In light of the momentum behind the recovery model, it is reasonable to ask whether, in fact, recovery is a reasonable goal. It certainly stands in contrast to the traditional view of schizophrenia as a chronic, possibly deteriorating condition. Not surprisingly, concerns have been raised that the model is little more than old wine in new bottles and that it offers false hopes to consumers and their families.16,22,23
From the perspective of consumers there is no question that recovery is not only possible but that it might be relatively common. First-person accounts published in the scientific literature for more than 25 years (eg, in Schizophrenia Bulletin
), as well as numerous survey papers,24
and public addresses by consumers provide ample, albeit not scientifically controlled, evidence to that effect. Of course, just as one can define recovery in such a stringent way as to make it an impossible goal, it can also be defined so broadly as to make its achievement unimportant. However, even the most optimistic views differentiate recovery from cure and/or a return to normality,14,21
and the consumer literature underscores that the path to recovery is a struggle, often marked by relapses and ongoing adjustments to residual symptoms, functional difficulties, and altered life goals.
Perhaps more important from the perspective of most readers of Schizophrenia Bulletin
, there is now a growing scientific literature demonstrating a more optimistic picture of the course of illness. A full explication of this literature is beyond the scope of this article, and the reader is referred to a recent book by Davidson, Harding, and Spaniol,27
along with other reviews that provide extensive discussions of the literature. Beginning with the Vermont Longitudinal Study,5,28
there are now upwards of 20 contemporary trials of the long-term outcome of schizophrenia.17,29,30
Studies vary in specific criteria, measures, samples, and time frame, but overall 20–70% of people with careful research diagnoses appear to have a good outcome, with substantial reduction of symptoms and good quality of life and role function over extended periods of time. The modal percentage with good outcomes is in the range of 50%.6,31
Improvement varies across domains of functioning (eg, symptoms and role performance), and aside from deficit symptoms there are few reliable predictors of outcome.1,30,32
There is wide variability in course of illness between individuals and geographic regions (eg, outcome tends to be somewhat better in less developed regions of the world).33
Both empirical data and anecdotal reports suggest that much of the pernicious effect of schizophrenia is manifested early in the course of illness, followed by a plateau, and then gradual improvement for many patients.24,30
Two recent examples of long-term outcomes are illustrative. The International Study of Schizophrenia31
conducted 15- and 25-year follow-ups of subjects originally recruited for earlier international trials. In this study 48.1% of patients with schizophrenia were rated as recovered (by M. Bleuler's criteria: employed and resumed former role functioning, not seen as mentally ill by family, and no overt psychotic symptoms); 37.8% were rated recovered using a more stringent criterion (Bleuler criteria plus Global Assessment of Functioning > 60). The Chicago Follow-up Study6
has followed a cohort of patients for 15 years, conducting assessments at 5 occasions. Based on their recovery criteria (discussed above), 41% of subjects with schizophrenia and 55% of those with schizophreniform disorder were in recovery on at least 1 follow-up. However, relatively few patients were in continuous recovery: most had episodic courses. Of note, 40% of each diagnostic group who were in recovery at the 15-year follow-up were not taking antipsychotics. These data suggest some patients who do well may not need to take maintenance medications. However, this is a complex issue. Some of these patients may have done better if they were maintained on medication. There are also data to suggest that duration of untreated psychosis is a strong predictor of subsequent course of illness,31
and a growing literature on first-episode cases suggest that early treatment can play a substantial role in improving outcomes.34
This is an important issue that warrants further study, as it has major implications for treatment recommendations provided to consumers and their families.
The long-term outcome data can be interpreted as a glass half full or half empty. There is little evidence that a large proportion of patients have a benign course of illness with substantial symptom remission and return of function after a brief period of acute dysfunction. The majority of people with schizophrenia have a long period of intermittent or continuous disability. Conversely, it appears as if many, if not most, people with the illness have periods of relatively good functioning, which increase in frequency and duration as they pass through middle age. At least half of the population can be expected to achieve and maintain scientific criteria for recovery for extended periods of time during their lives. Moreover, the empirical data may actually underestimate the actual prevalence of good outcomes. It is widely assumed that there is a population of good outcome patients who are not treated in public mental health systems and therefore are less likely to be recruited into studies than patients who are doing poorly.
No systematic data are available on rates of recovery as defined from the consumer perspective (eg, SAMHSA or the New Freedom Commission definitions). Anecdotal data and commentary by the many impressive consumer spokespersons for the recovery model are informative, but it is difficult to extrapolate from these sources of information. It is clear that the professional and scientific communities have not sufficiently appreciated the subjective experiences of people with schizophrenia and their ability to recover from the debilitating effects of the illness. Similarly, there has not always been adequate consideration of the value of engaging the consumer as a partner with decision-making authority in the treatment process. Conversely, it is not clear if the experiences of consumer-professionals are characteristic of the broader population of people with schizophrenia or if they represent a distinct good-outcome subgroup.
Controlled trials are required to understand factors that contribute to consumer-defined recovery and to determine its course and prevalence. An essential step to accomplish that goal is development of psychometrically sound measures of the subjective dimensions of recovery, such as empowerment and hope. A number of measures have been developed to date,35
but none have yet been shown to have adequate psychometric characteristics. One major problem in developing recovery scales concerns the content to be included and scope. Instruments designed to assess change or stage of recovery in more disabled persons need to address relatively basic aspects of functioning (eg, ability to perform activities of daily living [ADLs]). These instruments may not have adequate ceiling to effectively assess persons who are functioning very well, such as the professionals who self-identify as consumers. Conversely, an instrument designed to have adequate ceiling for these exceptional individuals may not have sufficient floor to capture the functioning of more disabled consumers. The assessment of subjective experiences and attitudes of people with schizophrenia, such as quality of life or satisfaction with life, has proven to be quite problematic.36
There are consistent differences in ratings of objective and subjective quality of life, as well as between ratings provided by consumers and other informants. Assessing subjective experiences is especially problematic in persons with significant cognitive impairment. While some consumers would argue that self-appraisal is always valid, that viewpoint is difficult to reconcile with observed reality distortion and impaired reasoning. Given that recovery is (at least partially) a subjective experience and is self-defined, some determination will need to be made of when and to what extent a person with schizophrenia can provide an accurate and reliable self-appraisal.