Until 1960, schizophrenia was viewed as a disease with poor prognosis and mental hospitals were dreaded as places of no return. When the illness struck, patients and families were demoralized and stigmatized. Now that we have medications, community-based treatments and outcome studies, what can be said regarding long-term course? This book summarizes 25 years of WHO-sponsored work to answer this question and counters the notion of a uniformly fixed decline in schizophrenia. It is a comprehensive report on the International Study of Schizophrenia (ISoS) which found that as many as 56% of patients run a more benign course than believed before, and recover, bringing a sense of hope to all concerned.
In the initial chapters, the foundation for ISoS is laid by reviewing its three antecedent studies, International Pilot Study of Schizophrenia (IPSS), Determinants of Outcome in Severe Mental Disorders (DoSMeD), and Reduction and Assessment of Psychiatric Disability (RAPyD). These demonstrated the feasibility of large-scale multinational studies and better 2–5 year outcomes in developing countries than developed countries. Whereas much was learned about cultural differences, no single factor or set of factors, clinical or psychosocial explained the difference in outcomes. In 1995, ISoS was begun at 13 field centers, with 15 cohorts gathered from the above studies and additional samples from Beijing, Chennai and Hong Kong for a total of 1043 subjects. The goals were to find if the short-term differences in outcome had remained over the long-term of 12–25 years, the context in which the outcomes were shaped, and the burden on patient and family. Two findings emerged that have helped change the earlier pessimistic landscape. First, the higher short-term recovery rates were indeed sustained and secondly, the more favorable outcomes in developing countries stood the test of time, firmly placing socio-cultural factors as ‘intermediate causes’ in the unfolding of schizophrenia and greatly allowing for secondary and tertiary prevention strategies. An attempt is made to walk the reader seamlessly through the maze of interrelated cohorts but succeeds only partially. For the average reader, the mix of the final sample may still be confusing. The book is however valuable as a document of success over the challenges faced by investigators conducting multi-national epidemiologic studies, and in providing a truly global perspective on the course of schizophrenia.
There are three sections to the book. Section I provides the backdrop describing WHO activities in schizophrenia, and the study methodology. Section II reports the findings of the three antecedent studies and Section III consists of chapters from 16 sites around the world. The appendix provides 47 tables, with data at baseline, 2-year follow-up, course and outcome by alive, dead and lost to follow-up status. Researchers will find these useful to compare with other studies and develop new hypotheses. There was no master plan behind the primary studies and they varied in goals, entry criteria, sample size, methods, interventions, etc. The picture that emerges of the ultimate ISoS cohort is of a ‘convenience’ sample and raises troubling questions on combining such cohorts to derive common patterns in course or outcome. The editors carefully discuss these limitations and argue for the validity of the findings. They present the strong methodology of ISoS, recounting the extensive training and reliability exercises carried out. An impressive 75–95% of the patients were located 12–25 years after initial study. They found females were easier to trace while males with slow onset often got lost, subjects may have been lost to follow-up because they got better, got worse, committed suicide or died, or reasons such as married and moved out, changed names, etc. The argument that such factors might have contaminated the outcome rates is countered by the fact that Nottingham Centre with 96% follow-up rate had the same outcome as the entire cohort, on average. Yet, it remains that ISoS was not a prospective follow-up study of systematic samples but a cross-sectional, downstream snapshot of uneven cohorts. Luckily for us, the final picture is one of hope and the multi-national fabric woven from these uneven pieces allows for plausible generalization to most schizophrenia cohorts, the world over. Disappointingly, ISoS was unable to further clarify what specific social and cultural factors contribute to the better outcomes in developing countries, although the data shed light on one factor namely social stability. Chandigarh Rural in India and Nottingham in England, both with stable social structures had good outcomes.
ISoS reported the highest rates of recovery in all long-term studies of schizophrenia but the book does not ignore the negatives. 33% of study subjects were continuously ill and 50% exhibited negative symptoms. With a stricter definition of recovery, only 16–25% of schizophrenia subjects could be considered as ‘recovered’. A higher risk for premature death was evident at all centers and in industrialized centers the risk was three times the general population. The reader will be impressed with the two thrusts of the authors, that there is much variability in outcomes and therefore potential to make a difference, and that most people with schizophrenia need considerable help to ‘make it’. Variability was evident even within symptom and function domains of an individual, which opens more targets for therapy. More emphasis could have been given to this aspect of the results in the book.
The chapters from the centers make for some of the most interesting reading with their cultural nuances and variances. Each report presents the cultural context, mental health issues and systems, methods and results, and discusses findings in comparison to other centers. The editors forthrightly admit the limitations including the fact that the data is now more than 10 years old. They note that the field has by now, identified other challenges not addressed by ISoS, impeding a favorable outcome in schizophrenia, such as cognitive impairment and medical co-morbidity. Likewise new treatment options and models have emerged, such as atypical antipsychotics, peer counseling and the recovery model, and the role of these in outcome will have to be addressed in future studies.