Data Refute Belief About Schizophrenia Outcomes

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.

Does Abundance Cripple?

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.”

Outcomes in 11 Countries Studied

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 Original article: Many Untreated in Developing Countries).

Egocentric vs. Sociocentric Societies

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>.▪