Recovery from Schizophrenia An International Perspective A

Report from the WHO Collaborative Project, the International

Study of Schizophrenia 1st Edition

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 1
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Library of Congress Cataloging-in-Publication Data
Recovery from schizophrenia : an international perspective—results
from the WHO-coordinated international study of schizophrenia
(ISoS) / edited by Kim Hopper ... [et al.].
p. ; cm.
Includes bibliographical references.
ISBN-13: 978-0-19-531367-3
ISBN-10: 0-19-531367-4
1. Schizophrenia—Epidemiology. I. Hopper, Kim.
[DNLM: 1. World Health Organization. 2. Schizophrenia—therapy.
3. Follow-Up Studies. 4. International Cooperation. 5. Treatment
Outcome. WM 203 R3124 2007]
RC514.R385 2007
362.2'6—dc22 2006026433

1 3 5 7 9 8 6 4 2
Printed in the United States of America
on acid-free paper
 Contents

Contributors vii
Introduction xi
Acknowledgments xvii
Abbreviations xix

Part I Background 7 Identifying Prognostic

Factors That Predict Recovery
1 Twenty-five Years of WHO-
in the Presence of Loss to
Coordinated Activities
Follow-Up 69
Concerned with Schizophrenia 3
Christiana Drake, Richard Levine,
Norman Sartorius
and Eugene M. Laska

2 Study Methodology 10
Carole Siegel, Eugene M. Laska, Part III The Centers
Joseph A. Wanderling, Sherryl Baker, section iii.a International Pilot Study
Glynn Harrison, Rheta Bank, of Schizophrenia (IPSS) 75
and Morris Meisner Ctirad Skoda

Part II Findings 8 IPSS: Agra, India 77

K. C. Dube and Narendar Kumar
3 An Overview of Course and
Outcome in ISoS 23 9 IPSS: Cali, Colombia 85
Kim Hopper, Glynn Harrison, Carlos A. León and Agatha León
and Joseph A. Wanderling
10 IPSS: Prague, Czech Republic 100
4 Predictors of Long-Term Ctirad Skoda, Pavel Baudis,
Course and Outcome for and Eva Dragomirecká
the DOSMeD Cohort 39
Carole Siegel, Joseph A. Wanderling,
section iii.b Determinants of Outcome
Shang Lin, and Sherryl Baker
of Severe Mental Disorder
(DOSMeD) 113
5 Long-Term Diagnostic Stability
Vijoy K. Varma
in International Cohorts of
Persons with Schizophrenia
11 Chandigarh, India 115
and Related Psychoses 50
Vijoy K. Varma and Savita Malhotra
Thomas J. Craig, Joseph A.
Wanderling, and Aleksandar Janca
12 Dublin, Ireland 129
Aine Finnerty, Fiona Keogh, Anne
6 Long-Term Mortality Experience
O’Grady Walshe, and Dermot Walsh
of International Cohorts of
Persons with Schizophrenia
13 Honolulu, Hawai’i 141
and Related Psychoses 61
Anthony J. Marsella, Edward Suarez,
Thomas J. Craig, Dei-In Tang,
Thomas Leland, Heather Morse,
Norman Sartorius, Eugene M. Laska,
Barbara Digman, Alice Scheuer, and
and Robert Cancro
Martin M. Katz
vi C O N T E N T S

14 Moscow, Russia 152 section iii.d Retrospective Analysis

Sergey Tsirkin (RA)/Invited Centers 241
R. Thara
15 Nagasaki, Japan 164
Yoshibumi Nakane, Koichi Takada, 21 Beijing, China 243
Kazuyasu Yoshitake, and Keiko Hatada Changhui Chen and Yucun Shen

16 Nottingham, U.K. 177 22 Hong Kong 255

Glynn Harrison and Peter Mason Peter W. H. Lee, F. Lieh-Mak, K. Y. Mak,
Amy S. M. Fung, M. C. Wong,
17 Rochester, New York 189 and Julia Lam
Lyman C. Wynne and Sharon Holmberg
23 Chennai (Madras), India 266
section iii.c Reduction and Assessment R. Thara, S. Rajkumar,
of Psychiatric Disability and A. Albert Joseph
(RAPyD or Disability) 201
Durk Wiersma and Fokko J. Nienhuis Conclusion 277
Kim Hopper, Glynn Harrison,
18 Groningen, The Netherlands 203 Aleksandar Janca, Norman Sartorius,
Durk Wiersma, Fokko J. Nienhuis, and Durk Wiersma
Cees J. Slooff, Robert Giel, and
Ate de Jong Appendices Tabular Material
a Baseline and Short-Term
19 Mannheim, Germany 215
Follow-Up 285
Wolfram an der Heiden,
Bertram Krumm, Sabine Müller,
b Course and Outcome
Marianne Schäfer, Bettina Schwerd, and
for Alive Cohort 302
Iris Weber

c Deceased Subjects 348

20 Sofia, Bulgaria 227
Kimon Ganev, Georgi Onchev, and
Index 355
Plamen Ivanov
 Contributors

Sherryl Baker, Ph.D. Eva Dragomirecká, M.D.

Former Research Scientist Senior Researcher, Department of Social Psychiatry
Nathan Kline Institute for Psychiatric Research Prague Psychiatric Center
Orangeburg, New York Prague, Czech Republic

Rheta Bank, M.A.* Christiana Drake, Ph.D.

Former Director, Educational Technology Professor of Statistics
Department University of California, Davis
Nathan Kline Institute for Psychiatric Research Davis, California
Orangeburg, New York
K.C. Dube, M.D.*
Pavel Baudis, M.D. Former Professor of Psychiatrist and Senior
Psychiatrist Medical Superintendent
Formerly with ISoS Collaborative Study Mental Hospital
Prague Field Research Center Agra, India
Prague, Czech Republic Aine Finnerty
St. Canice’s Hospital
Robert Cancro, M.D., [Link].
Kilkenny, Ireland
Former Director
Nathan Kline Institute for Psychiatric Research Amy S. M. Fung
Lucius N. Littauer Professor of Psychiatry Formerly with ISoS Collaborative Study
New York University Medical Center Hong Kong Field Research Center
New York, New York Hong Kong
Changhui Chen, M.D. Kimon Ganev, M.D.
Professor and Physician, Retired Clinical Director
Beijing Medical University Mental Health Centre Dinamika
Beijing, China Visiting Lecturer
New Bulgarian University
Thomas J. Craig, M.D. Sofia, Bulgaria
Chief Quality and Performance Officer
Department of Veterans Affairs Robert Giel, M.D.
Washington, DC Emeritus Professor
University Medical Center Groningen
Ate de Jong, Ph.D. Department of Psychiatry
University Medical Center Groningen University of Groningen
Department of Psychiatry Groningen, The Netherlands
University Medical Center
Groningen, The Netherlands Glynn Harrison, M.D., FRCPsych
Norah Cooke Hurle Professor of Mental Health
Barbara Digman University of Bristol
Formerly with ISoS Collaborative Study Former Professor of Community Mental Health
Honolulu Field Research Center University of Nottingham
Honolulu, Hawaii United Kingdom

* Deceased.

vii
viii C O N T R I B U T O R S

Wolfram an der Heiden, Dipl.-Psych Narendar Kumar, M.D.

Deputy Head Deputy Director General
Schizophrenia Research Group Indian Council for Medical Research
Central Institute of Mental Health New Delhi, India
Mannheim, Germany
Julia Lam
Keiko Hatada Formerly with ISoS Collaborative Study
Formerly with ISoS Collaborative Study Hong Kong Field Research Center
Nagasaki Field Research Center Hong Kong
Nagasaki, Japan
Eugene M. Laska, Ph.D.
Sharon Holmberg, Ph.D., RN Director, Statistical Sciences Laboratory
Associate Professor of Nursing Nathan Kline Institute for Psychiatric Research
Decker School of Nursing Orangeburg, New York
Binghamton University
Peter W.H. Lee, M.D.
Binghamton, New York
Professor in Clinical & Health Psychology
Kim Hopper, Ph.D. Department of Psychiatry
Research Scientist The University of Hong Kong
Nathan Kline Institute for Psychiatric Research Hong Kong
Orangeburg, New York
Thomas Leland, M.D.
Professor of Clinical Sociomedical Sciences
Chief Psychiatrist
Mailman School of Public Health, Columbia
Kalihi-Palama Mental Health Services
University
Clinical Professor, Department of Psychiatry
New York, New York
John Burns School of Medicine
Plamen Ivanov Hawaii
Formerly with ISoS Collaborative Study Agatha León, Ph.D.
Sofia Field Research Center Director
Sofia, Bulgaria Chiquitines
Aleksandar Janca, M.D., FRCPsych, FRANZCP Cali, Columbia
Professor and Head, School of Psychiatry Carlos A. León, M.D.
and Clinical Neurosciences Professor Emeritus
University of Western Australia Universidad del Valle
Director, World Health Organization Cali, Columbia
Collaborating Center for Research & Training
in Mental Health Richard Levine, Ph.D.
Perth, Australia Associate Professor
Department of Mathematics and Statistics
A. Albert Joseph, MSc San Diego State University
Biostatistics, SCARF San Diego, California
Chennai, India
Felice Lieh-Mak, M.D.
Martin M. Katz, Ph.D. Emeritus Professor
Past Director, Clinical Research Branch The University of Hong Kong
National Institute of Mental Health Hong Kong
Bethesda, Maryland
Shang Lin, Ph.D.
Fiona Keogh Research Associate and Associate Professor
Researcher Department of Health Studies
Mental Health Commission University of Chicago
Dublin, Ireland Chicago, Illinois

Bertram Krumm K.Y. Mak

Formerly with ISoS Collaborative Study Formerly with ISoS Collaborative Study
Mannheim Field Research Center Hong Kong Field Research Center
Mannheim, Germany Hong Kong
 CONTRIBUTORS ix

Savita Malhotra, M.D. Norman Sartorius, M.D., Ph.D., FRCPsych

Professor of Psychiatry Previous Director, Division of Mental Health
Post Graduate Institute of Medical Education World Health Organization
and Research Professor of Psychiatry
Chandigarh, India University of Geneva, Switzerland
President, World Psychiatric Association
Anthony J. Marsella, Ph.D., D.H.C. Scientific Director, Global Programme against Stigma
Emeritus Professor, Department of Psychology and Discrimination Because of Schizophrenia
University of Hawaii
Honolulu, Hawaii Marianne Schäfer
Formerly with ISoS Collaborative Study
Peter Mason, M.D. Mannheim Field Research Center
Psychiatrist Mannheim, Germany
Formerly with ISoS Collaborative Study
Nottingham Field Research Center Alice Scheurer
Nottingham, United Kingdom Formerly with ISoS Collaborative Study
Honolulu Field Research Center
Morris Meisner, Ph.D. Honolulu, Hawaii
Research Scientist
Nathan Kline Institute for Psychiatric Research Bettina Schwerd
Orangeburg, New York Formerly with ISoS Collaborative Study
Mannheim Field Research Center
Heather Morse Mannheim, Germany
Formerly with ISoS Collaborative Study
Honolulu Field Research Center Yucun Shen, M.D.
Honolulu, Hawaii Academician
The Chinese Academy of Engineering
Sabine Müller Professor and Honorary Director
Formerly with ISoS Collaborative Study Institute of Mental Health, Peking University, China
Mannheim Field Research Center Member; World Health Organization Expert
Mannheim, Germany Advisory Panel on Mental Health
China
Yoshibumi Nakane, M.D.
Professor and Chairman, Department Carole Siegel, Ph.D.
of Neuropsychiatry Director, Statistics and Services Research Division
University School of Medicine Nathan Kline Institute for Psychiatric Research,
Nagasaki, Japan Orangeburg, New York
Fokko J. Nienhuis, Ph.D. Ctirad Skoda, M.D.*
University Medical Center Groningen Former Psychiatrist and Director of ISoS
Department of Psychiatry Collaborative Study
University of Groninge, Prague Field Research Center
Groningen, The Netherlands Prague, Czech Republic
Anne O’Grady Walshe, M.D. Cees J. Slooff, M.D., Ph.D.
Consultant Psychiatrist University Medical Center Groningen
Tallaght Hospital Department of Psychiatry
Dublin, Ireland University of Groningen
Groningen, The Netherlands
Georgi Onchev, M.D., Ph.D.
Senior Lecturer in Psychiatry, Department Edward Suarez, Ph.D.
of Psychiatry Director, Adult Patient Rehabilitation Services
Medical University Hawaii State Hospital
Sofia, Bulgaria Hawaii
S. Rajkumar, M.D. Koichi Takada
Professor Formerly with ISoS Collaborative Study
Mid Western Area Health/University of Newcastle Nagasaki Field Research Center
Australia Nagasaki, Japan
x CONTRIBUTORS

Dei-In Tang, Ph.D. Iris Weber

Research Scientist Formerly with ISoS Collaborative Study
Nathan Kline Institute for Psychiatric Research Mannheim Field Research Center
Orangeburg, New York Mannheim, Germany

R. Thara, M.D., Ph.D. Durk Wiersma, Ph.D.

Director, Schizophrenia Research Foundation University Medical Center Groningen
(SCARF) Department of Psychiatry
Chennai, India University of Groningen
Groningen, The Netherlands
Sergey Tsirkin, M.D.
Research Institute of Clinical Psychiatry M.C. Wong
National Mental Health Center Formerly with ISoS Collaborative Study
Moscow, Russia Hong Kong Field Research Center
Hong Kong
Vijoy K. Varma, M.D.
Clinical Professor of Psychiatry Lyman C. Wynne, M.D., Ph.D.
Indiana University School of Medicine Research Professor, Emeritus, Department
Retired Professor and Head, Department of Psychiatry of Psychiatry
Post Graduate Institute of Medical Education University of Rochester, New York
and Research Rochester, New York
Chandigarh, India
Kazuyasu Yoshitake
Dermot Walsh, M.D. Formerly with ISoS Collaborative Study
Psychiatrist Nagasaki Field Research Center
Health Research Board Nagasaki, Japan
Dublin, Ireland

Joseph A. Wanderling, M.A.

Research Scientist
Nathan Kline Institute for Psychiatric Research
Orangeburg, New York
 Introduction

Since the early 1980s, a body of epidemiological evi- eraged 20 and 15 years, respectively. Over two thirds
dence has taken shape (Huber, Gross, and Schuttler, (68%) of the Vermont cohort were found to have few
1975; Bleuler, 1978; Tsuang, Woolson, and Fleming, or no symptoms; an almost identical proportion (64%)
1979; Ciompi, 1980; McGlashan, 1984; Ogawa et al., of the Chestnut Lodge group was judged to be inca-
1987; Shepherd, Watt, Falloon, and Smeeton, 1989; pacitated or only marginally functioning.
Johnstone, 1991) challenging the early Kraepelinian As such findings illustrate, difficulties arise when
view (Kraepelin, 1893) that the long-term prognosis comparisons are made across studies using different
for schizophrenia was almost uniformly poor. Begin- sampling frames, periods of follow-up, and measures
ning with M. Bleuler’s striking and, at the time, for the complex domains of course and outcome (Har-
skeptically received, report on a cohort of 208 pa- rison and Mason, 1993). The Vermont study, for exam-
tients intensively followed for over 20 years (Bleuler, ple, followed up inpatients selected as good prospects
1978), investigators have repeatedly documented pat- for participation in an aggressive rehabilitation pro-
terns of long-term outcome at odds with the more gram. The Chestnut Lodge Study sampled cases admit-
pessimistic view. Nor are such findings restricted to ted for long-term residential treatment, most of whom
less-developed countries of the world, although the were young, persistently ill “treatment failures.” In
evidence for more favorable outcome there is long- treated prevalence samples drawn from consecutive
standing (Warner, 1985; Kleinman, 1988). Persisting hospital admissions, too, readmissions and cases of
diagnostic ambiguities aside, the European studies in longer illness duration tend to be overrepresented, fur-
the second half of the 20th century as a whole offer ther hedging the generalizability of the findings. Be-
consistent evidence for generally better outcome cause such sampling biases can limit generalizability to
(Angst, 1988). Swiss (Bleuler, 1978; Ciompi, 1985), such an extent, they ought to be given greater visibility
German (Huber et al., 1975), and British studies when reporting outcomes for schizophrenia (Schwartz,
(Shepherd et al., 1989), for example, document a Terkelsen, and Smith, 1992). The ideal situation for
more promising course for at least half of patients fol- tracking course and outcome in such disorders would
lowed over time. be incidence samples, identified in a number of “repre-
The North American record is less clear, owing sentative” settings, followed with minimum attrition
perhaps to substantial variation in both study design and assessed with standardized measures of proven reli-
and cohorts tracked. As early as 1975, researchers ability. Few studies can meet that standard.
there were documenting a wide range of functioning Notwithstanding these methodological caveats,
in subjects assessed 5 years after entry into the study the literature suggests that substantial heterogeneity
(Hawk, Carpenter, and Strauss, 1975). Long-term in course and outcome remains the rule. Observed
follow-up studies since then have compiled a record variation increases when subtypes of schizophrenia
of inconsistency. Compare, for example, the picture are considered (Fenton, 1996) and holds true even in
of former hospital patients in rural Vermont (Harding, prospective studies restricted to first-admission cohorts
Brooks, Ashikaga, Strauss, and Breier, 1987) with that (Ram, Bromet, Eaton, Pato, and Schwartz, 1992). A
of subjects in the Chestnut Lodge study in suburban meta-analysis of follow-up studies in the 20th century
Maryland (McGlashan, 1984). Follow-up periods av- concludes that approximately half (48.5%) of patients

xi
xii I N T R O D U C T I O N

followed between 1955 and 1985 improved significantly, original substudy (except for Prague, which combines
as compared with just over a third (35.4%) of those fol- two), presenting the findings by individual center. A
lowed in the half-century preceding that period concluding chapter highlights findings and considers
(Hegarty, Baldessarini, Tohen, Waternaux, and Oepen, what might be gleaned about the role of culture in re-
1994). More optimistic readings of prognosis have also covery from the evidence at hand.
been voiced when separate domains of competency or A note on the tabulation of data is in order here.
recovery are considered, and the 32-year follow-up study Readers will find three sets of tables at the end of the
by Harding and colleagues (Harding et al., 1987) posited volume, displayed by center:
that a substantial proportion of patients may show re-
• Set A (4 tables) Baseline and Short-Term
covery late in the course of their illness. In the judgment
Follow-Up
of three leading researchers, it may well be time for • Set B (35 tables) Course and Outcome for the
chronicity to give way to the expectation of “slow, uphill Alive Cohort
returns to health” with allowances for “multiple levels of • Set C (6 tables) Deceased Subjects
functioning in housing, occupational and social skills”
(Harding, Zubin, and Strauss, 1992). The appendices contain additional data drawn upon
The International Study of Schizophrenia (ISoS) in reporting findings in both synoptic and center
offers a singular opportunity to test the prospect of chapters. We are in the process of creating an Internet
“slow, uphill” progress in cross-cultural cohorts of great website that will describe the ISoS study, provide the
diversity. The study encompasses a large number of schedules used with accompanying instructions, and
treated incidence cohorts—chiefly from two earlier house the ISoS data in SAS and SPSS formats. The
WHO studies, the Determinants of Outcome of Severe URL will be: [Link]
Mental Disorders, and the Reduction and Assessment of
Psychiatric Disability—assembled from diverse catch- POSTSCRIPT
ment areas, using common case-finding techniques and
This volume has had an unusually troubled publica-
inclusion criteria. To broaden the global representative-
tion history. The completed manuscript was deliv-
ness of the follow-up study, these were supplemented by
ered to our original publisher in the spring of 1999.
opportunistic cohorts from two additional centers, Chen-
For reasons never explained, production stalled and
nai (Madras) and Hong Kong, where circumstances al-
communication shut down, stranding the manuscript
lowed the retrospective identification of broadly compa-
in a kind of limbo. Outside counsel and formal pro-
rable incidence cases. It was possible, too, to include
ceedings were required to recover copyright from the
three prevalence cohorts from the original International
original publisher. In 2006, Oxford University Press
Pilot Study of Schizophrenia, as well as an additional ret-
formally took the book over and brought its produc-
rospective prevalence analysis cohort (Beijing), from
tion to fruition. We are grateful to Marion Osmun of
which information about very long-term outcome may
Oxford for her commitment to expediting the publi-
be gained. These additions not only ensured representa-
cation process and to seeing this long-delayed project
tion from China (the original IPSS center, Taipei, did
through to completion.
not participate in ISoS), but also extended coverage of
A word, too, about lapsed time: In the decade or
the Indian subcontinent to the south as well. In all, suffi-
so since ISoS data collection ended, globalization
cient data for analysis were collected on 1043 individuals,
has extended its reach substantially and the pace of
from 18 study cohorts scattered across 16 field research
change has accelerated everywhere. That said, we
centers. Follow-up times ranged from 12 to 26 years.
have elected not to modify the area profiles with
PLAN OF THE BOOK which each center chapter begins, for the simple rea-
son that the portraits contained there—locked as they
This volume reports the findings of the ISoS, in ag- are in an “ethnographic present”—remain faithful de-
gregate and by individual Field Research Center. The scriptions of the local circumstances that prevailed at
five synoptic chapters address issues of methodology, the time these subjects were interviewed. Updating
overall course and outcome across the centers as a the descriptions without re-examining the subjects
whole, mortality, diagnosis, and prediction of out- would have been misleading. If context matters to the
come. These are followed by 16 chapters, grouped by story of recovery recounted here, these profiles capture
 INTRODUCTION xiii

its dimensions for the long-term course of illness our (Janca et al., 1996; WHO, 2001), researchers are
research teams set out to track and assess. grappling as well with profound conceptual and
By way of bringing the book’s survey into the cur- measurement issues in assessing “quality of life”
rent era, however, we present here a brief summary of in psychiatry (Katschnig et al., 2005).
recent developments in the study of schizophrenia. In-
• After a period of relative neglect, clinical and epi-
demiological research has returned in recent
deed, research into the course and outcome of schizo-
years to document the frequency and severity of
phrenia, along with rigorous inquiry into interventions
co-morbid physical disorders in persons diag-
that can positively affect that trajectory, has made con- nosed with schizophrenia, an association often
siderable progress since the early 1990s when the last missed in research studies where such conditions
of our studies’ data were collected (Jablensky, 2000). are reasons for exclusion. Commonly found con-
Among notable findings and initiatives: ditions include diabetes, hyperlipidaemia, cardio-
vascular disease, and obesity, and there has been
• Recent work has underscored the importance of much debate about the possible contributory role
cognitive impairments in schizophrenia, espe- of antipsychotic medications (Lambert et al., 2003;
cially in the areas of verbal memory, executive Lieberman et al., 2005). Even if their contribu-
functioning, and vigilance. Their effects on adap- tion to early mortality has been eased by the avail-
tive function and long-term course of illness may ability of modern treatments in countries where
be substantial. Important as barriers to function- such statistics are routinely available, these condi-
ing in their own right, such deficits may also mod- tions add to the disabling toll of impairment and
erate the effectiveness of psychosocial interven- suffering (Jeste et al., 1996; Goldman, 1999).
tions (Green, 1996; Velligan et al., 2000) and so • More aggressive, effective, and insistently partici-
may warrant specialized interventions (McGurk patory approaches to reducing the stigma of se-
et al., 2003; Hogarty et al., 2004). vere mental illness have been mounted in an
• Even with access to optimal medications, a host impressive range of settings. The World Psychi-
of disabling contingencies may apply, ranging atric Association’s Open the Doors program doc-
from scarce jobs, to inadequate housing, poor so- uments an array of effective approaches to com-
cial skills, clueless friends, and anxious and un- bating stigma, ranging from organizing of
supportive families. Psychosocial interventions stakeholder groups (people living with schizo-
address such collateral difficulties. Careful stud- phrenia), to staged public events (plays, films,
ies confirm the wisdom of combining psychoso- theater workshops), to targeted outreach to other
cial with psychopharmacological interventions to sectors (police, high schools, judicial system); its
enhance treatment outcomes in schizophrenia coordinators stress that the program’s durability
(Fenton and Schooler, 2000). These synergistic will be essential to effectiveness. Social market-
effects extend to the new atypical medications as ing approaches have been adapted to enlist insti-
well (Rosenheck et al., 1998). Some interventions tutional allies and shape interventions for spe-
are specifically targeted: resurgence of interest in cific audiences (Sartorius and Schulze, 2005;
designing supported employment prospects for Warner, 2005). Other advocates stress the dam-
persons with psychiatric histories, even in rapidly age done by self-stigmatizing in a hostile and un-
globalizing economies with tight labor markets, comprehending culture and place great impor-
attests both to the importance of socially valued tance on protest, education, and direct contact
participation in the work of recovery and to the with first-person representatives (service users or
necessity of non-market approaches to this kind family members) by any anti-stigma campaigns
of integration (Becker and Drake, 2003; Mar- (Corrigan, 2005). Increasing attention is being
waha and Johnson, 2004). Peer support groups, paid, too, to the role of power in stigma and to its
too, are a burgeoning force for both advocacy often structural nature, as when discriminatory
and recovery (Clay, 2005; Sayce, 2000; Davidson laws and practices enforce social exclusion even
et al., 1999), and have vastly expanded their reach in the absence of individuals acting in a prejudi-
through the Internet (Haker et al., 2005; see, for cial manner (Link and Phelan, 2001; Anger-
example, [Link]; [Link]; meyer and Schulze, 2001).
[Link]). Work with families has been • Finally, drawing inspiration from follow-up stud-
shown to have positive effects on relapse preven- ies showing the importance of social and cultural
tion and social functioning (Leff, 2000). Building factors in shaping long-term outcomes of illness, a
on WHO-initiated work in disability assessment steadily mounting number of studies are pursuing
xiv I N T R O D U C T I O N

an “upstream” (or primary causal) role for psy- Harding, C. M., Brooks, G. W., Ashikaga, T., Strauss, J. S.,
chosocial factors in the development of schizo- & Breier, A. (1987), The Vermont longitudinal study
phrenia, likely to be interacting with genetic pre- of persons with severe mental illness. 1. Methodology,
dispositions. Distressed groups, such as minority study samples, and overall status 32 years later. Amer. J.
migrants in inhospitable settings exposing them Psychiatry, 144:718–726.
——— Zubin, J., & Strauss, J. S. (1992), Chronicity in schizo-
to repeated instances of “social defeat,” may
phrenia: Revisited. Brit. J. Psychiatry, 161(Suppl. 18):
be especially at risk (Harrison, 2004; Selten & 27–37.
Cantor-Graae, 2005). Harrison, G. (2004), Course and outcome in schizophrenia.
Towards a new social biology of psychotic disorders. In:
Kim Hopper
Search for the Causes of Schizophrenia, Vol. 5, ed.
Glynn Harrison W.F. Gattaz & H. Hafner. Steinkopff Verlag Darm-
Aleksandar Janca stadt.
Norman Sartorius Harrison, G., & Mason, P. (1993), Schizophrenia: Falling in-
cidence and better outcome? Brit. J. Psychiatry, 163:
535–541.
Hawk, A. B., Carpenter, W. T., & Strauss, J. S. (1975), Diag-
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 Acknowledgments

This book is based on the data and experience ob- The views expressed in this book are the collective
tained in the International Study of Schizophrenia views of an international group of researchers and do
(ISoS), a project sponsored by the World Health Or- not necessarily represent the views or policy of the
ganization, the Laureate Foundation (United States World Health Organization.
of America), and the participating centers. Cross-cultural studies of this magnitude and range
The International Study of Schizophrenia, a tran- present obvious logistical and, for want of a better
scultural investigation coordinated by WHO in 18 cen- term, momentum problems. Standardization and co-
ters in 14 countries, was designed to examine patterns ordination of data collection, transmission, cleaning,
of long-term course and outcome of severe mental dis- and analysis present huge problems whose resolution
orders in different cultures, to develop further methods can be time-consuming and frustrating. Vast dis-
for the study of characteristics of mental disorders and tances and time zones must be spanned, and al-
their course in different settings, and to strengthen the though computer technology represents a substantial
scientific basis for future international multidiscipli- advance, its power is diminished in areas where the
nary research on schizophrenia and other psychiatric equipment itself is not readily available. And always,
disorders seen in a public health perspective. funds must be found, renewed when deadlines lapse,
The chief collaborating investigators in the field and their sources reassured of progress. Finally, politi-
research centers are: Aarhus, Denmark: A. Bertelsen; cal upheavals—in the interval between baseline and
Agra, India: K. C. Dube; Beijing, China: Y. Shen; follow-up, the national boundaries and/or central gov-
Cali, Colombia: C. León; Chandigarh, India: ernments of four of the participating centers were
V. Varma and (since 1994) S. Malhotra; Dublin, Ire- restructured—complicate matters further.
land: D. Walsh; Groningen, The Netherlands: R. Giel Throughout it all, Walter Gulbinat, formerly a se-
and (since 1994) D. Wiersma; Hong Kong: P. W. H. nior scientist at the World Health Organization
Lee; Honolulu, Hawai’i: A. J. Marsella; Chennai (WHO) and personally responsible for on-site trouble-
(Madras), India: R. Thara; Mannheim, Germany: H. shooting for most of the project, and Dr. Eugene
Häfner and (since 1989) W. an der Heiden; Moscow, Laska, Chief of the Statistical Sciences and Epidemi-
Russia: S. J. Tsirkin; Nagasaki, Japan: Y. Nakane; Not- ology Division at the Nathan S. Kline Institute (NKI)
tingham, U.K.: G. Harrison; Prague, Czech Republic: and Director of the WHO Collaborating Center at
C. Skoda; Rochester, NY: L. Wynne; and Sofia, Bul- NKI, provided the steady hands and clear vision
garia: K. Ganev. Coordination of the data collection, needed to see the effort through to completion. The
experimental design, and data analysis were carried final report owes much to the individual directors of
out by the WHO Collaborating Center at the Nathan Field Research Centers. Special mention should be
S. Kline Institute for Psychiatric Research under the made of the long tenure of the late Dr. Ctirad Skoda.
direction of E. Laska. At WHO Headquarters, Geneva, The patience and steadfast support of the Laureate
the study has been coordinated by N. Sartorius (until Foundation (now the Warren Medical Research Cen-
August 1993), by W. Gulbinat (September 1993–April ter, the William K. Warren Foundation, and Laureate
1996), and by A. Janca (since May 1996). Psychiatric Clinic and Hospital within the St. Francis

xvii