We’re not given choices over our suffering in life, but if I was given the option over where I would want be if I had to suffer from a mental illness, let’s just say that Kiribati would not be choice one. I’d rule out Chad, Myanmar, Eritrea, Bhutan–any country which people gently refer to as ‘impoverished,’ or ‘developing,’ or–a bit less tactfully–‘underdeveloped.’ I’d rather be sick in a country that got right down to it and did what it took to be ‘developed.’
As it turns out, my rather prejudiced preference for wealthier countries with better access to newer medications might not serve me quite so well.
Way back in 1968 the World Health Organization (WHO) began a comparison study of 1202 schizophrenics in 9 “developed” and “developing” countries (Columbia, Czechoslovakia, Denmark, India, Nigeria, China, USSR, the UK, and the US), which it called The International Pilot Study of Schizophrenia (IPSS). If you clicked on that last link, published in 1973, you can see what a complex project it was, and how long it took just to get boots on the ground, subjects lined up, and everything ready to go. The researchers worked hard to utilize specific criteria to assess outcome, such as time spent in a psychotic episode, degree of social impairment, and pattern of course. Overall outcome was rated on a 5-point scale.
[It is noteworthy, though, when it came time for assuring standardization of assessment, that mental disorders had only recently been added to the WHO’s diagnostic textbook, the International Classification of Diseases, and were not well-standardized, and the Americanized mental health version of the ICD, the Diagnostic and Statistical Manual of Mental Disorders (DSM)–3rd edition, known for its inclusion of “explicit diagnostic criteria,” wouldn’t be published until 1980.]
By 1975 researchers had their initial two-year data, which was fairly shocking, but they continued along to complete what had always been intended to be a 5-year study. And by then there was no doubt.
Published as The International Pilot Study of Schizophrenia: five-year follow-up findings, researchers revealed that those living in developing countries, with patients in Columbia, Indian and Nigeria doing particularly well, “had a considerably better course and outcome than (patients) in developed countries. This remained true whether clinical outcomes, social outcomes, or a combination of the two was considered.” Nigeria and Denmark represented the extremes. At the 5-year mark, 57% of patients in Nigeria had the highest possible scores, while only 6% in did in Denmark. Similarly, 31% of patients in Denmark had the lowest possible scores–while only 5% of Nigerian patients scored so poorly.
They found that in India and Nigera, two-thirds of their subjects were asymptomatic at the five-year evaluation.
The researchers were flabbergasted. They were so surprised, in fact, that, when asked to explain their findings, they came up with. . .nothing. Really–they couldn’t come up with statistically valid reasons for the differences in outcome.
So it was back to Columbia, Nigeria, Denmark. . .all the same places, swapping Ireland for China and throwing in Japan for good luck. This second study, called the Determinants of Outcome of Severe Mental Disorders (DOSMeD), analyzed 1379 first-episode patients. Only 10% had been prescribed antipsychotics before the research began. Patients and those close to them were given a baseline interview, and then followed up after one and two years. [15 years later they were tracked down and evaluated again in what would become the WHO’s third major cross-cultural schizophrenia study, the International Study of Schizophrenia (ISoS).]
This time researchers were less shocked when their data clearly indicated a better outcome for those in developing countries. Although variations on a theme, the new details that emerged were compelling anyway. For example, 38% of patients from developing countries were in full remission more than 3/4 of the time, as opposed to 22% in developed countries; only 16% in the former were on antipsychotic medication vs. 61% in the latter, and while 55% of those from developing countries had never been hospitalized, that was true for only a paltry 8% from the developed countries.
Additionally, at a two-year follow-up, the percentage of patients in full remission (remember: this is schizophrenia we’re talking about) after a single episode ranged from 3% in the US–to 56% in Nigeria.
Questions remained, both design-related (there was some concern about standardization of outcome measures) and, once again, cause-related. So the WHO developed a third study, which, it decided, would be definitive.
The story behind the study, the methods and the findings are published not in a journal, but in a book–more of a tome, really–entitled (take a breath here, the title goes on for lines), Recovery From Schizophrenia: An International Perspective: A Report from the WHO Collaborative Project (don’t lose hope–we’re about there), The International Study of Schizophrenia.
In it the authors clarify how they view their role vis-a-vis the other studies:
- The IPSS demonstrated, among a number of things, that it was possible to do large-scale international studies in “psychiatric epidemiology” and that “respectable proportions of the initial cohorts” could be run down and assessed later.
- The DOSMeD offered a different perspective by choosing to assess subjects as close as they could get to their first experience with mental health treatment. It also served to reinforce the IPSS’s findings which were the subject of much dispute–yet again, life for schizophrenics just turned out better in the developing countries than it did places like the US, the UK, or Denmark.
- The ISoS seemed like ‘take three,’ so researchers had to establish goals that justified the effort, and what they had on their side was both the perspective of time and new diagnostic tools. Reasons for the study, they assert, are to:
- Describe the long-term (15-26 years, starting from the other studies) progress of schizophrenia in a multinational group of subjects;
- Find out if what the original studies revealed about the short-term course of schizophrenia is important in predicting the long-term course of the illness; and, of course
- Finally figure out what “contextual variables” could possibly account for the discrepant findings between developing and developed countries–if, they write, such findings are indeed borne out at all.
So starting in the early 1990s, the ISoS researchers worked to trace down both the original IPSS subjects (a good 26 years after initial contact; and, proving that persistence pays off, they located over 90% of the original 1202 patients) and the original DOSMeD patients (this time a ‘mere’ 12-13 years after the initial evaluations). They also supplemented with some cohorts from Madras and Hong Kong, to “broaden the global representativeness” of the follow-up study.
Additionally, some adjustments were made in terms of research techniques. Just one case in point, the IPSS and the DOSMeD studies were done before there was such widespread standardization of diagnostic criteria as currently existed–remember the International Classification of Diseases? Well, in 1993 came the 10th edition, and all agreed that the WHO’s ICD-10 served as the “standard diagnostic tool for epidemiology, health management and clinical purposes,” bringing with it a whole new world of diagnostic standardization in health. For ISoS, all original diagnoses and notes were converted to ICD-10 diagnoses, providing more standardization than had had ever existed in the project.
So. . .having tracked down over a thousand subjects from the two original studies, and having added hundreds more, researchers went about evaluating positive and negative symptoms of schizophrenia, degree of psychological impairment, employment records, substance abuse history–pretty much what had been evaluated before, come to think of it.
And, really, by now, if you don’t know what the researchers found, it’s because, most likely, you–along with many other people–simply don’t want to believe it (or you haven’t been paying attention and I don’t blame you one whit).
But the third time was a charm in terms of consistency in findings. An off-shoot study, published before all the data were in, found that “the percentage of cases with full remission after a single episode ranged between 3% in the USA and 54% in India. . . . A substantial body of evidence shows a more benign course and better outcome in developing countries.”
And, finally, when the ISoS data was collected and processed, the results were clear: “Ibadan [Nigeria] patients clearly had the best course and outcome: . . Agra [India] patients had the next best course and outcome for most of the factors considered, including overall outcome. Aarhus [Denmark] patients had the worst course and outcome. . .”
“For all variables considered, the schizophrenic patients Ibadan [Nigeria], Agra [India], and Cali [Columbia] (all centers in developing countries) tended to have a better outcome on average than the schizophrenic patients in the other six centers. Furthermore, it was shown that no single variable and no combination of a few “key” variables could explain a large proportion of the variation of any of the course and outcome measures in schizophrenia; in other words, no characteristics of the patient, of the environment, or of the initial manifestations of the disorder considered in isolation would be an effective predictor of the subsequent course and outcome of the illness.”
So. . . here we are. Looking like, for all the advances in medicine, for all the access to hospital care, for all the research that occurs here. . .it seems that schizophrenic patients in the ‘developed’ world do–significantly–more poorly than those in countries that can lack access to basic mental health care. Despite its tri-fold replication (not to mention break-off studies that supported the findings), it’s still tempting to try to dismiss the results.
But researchers around the world have failed to bring down these studies. To the contrary, these three studies by the World Health Organization have been referred to as “arguably the greatest achievements in psychiatric epidemiology”–and their results deemed “the single most important” finding in cross-cultural psychiatry.
So you may be wondering–how in the world is it possible that a schizophrenic in Cali has a significantly better prognosis than one in Chicago, IL?
A lot of people have some thoughts on that–pretty good ones–just hang in there.