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.

INTREPID II contributes to closing this knowledge gap, by investigating the incidence, presentation, risk factors, course, outcomes, comorbidity, and impact of psychotic disorders in three countries – India, Nigeria and Trinidad – including investigating variations within and between settings. Innovative and comprehensive case finding methods were developed as part of a pilot project (INTREPID I) to ensure the representativeness of the sample5-6. This work will inform the service planning and public health strategies to reduce the burden of psychotic disorders that are locally appropriate in these socially, economically, and culturally diverse settings.

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
  • The project is currently in the process of collecting extensive data about these individuals, and will follow them up for 2 years

"Because there is so little information at the moment about these questions, INTREPID II promises to have a big impact, both on our understanding of psychotic disorders and on how to intervene in more diverse settings."

- Craig Morgan, Professor of Social Epidemiology at the IoPPN and Principal Investigator of INTREPID II

Innovation details

Evidence suggests that there are cross-cultural variations in the distribution, presentation, aetiology, and outcome of psychotic disorders, although the majority of research on psychotic disorders has been conducted in a small number of high-income countries. This evidence may therefore give us a distorted view of these conditions, and it is unclear whether this knowledge base is generalisable to the rest of the world in order to develop locally appropriate services. Increasing the diversity of settings and populations in psychosis research can therefore provide new insights into psychotic disorders, but can also generate robust local data to inform service planning in contexts where evidence is currently scarce. INTREPID II is generating evidence in India, Nigeria and Trinidad, with regard to:

  1. Incidence, presentation and risk factors
  2. 2-year course and outcome
  3. Impact and help-seeking
  4. Physical health

Further, biological samples will investigate genetic biomarkers of psychosis.

There are major challenges to conducting this type of research in diverse settings where a large proportion of people with psychosis do not access formal mental health services. To ensure that the cohorts are as representative as possible, we have developed comprehensive case-finding methods that encompass the professional sector (e.g. mental health services), the folk sector (e.g. traditional and faith healers) and the popular sector (e.g key informants in the community).

Previous research has rarely included controls, to compare data from people with psychosis with local population norms, and so we have developed strategies for recruiting matched controls from the same local area. Attrition is another common problem encountered in existing research of this sort, and so the INTREPID teams are regularly checking in with participants and have trialled methods of reducing loss to follow-up. We have also established close coordination between the three sites to ensure that the data collected are directly comparable.

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

  • 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).

Piloting

  • Prior formative work and feasibility testing was key to establish research methods that are workable within 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 beliefs around the use of bodily fluids for nefarious purposes.

Stigma

  • Psychotic illnesses are still highly stigmatised in many settings, which leads to: 
    • Difficulties in identifying cases since people do not wish to be traced after using psychiatric services
    • Reluctance to participate by controls for fear of being associated with a psychosis study
    • Cases 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 sexual abuse, which may be under-reported due to stigma.

Continuation

  • In future we hope to extend this research by following up the cohort over longer periods and by expanding to other sites where evidence on psychosis is scarce, and are actively seeking funding to do this.
  • We’re also developing public engagement and stakeholder engagement strategies in each site to promote research uptake in order to translate our results into public health impact, as well as to involve key stakeholder groups in longer-term research efforts.
  • INTREPID II is lucky to have several talented junior researchers working on the programme, who have gained substantial experience through doing this work, so we are also currently exploring capacity building opportunities for these researchers to ensure that this talent is retained to take this research agenda forward in future.

Evaluation methods

Cohorts of ≥240 untreated cases of psychosis and age- and sex-matched controls will be recruited, as well as a relative/caregiver, and these individuals will be followed for 2 years in catchment areas in India, Nigeria, and Trinidad. Detailed clinical, demographic, social, genetic and qualitative data will be collected at baseline and 2 year follow-up, using methods developed during previous pilot work.

This is an observational research programme rather than an intervention study. Its intended impact is to inform the development of services and public health strategies in each study site (India, Nigeria, Trinidad).

Impact details

At present the research is still ongoing. However, we will update this page with details of the impact that it has had in each site once data collection is completed.

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

Comments

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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India, Trinidad and Tobago, Nigeria

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