For the past 30 years, some psychiatric epidemiologists have held to a
claim that has evolved into a vexing axiom: that people with schizophrenia
appear to have a better outcome in developing countries than in Westernized
developed countries.
It is a belief founded on three cross-cultural studies sponsored by the
World Health Organization: the International Pilot Study of Schizophrenia, the
Determinants of Outcome of Severe Mental Disorder (DosMed), and International
Study of Schizophrenia (ISoS).
This belief has spawned a variety of seductive but largely speculative
explanations about the more tightly knit family and social structures that are
said to exist in developing countries and that may account for better
outcomes.
But a new study in the September 28 advance online Schizophrenia
Bulletin suggests that prognosis in the developing world is far more
complicated, with a variety of outcomes—good and bad—across
several domains of measurement and across, and within, countries in the
developing world.
Study author Alex Cohen, Ph.D., told Psychiatric News that the
report presents a very mixed picture for prognosis in the developing world and
leaves many questions unanswered. But it should prompt a reassessment of the
certainty with which assumptions have been held, as well as the implications
those assumptions have for the development of services, he said.
"The development of services and policy should be based on evidence
and not assumptions about the interactions of social worlds and psychiatric
processes," Cohen said. "In many ways, the review points most of
all to what we don't but need to know.
"But the evidence presented in the review also suggests that lack of
treatment and long duration of untreated psychosis are always associated with
poor clinical status and outcome, and that treatment brings
improvement," Cohen said. "The notion of better outcomes also
deflects attention away from the extensive human rights abuses that are well
documented in much of the world."
Cohen is an assistant professor of social medicine at Harvard Medical
School. His co-authors are Vikram Patel of the London School of Hygiene and
Tropical Medicine; R. Thara of the Schizophrenia Research Foundation in
Chennai, India; and Oye Gureje of the Department of Psychiatry at the
University of Ibadan in Nigeria.
The findings from the WHO studies have prompted some to wonder if—in
the words of medical anthropologist Kim Hopper, Ph.D.—"abundance
cripples" and whether scarcity, and the social cohesion that is
putatively a byproduct of scarcity, helps to produce better outcomes.
But the new report by Cohen and colleagues casts doubt on the
representative nature of samples in those studies (given the probability of
high mortality in countries where psychiatric treatment is relatively poor),
the measures used to determine a good outcome, and even the theoretical
foundations for distinguishing "developed" from"
developing" countries.
"I've never been comfortable with the term 'developing country'
because it is virtually impossible to define," said Cohen, who noted
that in the ISoS study, wealthy Hong Kong was included as a"
developing" site.
"In our study, we have used the terms low- and middle-income
countries and have used World Bank criteria as definitions," he said."
That's not a perfect solution, but one that is consistent. The more
important point is that we should be comparing sites with good outcomes with
sites with poor outcomes and then investigate the factors that account for
these differences."
In their study, Cohen and colleagues reviewed literature and tabulated data
from 23 longitudinal studies of schizophrenia outcomes in 11 low- and
middle-income countries and examined evidence on the following domains:
clinical outcomes and patterns of course; disability and social outcomes,
especially focusing on marital and occupational status; and untreated samples
and duration of untreated psychosis.
The 11 countries are Brazil, Bulgaria, China, Colombia, Ethiopia, India,
Indonesia, Jamaica, Nigeria, South Africa, and Trinidad. The identified
studies were prospective and retrospective, had follow-up periods ranging from
one to 20 years, included prevalent and first-episode cases, and drew samples
from a variety of settings (outpatient clinics, hospitals, and communities).
Twelve of the studies followed 100 or more subjects.
To provide a basis for comparison, the investigators included data from the
following ISoS sites—Bulgaria, China, India (Agra, urban Chandigarh, and
rural Chandigarh), and Colombia—and Nigeria from the DosMed study.
In general, and most strikingly, they found wide variation in outcomes from
study to study and within countries. For instance, clinical outcomes and
patterns of the course of illness were generally good in India, but not nearly
so positive in Brazil, Nigeria, and China.
A 10-year longitudinal study in Madras, India, found that 74 percent of
patients had little or no difficulty in social and occupational domains; in
the Chandigarh, India, site in the ISoS study, 63 percent to 71 percent of
patients had good to excellent social functioning.
In contrast, the study site in rural China found that 68 percent had"
seriously impaired" social functioning; in Nigeria 56.6 percent
had moderate to severe social disability.
But even within India, outcomes varied depending on the measure. For
instance, in one study in rural Karnataka, only 13 percent of patients had
regular employment. In the multisite study, 82 percent were reported working
with no or only some impairment.
Cohen said that apart from refuting the blanket assumption of better
outcomes in developing countries, the findings raise the larger question of
why outcomes vary, not only in low- and middle-income countries, but in
high-income countries as well.
"The short answer is, we have no idea," he said. "People
speculate about variations in tolerance, family support, and social
integration, but there is little direct evidence linking these factors to
outcomes, at least in low- and middle-income countries. And our review
suggests the presence, at times, of social rejection, high levels of stigma,
and breakdowns in family support."
Cohen and colleagues also found the same level of variability across the
developing countries on measures of disability and social outcome, employment,
and marital status as was found with regard to clinical status.
Also revealing was the lack of biomedical treatment and associated duration
of psychosis in the developing countries (see Many Untreated in Developing
Countries).
Schizophrenia Bulletin Editor William Carpenter, M.D., a principal
investigator in the International Pilot Study on Schizophrenia, told
Psychiatric News that as one of those who had touted the line on
better prognosis in developing countries, he believes the new study offers a
fresh perspective.
He said the long-held assumption of better prognosis had generated some
intriguing, if untested, hypotheses. Among the most prominent of these is the
theory put forward by Arthur Kleinman, M.D., of Harvard that schizophrenia
patients fare better in "socio-centric" rather than"
egocentric" cultures: that the high level of independence and
skill required to thrive in a technological, highly individualistic society
causes patients with the cognitive deficits of schizophrenia to languish and
fail.
In contrast (so the theory went), patients in less-demanding cultures would
more easily find a niche, nurtured by the strong family and social ties
commonly said to exist in rural cultures.
But Carpenter concedes that the earlier WHO findings and the subsequent
hypothesis obscured the coarseness of some of the measures used to designate a
good outcome.
For instance, patients in India might be found to be employed, however
marginally, while in Denmark they were invariably found to be unemployed; yet
by itself the finding fails to take into account Denmark's strong social
welfare network, which ensures that disabled patients have lifelong disability
income, while in India patients might be living at subsistence level.
Moreover, the category of "employment" is itself a black box
that might conceal a very low level of functioning.
Carpenter relates an anecdote reported by John Strauss, M.D., Carpenter's
co-investigator in the pilot study. "In Nigeria we found a patient who
was employed tending the family livestock herd," he said. "But
when we asked around, we learned that the job was something normally done by a
10-year-old boy."
In the more searching analysis by Cohen and colleagues, they found a
similar situation. In one Indian study, for instance, two-thirds of women were
rated as having good homemaking functioning.
"However, it is difficult to determine the extent to which functional
abilities were required to perform assigned household tasks (cooking, washing
clothes and utensils, household maintenance, caring for children and others in
the household) because other women in the household generally helped with
these tasks," the authors wrote in their report.
"Not all employment is positive," Cohen told Psychiatric
News. "Too often, it is exploitative or just plain awful. To
demonstrate the value of work, it would be necessary to examine the nature of
employment available to persons with schizophrenia."
Regarding the assumption of more tightly knit family and social structures
in developing countries, Cohen said he believes it may be a"
romanticization" of poorer, rural cultures.
"There is nothing wrong with the hypothesis," he said."
The problem comes when it is accepted as true without testing it. The
hypothesis is rather static, too. It posits family support as a constant, and
this is probably not the case.
"While in Nepal a number of years ago, I was told that Nepali
families would do virtually anything to help a member at the time of his or
her first psychotic episode, but that extraordinary support would weaken and,
at times, break down in the face of chronic psychosis," Cohen said."
I am not saying that families are not supportive—only that the
support is a dynamic process that is influenced by many factors and cannot be
assumed."
"Questioning an Axiom: Better Prognosis for Schizophrenia in
the Developing World?" is posted at<http://schizophreniabulletin.oxfordjournals.org/cgi/content/full/sbm105v1>.▪