Innovation summary

Psychotic disorders, such as schizophrenia, affect over 20 million people globally, are a substantial contributor to the global burden of disease, and are associated with high rates of disability and mortality1-3. However, the vast majority of research that has been conducted on psychotic disorders has been carried out in North America, Western Europe, or Australasia4. This means that our understanding of psychotic disorders in Africa, Asia, Latin America and the Caribbean, where over 80% of the world’s population lives, remains limited.

The INTREPID programmes contribute to closing this knowledge gap. INTREPID I (funded by Wellcome Trust) developed and piloted the case-finding methods necessary to conduct rigorous cross-cultural population-based research in three very different settings in the global south (in India, Nigeria and Trinidad)5,6. INTREPID II (funded by the MRC) applied these methods to investigate the incidence, presentation, risk factors, course, outcomes, comorbidity, and impact of psychotic disorders in the same settings, including investigating variations within and between settings. INTREPID III (funded by the MRC) builds on the findings from INTREPID II to explore the mechanisms underlying the risk and protective factors identified, investigate longer-term course and outcomes, develop a global data platform to facilitate collaboration and data sharing, and develop evidence-based services and interventions that are in line with local needs.

Impact summary

  • The goal of the programme is to identify and recruit ≥240 untreated cases of psychosis and age- and sex-matched controls, as well as a relative/caregiver, in catchment areas in India, Nigeria, and Trinidad
  • INTREPID is an observational, epidemiological study.
  • Findings from INTREPID II are impacting clinical practice and service delivery in each setting.
  • INTREPID has a strong presence in each setting and has increased awareness of psychosis among practitioners, service directors, and policy makers 

"We are delighted to receive funding to continue our programme of research in India, Nigeria, and Trinidad. This continues a 15 year collaboration. We hope this next phase will continue to provide novel and important insights that can contribute to improving services and interventions for people who experience psychosis in diverse settings in the Global South."

 

Craig Morgan, Professor of Social Epidemiology at the IoPPN and Principal Investigator of INTREPID I, II & III

Innovation details

The majority of population-based research on psychotic disorders has been conducted in a small number of high-income countries, which limits our understanding of psychosis and impedes the development of locally appropriate services around the world. INTREPID II was a 5 year programme funded by the UK Medical Research Council to generate evidence in catchment areas of India, Nigeria and Trinidad on variations in:

  1. incidence and presentation
  2. two year course and outcome
  3. impact and help-seeking
  4. physical health, of people living with previously-untreated psychosis

We used methods developed in an earlier pilot programme (INTREPID I, funded by the Wellcome Trust) to ensure that participant cohorts were as representative as possible, even in those settings where many people do not access formal services. We also recruited matched control participants without psychosis from the local area, as a comparison group. Both groups were followed up for two years, with close coordination between the teams in each setting to ensure that the data collected are comparable. The results so far show considerable heterogeneity between the three settings in incidence, presentation, help-seeking and physical health. Further analyses are ongoing.

The INTREPID III programme will begin in July 2023 and will build on the INTREPID II findings to investigate:

(a) medium-term course and outcomes

(b) mechanisms underlying the observed variation in rates of psychosis and outcomes

(c) the specific profiles and needs of homeless populations

(d) potential interventions based on the needs identified in each setting, in collaboration with people with lived experience of psychosis and carers

 

This programme will also establish a platform for data sharing and research collaboration on psychosis around the world, and develop a training and development programme to enhance research capacity

Key drivers

Local expertise

  • The INTREPID consortium includes leading psychosis researchers in each of the countries where the programme is implemented, providing strong local leadership and a good understanding of each context.

Effective coordination between teams

  • Ensuring that the data generated can be meaningfully compared, and that any differences observed between sites reflect genuine differences rather than methodological differences, requires ongoing coordination of research activities and standardisation exercises (e.g. inter-rater reliability checks).

Pilot work

  • Previous formative work and feasibility testing was key to establishing research methods that are feasible and comparable across three very different settings, particularly in terms of case-finding, control recruitment, and follow-up.

Challenges

Balancing cross-site reliability with local validity

  • Wherever possible, we have used measures and instruments that have been previously validated in the local settings and recommended for cross-cultural research. However, some adaptations have been necessary to ensure that these adequately capture the concepts they intend to measure across diverse settings, and in some cases better measures are needed that can adequately capture measures of importance to users and carers.

Collecting biological samples

  • Refusal rates have been high in some sites due to fear of needles and local concerns about the providing biological samples for research purposes.

Stigma

  • Psychotic disorders are still highly stigmatised in many settings, which leads to: 
    • Difficulties in identifying individuals with psychosis since many people do not wish to be traced after using psychiatric services
    • Reluctance to participate by controls for fear of being associated with a study of serious mental illness
    • Individuals with psychosis declining to nominate a relative to avoid disclosure of their condition
    • Under-reporting of problems by controls for fear of being given a psychiatric diagnosis.
  • The same applies to some risk factors, such as abuse, which may be under-reported due to stigma.

Continuation

We have received funding to extend our work on the INTREPID programme through INTREPID III (2023-2028), in which we will further explore drivers of heterogeneity in psychosis to improve our understanding of both onset and recovery, and work with stakeholders in each setting to translate our findings into innovations for service improvement and new interventions, tailored to local needs.

Partners

Funders

Evaluation methods

INTREPID II was an observational, epidemiological research programme. Its intended impact is to inform the development of services and public health strategies in each study site (India, Nigeria, Trinidad). Impacts are documented as the programme progresses and those to date are briefly detailed above. In INTREPID III we will continue working toward ensuring impacts, by actively engaging with key stakeholders in each setting and working to translate the insights from INTREPID II and III into policy proposals, service reforms, and intervention development. For more details: www.intrepidresearch.org.

Impact details

  • INTREPID is an observational, epidemiological study. Nonetheless, the conduct of INTREPID has positively impacted and directly benefited participants. For example, in Kancheepuram (India) and Ibadan (Nigeria), where most individuals with a psychotic disorder do not receive any form of mental health care, field researchers have facilitated access to clinical care and other support for substantial numbers of participants who would otherwise remain untreated.
  • Findings from INTREPID II are impacting clinical practice and service delivery in each setting. For example, in Kancheepuram, our findings that most individuals with a psychotic disorder are untreated, despite the close proximity of free mental health services, and that they experience high rates of comorbid physical health problems and mortality, has led the Government of Tamil Nadu to commission the Schizophrenia Research Foundation to train community health workers in rural areas to provide support and care and to facilitate access to specialist services. In Ibadan, our findings that around half of those we identified with a psychotic disorder were in the care of traditional healers and that comorbid physical health problems were common, have informed the development of links between traditional healers and public health services, creating referral pathways for individuals in need of care for both mental and physical health. In Trinidad, our finding that cannabis use is common and strongly associated with increased odds of psychosis has contributed to plans to establish cannabis use clinics in public mental health services.
  • More broadly, INTREPID has a strong presence in each setting and has increased awareness of psychosis among practitioners, service directors, and policy makers (including the extent of needs for care, the impacts on sufferers and families, and the importance of generating locally contextualised knowledge).

References

  1. Saha S et al. (2007). A systematic review of mortality in schizophrenia: is the differential mortality gap worsening over time? Archives of general psychiatry, 64(10):1123-31.
  2. McGrath J et al. (2008). Schizophrenia: a concise overview of incidence, prevalence, and mortality. Epidemiologic reviews, 30(1):67-76.
  3. Charlson FJ et al. (2018). Global Epidemiology and Burden of Schizophrenia: Findings From the Global Burden of Disease Study 2016. Schizophrenia bulletin, 44(6), pp.1195-1203
  4. Jongsma, HEet al. (2019). International incidence of psychotic disorders, 2002–17: a systematic review and meta-analysis. The Lancet Public Health, 4(5), pp.e229-e244.
  5. Morgan C et al. (2016). The incidence of psychoses in diverse settings, INTREPID (2): a feasibility study in India, Nigeria, and Trinidad. Psychological medicine, 46(9):1923-33.
  6. Morgan, C et al. (2015) Searching for psychosis: INTREPID (1): systems for detecting untreated and first-episode cases of psychosis in diverse settings. Social Psychiatry and Psychiatric Epidemiology 50(6), 879-893. doi:10.1007/s00127-015-1013-6

Research

Tools

Multimedia

Reports

Associates

Tessa Tessa Roberts
Craig Morgan
Alex Cohen
Helen Weiss
Sujit John

Comments

Submitted by Michael Ede on Monday, 29th July 2019
This is very interesting. which ever organization that is implementing this project should involve our support group members who comprises of patient and carers. #soul&bodysupportgroup. www.sbsg.org.ng. Thanks.
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Country

India, Trinidad and Tobago, Nigeria

Affiliated organizations

Centre for Global Mental Health (CGMH)

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