ReviewFunctional impairment in people with schizophrenia: Focus on employability and eligibility for disability compensation
Introduction
Over the past three years, the National Institute of Mental Health (NIMH) and the Social Security Administration (SSA) have discussed how to improve SSA's disability determination process for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSA first approached the National Institutes of Health (NIH) in August, 2007, to invite NIH's input in identifying diagnostic science that might let SSA improve their disability determination process. In particular, SSA has a new “Compassionate Allowances” process (http://www.ssa.gov/compassionateallowances/), under which SSI/SSDI applicants whose disability can be definitely established can be awarded benefits rapidly. The current list of Compassionate Allowances Conditions is available at http://www.ssa.gov/compassionateallowances/newconditions.htm.
SSA initially indicated that it was hoping to identify valid “tests” – e.g., genetic tests or diagnostic imaging – that would allow rapid and accurate identification of disorders that plausibly confer a priori eligibility for disability. Such diagnostic technology does not currently exist for major mental disorders. However, SSA indicated an interest in reviewing other types of scientific evidence that might help improve disability determinations. For instance, many mental disorders, including schizophrenia, which represents around 8% of the adult recipients of SSI/SSDI, are associated with significant cognitive impairment, across multiple domains of functioning. Because cognitive impairment often results in functional disability, SSA expressed interest in identifying appropriately validated benchmarks of cognitive impairment, with the possibility that standardized measures of cognitive impairment could be part of a Compassionate Allowance determination for schizophrenia and other relevant mental and physical conditions.
In the particular case of schizophrenia, the disorder itself may warrant being included in SSA's “Compassionate Allowances” process, provided that strong and reliable links can be established between disease related cognitive impairment and functional disability. That is, in this case documentation of a valid diagnosis of schizophrenia may be sufficient for SSA to award disability benefits. In this context, NIMH commissioned the authors – all internationally known experts in schizophrenia and psychiatric disability – to prepare two scientific review papers: the current paper, which examines the empirical association between schizophrenia and disability; and a second, related paper that examines the nature of schizophrenia diagnosis, including the reliability and validity of current diagnostic criteria; what data/information, methods, and expertise are needed for valid diagnosis; and the stability of the diagnosis over time. These papers were intended to help SSA determine how schizophrenia might warrant being included in SSA's Compassionate Allowances program.
Schizophrenia as currently defined is an outgrowth of the original Kraepelinian concept of “Dementia Praecox” (Kraepelin, 1919). This nosological entity was defined as a condition with features of dementia (notable cognitive and functional impairments), an early age of onset compared to Alzheimer's dementia, and a variety of associated features. These features include changes in emotional functioning, reduced drive and motivation, verbal communication abnormalities, unusual behavior, delusional thinking, and perceptual abnormalities experienced as hallucinations. Thus, from the first conceptualization of schizophrenia, the illness has been seen to be persistent, heterogenous, and associated with chronicity, and disability. The current definition of schizophrenia is actually quite similar (American Psychiatric Association, 1980).
This paper supports the argument that schizophrenia is a condition in which disability is an intrinsic part of the illness. Thus, it is not surprising that the majority of people with schizophrenia are receiving some disability compensation (Rosenheck et al., 2006). Further, formal or informal disability-related financial support is often provided soon after the diagnosis of schizophrenia: in a large sample of people recently diagnosed with schizophrenia, 80% were found to be either receiving disability compensation or to be completely dependent on a relative for financial support within 18 months of their initial contact (Ho et al., 1997).
In our companion paper we demonstrate that the current diagnostic criteria for schizophrenia can be applied with adequate validity. In this paper we focus on the disability associated with validly diagnosed schizophrenia.
In the United States, the principal sources of public disability insurance are the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs. Eligibility for SSDI and SSI is governed by regulations, the most relevant of which for this paper is SSA's Listing of Impairments (shared by SSDI and SSI). For all mental disorders, disability claimants must meet specific criteria relating to the presence of specific symptoms, to support a medical cause of disability (“A” disability criteria). Claimants must also meet specific criteria relating to impairment in at least two out of four domains of functioning (“B” disability criteria). For schizophrenia, claimants may meet an additional set of criteria relating to chronic disorder-related impairment (“C” disability criteria), instead of or in addition to the “B” disability criteria.
Table 1 lists all three sets of disability criteria.
In the next sections, we summarize evidence regarding the prevalence of multiple domains of impairments in individuals diagnosed with schizophrenia. There are several elements of outcome in schizophrenia that are central to the issues of Social Security disability. They include presence and severity of disability, the prevalence of incomplete response of psychotic symptoms, the severity of cognitive impairments, the presence of persistent negative symptoms, and occurrence of symptomatic relapse in people who have been stabilized. Disability, impaired cognition, and negative symptoms are not responsive to current treatments (Harvey and Bellack, 2009) and are central features of the illness (Heinrichs and Zakzanis, 1998). There are substantial data to suggest that cognition and negative symptoms are the primary causes of disability in everyday activities (Bowie et al., 2008, Bowie et al., 2010, Leifker et al., 2009).
Section snippets
Strategies for the review of data
This review is based on the directions established at a meeting of experts convened by the SSA and NIH in the summer of 2009. Following that meeting, a smaller task force was constituted to develop the content for two white papers and a series of topics were selected for literature searching. This literature search was not designed to be exhaustive, because the focus of the review is limited to literature relevant to the SSA guidelines for disability associated with psychosis.
After the
Natural history of SSDI/SSI adjudication
As part of developing this paper, we obtained data on the “natural history” of SSDI/SSI applicants with schizophrenia, particularly regarding how their applications have been adjudicated. The SSA provided such data from their Disability Research Files, for SSDI/SSI applicants who applied within a diagnosis category that SSA calls “Schizophrenia/Paranoid Functional Disorders”. SSA also provided parallel data for SSDI/SSI applicants overall, across all diagnoses. Data are for applicant cohorts
Schizophrenia and everyday functioning
Now that we have demonstrated that almost all applicants with schizophrenia who persist across multiple appeals eventually are awarded a disability, we now examine the evidence that this award has an empirical basis and should serve as the basis for a compassionate allowances. The majority of people with schizophrenia do not attain “normal” milestones in social functioning, productivity, residence, and self-care. Further, people with schizophrenia typically underperform compared to expectations
Persistent symptoms despite treatment
While the vast majority of people with schizophrenia manifest a clinical response, including remission of symptoms, at the time of their first treatment with antipsychotic medications (Robinson et al., 2004), non-response develops over time. In longitudinal studies, the rate of clinical response drops from approximately 90% to 65% across the first two relapses (Lieberman et al., 1996). The rate of minimal response of psychotic symptoms to treatment appears to be approximately 30% (Kane et al.,
Discussion
There are several conclusions from the data reviewed in this paper. Disability in multiple functional domains is detected in nearly every patient with schizophrenia. Clinical remission is rare and unstable, with most patients experiencing regular relapse even with adherence to oral or long-acting injectable medications. Symptomatic remissions do not predict functional recovery, and functional deficits are associated very poor occupational and residential outcomes. Reductions in motivation and
Role of funding source
This research was funded by the National Institute of Mental Health, who provided no input into the reviews conducted and presentation of these data. The views expressed in this article do not necessarily represent the views of the National Institute of Mental Health, the National Institutes of Health, the Department of Health and Human Services, or the United States government. This was the result of a committee effort including other individuals not directly involved as authors, including
Contributors
All authors contributed equally to this review paper, through a series of conference calls and multiple revisions of this paper.
Conflict of interest
In the past 12 months, the authors have the following activities to disclose: Dr. Harvey has received consulting fees for Abbott Labs, Boeheringer Engelheim, Genentech, Johnson and Johnson, Pharma Neuroboost, Roche Pharma, Shire Pharma, Sunovion Pharma, and Takeda Pharma. Dr. Carpenter has received consulting fees from Bristol Myers Squibb, Eli Lilly and Company, Lundbeck Pharma, and Merck and Company. Dr. Green has been a Consultant to Abbott Laboratories, Cypress Bioscience, Lundbeck, Otsuka,
Acknowledgements
A meeting convened by the NIMH served as the basis for this paper. All individuals who attended that meeting contributed to the discussions, but the writing of the paper was completed by the current authors. The authors would like to thank Feea Leifker for her literature searching for this project.
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