India-Canada early psychosis collboration

Working closely with local partners, Iyer helped establish one of India’s first early psychosis clinics with integrated research capacity at the Schizophrenia Research Foundation (SCARF) in Chennai, India and a longstanding, ongoing India-Canada research collaboration in early psychosis.  
 

A large cohort of persons with first-episode psychosis and their families were followed for two years at the first-episode service in SCARF, Chennai, India and the Prevention and Early Intervention Program for Psychosis in Montreal, Canada. The study used quantitative and qualitative methods to understand and compare a range of outcomes (symptoms, work/school/social/caregiving, recovery, service engagement, hope, quality of life) and family involvement at the two sites. So, what have we found so far?
 

Did you have to create any measures to do this work?

• Yes, we have co-designed, created, or adapted and validated many patient-reported, family-reported and clinician-reported youth-friendly measures in Tamil and English in Chennai and French and English in Montreal, Canada. These are available free of charge and can be adapted! Some are excitingly novel in terms of design and what they measure – see the ShareDISK! 
   

Do outcomes vary across contexts?

• Persons with psychosis in Chennai experienced greater improvements in negative symptoms (e.g., lack of motivation, energy or pleasure) than those in Montreal.

• Delusions were present more frequently at baseline in Montreal but were less frequent in Montreal than in Chennai at month 12. There were no site differences at Month 24.  

• Persons with psychosis in Chennai also reported higher general life satisfaction over two years than did Montreal patients.

• When it came to prosocial, recreational and independent functioning, persons with psychosis in Montreal had higher scores than those in Chennai. But unfortunately, at both sites, these areas were in the low-to-moderate range and there was no improvement over time.   
   

Why do outcomes differ?

• Family and social support contributed to the better negative symptoms and general life satisfaction in Chennai and predicted whether persons with psychosis remained in treatment or prematurely left.

• Those who experienced early remission (i.e., their symptoms improved within the first three months of treatment) did better later too with respect to negative symptoms and delusions.

• Level of expectations about the independence-performance of persons with psychosis seemed to influence their actual independence-performance scores.
   

Do treatment journeys, expectations and experiences differ?

• Significantly more persons with psychosis in Montreal disengaged (or stopped coming) before completing treatment in Montreal than in Chennai.

• Persons with psychosis in Chennai and their families had higher trust in healthcare providers and the healthcare and mental healthcare systems.

• Persons with psychosis in Chennai and their families also reported that they received higher levels of support from their treating teams. This difference was particularly stark between Chennai and Montreal families. Fortunately, while these differences were there, persons with psychosis and their families at both sites generally felt well supported by their treatment teams.

• At both sites, persons with psychosis, their families and clinicians thought that governments should have substantial responsibility for meeting the needs of individuals with mental health problems.

• Chennai stakeholders assigned more responsibility to families for supporting persons with mental health problems than those in Montreal. But, in Chennai and Montreal, families felt they had a bigger role than persons with psychosis and clinicians did – pointing to a mismatch.

• How stakeholders feel also depends on what needs we are talking about – so, when it comes to supporting needs related to substance use problems, Chennai stakeholders felt families and governments were less responsible.
   

Most importantly, this collaboration has created sustainable capacity. The early psychosis program at SCARF in India is a leader in the region and now partners in many international research projects. To our knowledge, this collaboration has resulted in the maximum number of papers involving early psychosis programs in LMICs.