WHO Collaborative Study: Rochester Site Cohort

World Health Organization Collaborative Study of Long-Term Course and Outcome in Schizophrenia: Rochester Site Cohort Follow-Up Study

Center Co-investigator: Kim Hopper, Ph.D., in collaboration with Lyman Wynne, MD, Ph.D., and Tara Tayyabkhan, University of Rochester; and Sharon Holmberg, Ph.D., RN

PROJECT GOALS

This project is part of the Center's ongoing focus on recovery. The overall objective of the World Health Organization (WHO) collaborative project is to describe the long term course and outcome of a diverse cross-cultural sample of individuals diagnosed with schizophrenia and related disorders.

The Rochester NY study cohort was originally diagnosed more than 15 years ago as part of the WHO study, Determinants of Outcome of Severe Mental Disorders (DOSMeD). The present status of the subjects of this study are being assessed by field researchers at 15 centers in eleven countries. Clinical history and present social functioning are being carefully determined using an extensive battery of diagnostic and assessment instruments, and when possible designated family members are being interviewed as well.

Researchers from the Center are working with 116 original cohort members from the Rochester site, but are concentrating efforts for this phase on locating the 54 individuals considered by WHO to be part of the "two-year incidence cohort," whose short-term follow-up was described in a 1992 supplement to Psychological Medicine.

RESEARCH ACTIVITIES AND RESULTS

During the study's first year in 19951996, activities focused on re-locating and contacting subjects most of whom were last interviewed 13 years earlier, seeking their consent for participation in the study, with investigators then conducting lengthy follow-up interviews. Twenty-five subjects were found and interviewed using the WHO package of instruments; for two subjects, collaterals were interviewed. Thirteen individuals refused follow-up, and 14 could not be found or had family who essentially refused participation for the subject. For 21 subjects, the Rochester Recovery Inquiry was also completed.

In 1996-1997 data were posted for analysis. A preliminary draft of a quantitative analysis was prepared, critiqued, and a final draft submitted and prepared for publication as part of a monograph reporting on the entire International Study of Schizophrenia (ISoS) study. First drafts of case narratives exploring complexities of recovery were prepared, edited and readied for publication.

Subsequently, reanalysis was conducted of the DOSMeD data, Rochester NY being one of the sites of the original cohort. The study looked at two-year outcome using a relatively new statistical method, recursive partitioning. The original finding of the overall WHO study found better outcomes for subjects could be seen in developing countries rather than in already developed nations. This finding was somewhat modified with better outcomes found in Nottingham and Prague, representing developed areas. However, individuals in the Rochester NY tended to exhibit poorer short term outcomes.

SIGNIFICANCE OF FINDINGS/ POLICY IMPLICATIONS

These findings from the Rochester NY cohort join those produced by the very small number of North American long-term follow-up studies to date. Together with results from the Honolulu HI site, they represent the U.S. centers that were part of the WHO Collaborative study. This project represents a significant epidemiological complement to the Center's broader focus on recovery. The study's course and outcome measures, coupled with the subjects' own reflections from the newly designed Rochester Recovery Inquiry, afford a much needed long-term perspective on the trajectory of both persons with SMI and others who cope with the problems of severe mental illness.

PLANS

Of particular interest is the comparative perspective afforded by the other participating centers, especially with respect to the durability of the early (two-year) course differential favoring those centers in the developing world. Preliminary examination suggests that the different outcome diagnostic conformity (e.g., inclusion of single episode psychoses) is controlled for. Variables from local surveys of treatment systems and selected aspects of culture (attitudes toward mental illness, work and the role of the women and family) are included in an analysis currently under way concerned with distinguishing predictor variables of outcome.

Publications and Presentations

Paper:

Craig, T., Siegel, C., Hopper, K., Lin, S. and Sartorius, N.(1997). Outcome in schizophrenia and related disorders compared between developing and developed countries: A recursive partitioning re-analysis of the WHO DOSMeD data. British Journal of Psychiatry, March, 1997.

Presentations:

Siegel, C., Baker, S., Wanderling, J. and Hopper, K. Predicting long term outcome in the ISoS sample. WHO Work Group Meeting. Groningen, The Netherlands, October 1996.

Hopper, K. and Wanderling, J. How Culture Matters: Revising the Developed vs. Developing Country Differential in the WHO Studies of Schizophrenia. Annual Meeting of the International Federation of Psychiatric Epidemiology, Taipie, Taiwan, March 7-10, 1999.

Project Completed

Entered: April 12, 1999
Edited: 12/16/02

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