research issues addressed by the study
Year(s) Of Engagement Activity 2019
URL https://newsday.co.tt/2019/05/24/schizophrenia-disorder-high-in-tt/
 
Description Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Newsletter to update on study progress and findings.
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.intrepidresearch.org/
 
Description Online engagement through social media 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We have an active Twitter account with a growing following, through which we share relevant research findings and engage in debates relevant to the questions that INTREPID II addresses. This has helped to build our profile and networks, to support research uptake once our baseline findings start to be published, and has led to fruitful discussions with professionals and activists working with people with severe mental illness in the settings where INTREPID II is being conducted, to inform future research priorities.
Year(s) Of Engagement Activity 2018,2019,2020,2021
URL https://twitter.com/INTREPID_psych
 
Description Psychoses in Global Context (Harvard University) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk at Harvard School of Public Health on our global work on psychoses, which stimulated discussion and questions and led to increased interest in the area and potential collaborations.
Year(s) Of Engagement Activity 2022
 
Description Roundtable event on psychosis and global mental health 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We organised a public event exploring the issue of psychosis around the world, which was attended by over 180 people in person and live-streamed online, with 411 Tweets of the official hashtag by 168 people in more than 20 countries. Attendees included clinicians and mental health professionals, service users, representatives of NGOs, academics, students, and others with an interest in psychotic disorders. The event generated substantial debate, both offline and online, around how we support people with psychosis and the role of research in promoting better outcomes for people living with psychotic disorders around the globe, particularly in low-resource settings. Several people subsequently got in touch with members of the INTREPID II research programme to ask for more information or enquire about collaborations.
Year(s) Of Engagement Activity 2019
URL https://www.centreforglobalmentalhealth.org/news/psychosis-global-mental-health-roundtable
 
Description Website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Study website, to provide information about the study.
Year(s) Of Engagement Activity 2019
URL https://www.intrepidresearch.org/