Introduction: A Brief History
This chapter focuses on our understanding of the long-term course and outcomes of individuals with psychosis who were followed for at least 10 years after study enrollment. Prior to the mid-1980s, the typical method of case identification was through clinically diagnosed consecutive admissions to a single treatment facility.3 There were also a handful of notable multisite studies, including the International Pilot Study of Schizophrenia12 headed by the WHO and the Collaborative Study of the Psychobiology of Depression funded by National Institute of Mental Health (NIMH).13 However, since illness onset had begun years earlier in the vast majority of patients in these studies, the design was not optimal for evaluating “change” in clinical or functioning domains. As Cohen and Cohen demonstrated,14 consecutive admissions (i.e., prevalent samples) are biased toward poor outcomes. Moreover, comparisons of the findings among these studies are hampered by variations in their ratios of first to multiple admission cases;8 the mix of patients with schizophrenia, schizoaffective disorder, affective psychoses, and other nonaffective psychotic conditions;1 and the stage of the illness when the diagnosis was made.15
In spite of obvious shortcomings, there are many important findings from these studies that have stood the test of time. One example is the poorer outcomes of younger males with schizophrenia compared to older onset cases and to women. Other risk factors that were later confirmed include family history of schizophrenia, lower intelligence and education, co-occurring substance abuse, insidious onset, delay in treatment seeking, and nonadherence to treatment. Perhaps most striking of all is confirmation of the proportion of cases fitting each of the eight course types derived from the type of onset (acute vs. insidious), interim course (fluctuating vs. steady), and outcome (good vs. poor), first described by Bleueler16 and Ciompi.17 Thus, before the era of modern psychotropic medicines and deinstitutionalization, and before studies were designed with better sampling and diagnostic assessment methods, 40% of patients with schizophrenia were judged as having good outcome, thus challenging the belief that schizophrenia is a degenerative disease, as noted in Chapter 18. Remarkably, three recent studies of first-episode or recent onset psychosis conducted in different cultural settings found very similar results.18-20
Launched in the early 1980s, the DOSMED study represented the first large-scale paradigm shift in the design of psychopathology outcome stud- ies.10 Rather than consecutive admissions, DOSMED selected incident, or first-contact, cases. Rather than recruit from single facilities, typically hospitals, DOSMED searched for first-contact individuals in mental health programs, jails, and primary care settings, and among those seeking help from nontraditional providers, like natural healers. Rather than rely on a clinical diagnosis, DOSMED recruited individuals with psychosis and administered a systematic and reproducible assessment procedure to diagnose study cases, thereby reducing misclassification. In these respects, DOSMED was a methodological and conceptual game- changer. O ther studies so on followed D OSMED’s lead, elaborating on the design21 and adding new measurement domains.22-24
A goal of studies designed in the twenty-first century has been to assemble cohorts of people either at the earliest possible stage of psychosis or in the prodromal stage, before frank psychosis has set in.25 As described in Chapter 12, these studies often had a dual goal of primary prevention along with early case identification of psychosis.26-28 Surprisingly, the rates of good outcome and the risk factors associated with improvement were similar to those reported during the pre-DOSMED era. For example, rates of good outcome after 10 years of follow-up continued to be in the order of 40-45% in developed counties.29 When outcome was defined more rigorously, however, the percent with favorable outcomes decreased considerably. In the most comprehensive review to date, Jaaskelainen and colleagues2 refined the definition of recovery to include good clinical and social outcome, with one of these areas being sustained for at least 2 years. Among the nineteen first-episode schizophrenia studies with 10 or more years of follow-up, the range of recovery according to this definition was 0-37%, and the median was only 16%.
We note that in the Suffolk County30 and Chicago31 samples, patients with schizophrenia diagnoses had worse outcomes than those with psychotic mood disorders. For example, at the 10-year follow-up of the Suffolk County cohort, composed of first admissions with psychosis recruited from each of the inpatient facilities across the county, 14.2% of participants with schizophrenia versus 59.1% having other diagnoses had periods of remission as defined by Andreasen et al.32 Moreover, while one-third of the cohort had global assessment of functioning (GAF) scores higher than 60, mirroring pre-DOSMED outcome rates, only 11.0% with schizophrenia compared to 51.3% with other disorders were in this range of GAF scores. In the 10-year follow-up of the AESOP cohort, Morgan and colleagues also reported significantly lower rates of recovery and remission in those with a nonaffective compared to an affective diagnosis.20 Again, it is important to emphasize that the difference in outcome by diagnosis had been duly noted in pre-DOSMED studies.33
Clinicians’ definitions of recovery are not equivalent to subjective feelings of well-being and life satisfaction. Hence, diagnostic differences in clinician-defined recovery may not necessarily correspond to comparisons using subjective evaluations.34 The Suffolk County data illustrate this well. Although our clinician ratings of outcome showed significantly poorer
Findings from Long-Term Outcome Studies
Figure 1.1 Ratings of life satisfaction by Suffolk County participants with schizophrenia/schizoaffective disorder (N = 117) and with other psychoses (N = 180).
functioning among participants with schizophrenia compared other psychoses,30 we found little difference in life satisfaction measured with the Quality of Life Scale.35 As shown in Figure 1.1, minor (although statistically significant) diagnostic differences were evident in the early phases of the follow-up, but by the 10-year mark, the two diagnostic groups basically converged (higher scores = better).