Abstract
Background
Since the first OPUS trial 20 years ago, structured clinical assessments have been collected from a cohort of first episode psychosis patients at 2, 5 and 10 years follow-up. They found that the symptomatology of patients clustered in distinct groups, and they were able to determine stable long-term trajectories of positive and negative symptoms. The Suffolk County Medical health project has followed patients after a first episode psychosis for 20 years. They also found a stable course of trajectories but with an overall significant worsening of symptom severity over time. The 20 year OPUS follow-up will give us the first opportunity to assess the long term outcome in a large representative cohort treated within modern mental health services with treatment available for all.
Methods
From 1998 to 2000 578 participants were randomized to OPUS or TAU. Baseline characteristics of the cohort were as follows: mean age 26.6 years, 59% were males, 66% had a diagnosis of schizophrenia and 27% had a secondary diagnosis of alcohol or substance abuse
At the 20 year follow-up the investigators will be blinded to the original treatment allocation. The patients who wish to participate will be assessed using SAPS, SANS, SCAN, PSP and GAF. Socio-demographic factors and suicidal ideation will be register via self report. Cognitive function will be tested using BACS and all participants will be asked to fill out a number of self-rating questioners including WHO quality of life-BREF, self-perceived health, strengths and difficulties, the parenting scale and self-perceived negative symptoms.
Using national Danish registers we can collect information on all former participants regarding the use of psychiatric and general healthcare services, medication, supported housing or homelessness, employment status, substance abuse and mortality.
Results
The OPUS 20 study started collecting data in Jan 2018. We are attempting to contact as many patients as possible from the 578 participants in the original OPUS cohort. At the time of writing we had included data and attempted contact to 322 participants. Overall 104 people (31,7%) have agreed to participate in the interviews. In the follow-up 10 years ago, the participation-rate was 60% so this is a big drop in participation rate. 41 (14%) have died, 31 (9,5%) were lost due to emigration, homelessness or hidden identity and/or disempowerment. 70 (21,3%) didn’t wish to participate and 76 (23,2%) never responded.
Discussion
Psychotic disorders and schizophrenia in particular are associated with progressive worsening of symptoms and profound social impairment, and as such are still very stigmatized. Results from the 10 year OPUS follow-up found stable trajectories of positive and negative symptoms over time, with a tendency of reduction and stabilization of positive symptoms but less variation of negative symptoms. They found poor but stable social functioning with a mean GAF score of 55 after 10 years. The Suffolk County mental health project also found stable trajectories of psychopathology measured with SAPS and SANS. They however found progressive worsening of GAF scores declining form 49 points at the beginning to 36 after 20 years.
So far we have seen stable GAF scores and SAPS and SANS scores compared to OPUS 10. This gives rise to some optimism about the prognosis for schizophrenia compared to the findings of the Suffolk study.
In our study the extensive interviews combined with the data collected form Danish registers give us a unique opportunity to look at the long term course of illness after FEP. The ability to test if previous findings are robust over time will be essential to the development of targeted interventions, differentiated to the needs of different patient groups.
The Epidemiology of Psychosis: The Suffolk County Mental Health Project