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Treatment Of People With Mental Illness: A Decade-Long PerspectivePROLOGUE: In recent years mental health professionals and their leadership have sounded the call that the mental health system was in crisis. Payment levels to providers were decreasing. Access to care was eroding. In September 2003 Paul Appelbaum, former president of the American Psychiatric Association, wrote in Health Affairs of the "slow starvation of the mental health system" and the corresponding "steady attrition of available services and a corresponding diminution in access for people needing care." He claimed: "Unless steps are taken to remedy the current disarray, we are likely to witness the slow implosion of mental health services in many parts of the United States." However, trend data over the past decade paint a picture that is not all negative. Authors David Mechanic and Scott Bilder report here that access to specialty care has actually increased for people with the most serious mental illnesses. However, between 1997 and 2001 access to mental health care diminished for a wide swath of the population with other mental illnesses beyond those deemed the most severe. The authors write: "These decreases in the aggregate may contribute to the perception that services are less available." Mechanic is the René Dubos University Professor of Behavioral Sciences at Rutgers University and directs its Institute for Health, Health Care Policy, and Aging Research. A leading sociologist in health care, Mechanic has written or edited twenty-four books and more than 400 research articles, chapters, and publications on such topics as managed behavioral health care, health reform, social determinants of health, insurance parity for mental health, HIV/AIDS, long-term care policy, and rationing. This marks his twenty-fifth article in Health Affairs; his first was published twenty-two years ago on "disease, mortality, and the promotion of health." Bilder is a research analyst and statistical programmer at the Rutgers institute. His research interests include mental illness, disability, and employment; access to and usage of care among people with serious mental illness; and applications of life data (survival) analysis methods. He holds a masters degree from Rutgers and is working toward a doctorate there.
Many believe that managed behavioral health care has been associated with reduced access to care. Data from a variety of sources suggest that access has increased, although patterns of care and locations of treatment have changed. Data from Healthcare for Communities, a nationally representative community survey, show that access to care has not decreased for people with the most serious conditions who were more likely to receive specialty mental health care after 2000. Further, once people enter specialty care, the number of visits appears unrelated to need. The data highlight the urgent need for a greater focus on the quality of care and patient outcomes.
There is much disquiet in the mental health community. The Presidents New Freedom Commission on Mental Health reported that the "mental health delivery system is fragmented and in disarray."1 Amid federal and state budget deficits, the Medicaid programthe single most important program for people with serious mental illness, which covers one-fifth of all mental health care spendingis a target for reductions.2 The Kaiser Commission on Medicaid and the Uninsured surveyed Medicaid officials in the states and found that in fiscal years 20022004 most states had reduced or restricted eligibility, reduced benefits, increased copayments, controlled drug costs in various ways, and reduced or frozen payments to providers, or were planning to do so.3 Services for the treatment of mental illness are often the first to be reduced and the last to be extended during expansions. Those who have spent time with mental health provider groups during the past decade have heard little other than gloom and doom associated with the growth of managed behavioral health care (MBHC). Characteristic of such views is the opinion of Paul Appelbaum, who recently completed his term as president of the American Psychiatric Association: Over a little more than a decade, I have witnessed the progressive and systematic defunding of psychiatric services in Massachusetts anddespite some regional variationin the United States as a whole...With in-patient units and outpatient clinics driven by the inexorable economics of the situation to downsize or close, people in need of treatment are finding it more difficult, if not impossible, to get care. The situation is compounded by the flight of private practitioners from managed care networks...and by the continuing retreat of the states from their historical role as providers of last resort for psychiatric care.4 Providers of psychiatric care have much to complain about, having experienced greatly reduced reimbursement, loss of autonomy characteristic of fee-for-service practice, substitution of other mental health professionals for psychiatrists, and continuing reduction of inpatient lengths-of-stay during the past decade. Appelbaum writes from the perspective of Massachusetts, one of the most highly resourced and expensive markets in the country, which has been forced by private and public payers to consolidate over the past decade.5 Nevertheless, if we are to properly assess how best to meet mental health needs in the future under realistic constraints, we need a better understanding of the current state of treatment.
Any fair examination of mental health treatment during the past decade must conclude that treatment is more accessible now than before. Much remains to be done, but states have been giving more attention than ten years ago to housing, case management and assertive community treatment, and even psychosocial rehabilitation and supported employment.6 Analysis of visit data from the National Ambulatory Medical Care Survey (NAMCS) suggests that the rate of treatment for depression increased more than threefold from 1987 to 1997.7 Seventy-nine percent of those diagnosed with depression received medications; 58 percent received selective serotonin reuptake inhibitors (SSRIs), a newer generation of antidepressants. Less psychotherapy was provided in 1997 than in 1987 (60 percent of visits, compared with 71 percent), but more visits included both medication and psychotherapy in 1997. Analyses by Sherry Glied and Alison Evans Cuellar of the 1987 and 1998 National Medical Expenditure Survey (NMES) noted a 60 percent increase in children with a treated disorder.8 While 9 percent of treated children with a disorder were covered by Medicaid in the earlier period, 19 percent had such coverage in the late 1990s. Child visits surveyed in NAMCS that resulted in a mental health diagnosis increased markedly between the mid-1980s and the late 1990s, from 2.6 percent to 7.7 percent. Such visits in which a drug was prescribed increased fourfold. There is concern that children may be inappropriately medicated, but it is clear that childrens mental health problems are receiving more attention than in earlier periods. The National Institute of Mental Health (NIMH), and more recently the Center for Mental Health Services (CMHS), has surveyed episodes of care in mental health organizations since 1955, when there were 1.7 million such episodes. Episodes increased impressively between 1992 and 2000, from nine million to thirteen million.9 Similarly, numbers of mental health providers have risen dramatically. Although the supply of traditional providers such as psychiatrists and psychiatric nurses has increased only modestly, there have been larger increases in psychology and social work and very large increases in counseling and psychosocial rehabilitation.10 Patient care full-time-equivalent (FTE) staff in mental health organizations increased from 347,000 in 1986 to 532,000 in 1998.11 MBHC has driven down inpatient lengths-of-stay. Initiated in the private sector, such management has now extended to Medicaid and other public programs. The influence of managed care can be seen by looking at the Xerox Corporation before and after utilization review for behavioral health. In 1987 average length-of-stay per inpatient admission of Xerox employees was 33.7 days. Utilization review reduced it to 9.9 days by 1994about the average for that year for both nonprofit general and public hospitals.12 Length-of-stay has continued to fall and in 2000 varied from 6.7 days to 7.7 days, depending on the type of hospital.13 Despite these changes, many people who need treatment still do not receive it, and most treatment fails to meet reasonable evidence-based standards of care. Results from the Schizophrenia Patient Outcomes Research Team (PORT) show that while medication treatment for acute episodes is now routine, dosage is often outside the appropriate range, and other needed evidence-based care is usually lacking, particularly family education and support and vocational rehabilitation.14 Moreover, most patients with schizophrenia did not receive anti-Parkinson medication for side effects of antipsychotics, and those who were depressed did not receive antidepressants. The second wave of the National Comorbidity Survey carried out in 20012002 found that while 57 percent of people with twelve-month major depression received some treatment, only 30 percent received care from the specialty mental health sector, which was more likely to provide adequate care than primary care physicians. The authors estimate overall that only 22 percent of people in the general population with major depression received minimally adequate care.15 Fifty-five percent of patients treated in the specialty sector received minimally adequate care.
One way of assessing whether mental health care has been on a downward spiral during the past decade as some suggest is to examine patterns of treatment for the same or comparable people with mental illness over two periods of time. The Healthcare for Communities survey, a nationally representative sample drawn from the household component of the Community Tracking Survey (CTS), fielded first from September 1997 to December 1998 (HCC1) and again from April 2000 to November 2001 (HCC2), provides an opportunity to examine a period of time when mental health services faced constraints. The HCC1 sample, which has been described elsewhere, includes 9,585 people representing 64 percent of those selected from the CTS for the sampling frame.16 The HCC2 data provide information on a pair of overlapping subsamples: a follow-up sample from HCC1 and a new sample drawn from the second wave of the CTS. Using these surveys, we constructed a longitudinal sample of 6,659 people who completed both interviews. Twenty-three cases were excluded because of inconsistency in identifiers that make accurate linkage impossible. The longitudinal data were weighted to provide national estimates, to adjust for nonresponse and for the probability of selection at multiple sampling points. SUDAAN software was used when appropriate to provide tests of significance based on appropriate standard errors. All differences reported as significant in the text were tested at p < .05. Because some respondents changed serious mental illness (SMI) status between survey waves, we could not test for significant differences when the data were considered cross-sectionally. The presence of mental illness does not necessarily connote a need for care in the absence of serious distress or disability, or both.17 Although the HCC survey was not intended to be a population survey of people with SMI, its availability provides a rare opportunity to delineate a national subpopulation with the most serious mental disorders and disabilities and to examine their care longitudinally. As in an earlier publication based on HCC1, we attempted to identify those with the most serious mental illnesses using three criteria: (1) a person had received a diagnosis of schizophrenia or schizoaffective disorder from a doctor; (2) a person had reported ever having been hospitalized for psychotic symptoms such as feeling that others were putting thoughts in their heads; and (3) a person reported major depressive symptoms during the prior twelve months, plus a report of a mania episode at some time in the persons life.18 Those with mania or major depressive symptoms alone and those with dysthymia, generalized anxiety disorder, or panic disorder were classified in a second group as "other mental illness" (OMI). People with these symptoms were characterized as mentally ill but not seriously mentally ill. We are aware that we have greatly underestimated people likely to be seriously mentally ill, but for our purposes, a conservative measure is preferable. Of the 160 people we designated as having SMI in HCC1, 91 still met this definition in HCC2; 40 respondents no longer met this definition but met the definition of OMI; and 29 met neither definition. One problem in longitudinal surveys of people with mental illness, as was the case in the Epidemiological Catchment Area (ECA) Studies and the National Comorbidity Survey (NCS), is that some respondents report symptoms or incidents earlier in their lifetime in one survey but do not report them on reinterview.19 Because of the use of various lifetime indicators, we believe that people who met our criteria at either time could credibly be characterized as having SMI. Assessments of treatment. The HCC interviews contained questions regarding perceived need for help for "emotional or mental health problems, such as feeling sad, blue, anxious, or nervous" and receipt of care from an emergency room or specialty mental health care provider in the past twelve months. Respondents also reported on the use of psychotropic medications in the past twelve months. Mental health visits with a primary care provider in the past twelve months were also assessed and were said to have occurred if the patient discussed feeling tense, anxious, sad, or depressed with that provider; if the provider suggested that the patient see a specialist or consult a mental health specialty program or take medication for the problem; or if the provider spent at least five minutes counseling or talking to the patient about the problem. We can assess access to various kinds of care, but the data are not adequate to credibly evaluate the appropriateness of treatment or quality of care for people with SMI. Measures of disability. People with differing levels of mental disorder should also show different levels of disability and functioning. Four items were used to identify mental healthrelated disability: accomplishing less, interference with social activities, days in bed, and days with reduced activity. Employment and full-time employment, which are associated with mental health disability, were also examined.20 The Mental Health Inventory Five-Item Questionnaire and the SF-12 were used also to assess functioning.21
If our rough characterizations of conditions as SMI, OMI, and no mental illness are reasonable, they should be associated with different levels of reduced functioning, disability, and use of such services as emergency care. In the two survey waves, people characterized as having SMI were worse off on every measure than those with OMI, although only some of these differences are statistically significant (Exhibit 1
We also found in the longitudinal sample that those who did not satisfy the classification of SMI in the first interview but did so in the second interview reported statistically significant increases in disability on most indicators. Employment changes were not statistically significant, but those in full-time work decreased from 44 percent to 35 percent.
Perceived need for emotional/mental health care and care received.
Perceived need for mental health care is only one of many ways of assessing need in the population. Epidemiological studies have observed that large numbers of people who have a major mental illness report no need or desire for care, wish to manage their problems on their own, and report other concerns that serve as barriers to expressing need.22 Others who show no evidence of mental illness report need and seek care. Although such people are only a small proportion of the general population, they are great in number and use a large proportion of all mental health treatment resources. Exhibit 2
Exhibit 2
Care by primary care providers for the SMI group was greater in HCC2 than HCC1 among those perceiving a need for care. Use of such providers was also greater among those perceiving need but without mental illness. About three-fifths of those with OMI in both waves had help from a primary care provider. Most striking in Exhibit 2
Exhibit 2 Finally, half of those with SMI took a psychotropic medication, and 61 percent of those reporting a perceived need in HCC2 did so. Among those perceiving a need, 47 percent of respondents with OMI and 29 percent with no mental illness reported taking a psychotropic medication in HCC2. Overall, the data suggest a modest increase in medication use in all need categories. Mental health care over time. The longitudinal sample was constructed so that we could track perceived need for care and care received over time among the same people with SMI. In this analysis we examined the same indicators previously described: discussion with a primary care provider, use of specialty mental health care, and a combined index of care and use of psychotropic drugs. Because the pattern of results is very similar for all of these analyses, we focus here only on receipt of mental health specialty care.
The longitudinal data shown in Exhibit 3
We also analyzed data on the mean number of visits among people receiving treatment. Among those who reported receiving specialty care in the past twelve months, those with OMI averaged slightly more visits in both waves (13.1 in HCC1 and 15.4 in HCC2) than those with SMI (10.7 and 12.5) or those with no mental illness (9.5 and 10.6), although none of these differences was statistically significant. Contact with a primary care provider for mental health care, in contrast, was related directly to the seriousness of disorder: People with SMI had the most visits in the prior twelve months (4.6 and 7.0, compared with 3.3 and 3.7 for people with OMI and 1.9 and 2.2 for people with no mental illness).
Few major changes are apparent in the HCC data, both cross-sectional and longitudinal, comparing care over the three years when services were said to be deteriorating. However, there is evidence of increased access to care for people with SMI in the later period (20002001). The data also show decreased care for people with OMI and those with no mental illness. The picture is less than encouraging because many people who reported needing care and who could benefit from evidence-based treatments were not receiving such care. But most of those who reported that they needed care for mental health problems appeared to be receiving at least some mental health attention, although largely from primary care providers. Among people with SMI who said that they needed care, 75 percent in HCC1 and 91 percent in HCC2 received some care. The comparable figures for people with OMI were 73 percent and 65 percent. By HCC2 people with the most serious mental illnesses were receiving more care from the specialty mental health sector. Furthermore, the longitudinal data indicate that those who did not meet the criteria for SMI in the earlier interview but did so in the second interview had a statistically significant increase in care. People who reported a need for care but did not meet our criteria for having a mental illness were the least likely to receive care55 percent in HCC1 and 61 percent in HCC2 received care, but mostly from the primary care sector. In sum, although much remains undone, the system of care as a whole appears to be moving modestly toward greater access to care among those with more profound needs. Our discussion has focused on people who report a need for care; of course, this indicator does not fully represent need as measured objectively, since stigma, loss of judgment due to illness, or other barriers make some people with SMI unwilling or reluctant to acknowledge need.23 Moreover, many people with distress and reduced functioning remain skeptical of mental health care and may be unaware of treatments that could be helpful. People with disorders who have no or limited health insurance and few resources also may be reluctant to acknowledge a need for care because of competing demands for their limited resources.24 At each time period, one-quarter of people with SMI were uninsured, but only a tenth of those with no mental illness were. As reported elsewhere, uninsured people were much less likely than the insured to receive any specialty mental health services.25 Once people entered the mental health specialty sector, there were no apparent or statistically significant relationships between seriousness of illness and the number of visits, an observation made in earlier studies as well.26 It appears that there may be a "democratization of care" in the specialty sector that gives insufficient attention to disparities in need once people have entered into care. Our data are crude and insufficient to support a forceful conclusion, but clearly this area requires intensive scrutiny. The good newscontrary to frequent assertions in the mental health community as noted at the outsetis that access to care for people with SMI has improved, and there is evidence of progress even in the more proximate period between 1997 and 2001. People with SMI were more likely to receive mental health specialty services in 2001 than in 1997, but those with OMI and no mental illness each showed declines. Since the latter two populations are much larger than the population with SMI, these decreases in the aggregate may contribute to the perception that services are less available. Nevertheless, a goal of MBHC and public programs is to facilitate access to those with greatest need, and this appears to be occurring. Access to care in the United States is highly dependent on perceived need and demand, and those with resources and insurance get care more easily. One way to assess whether care is appropriately allocated is to compare patterns of care among various groups with such allocations in Canada, where access is less dependent on resources or income. Ronald Kessler and his colleagues compared the use of psychiatric services between Ontario and the United States and found that the higher probability of treatment in the United States than in Canada was confined to people with low levels of need.27 MBHC may be causing U.S. care patterns to resemble those in Canada. Considering progress during the past decade, treatments have improved or become less aversive; the mental health personnel pool has expanded; and most of the population has some behavioral health coverage and access to care. But this is not a time for complacency. Medicaid, the most important program providing services to people with SMI, is facing serious cutbacks amid federal and state budget deficits, and more people are losing their private health insurance. As states look for ways of containing costs, they often look first at behavioral health coverage and at ways of limiting eligibility, coverage, and use of services. As prescription drug costs, particularly those of psychiatric medications, constitute a larger proportion of overall costs, medications have become a target for restrictions. Earlier studies of prescription limitations for people with schizophrenia found a harmful result and one that, contrary to intentions, increased rather than decreased costs.28 Thus, cost reductions have to be made thoughtfully. This is a particularly important time for mental health professionals and advocates to remain vigilant. The recent report of the Presidents New Freedom Commission on Mental Health set a high standard for us to aspire to.29 As the commission noted, "To achieve the promise of community living for everyone, new service delivery patterns and incentives must ensure that every American has easy and continuous access to the most current treatments and best support services." If we are ever to reach this goal, a great deal remains to be done. But in a world of constrained resources, it will require good information and understanding of where unmet need is largest and intelligent direction of resources to those that most need care.
This paper is part of a collaborative research effort funded by the Robert Wood Johnson Foundation (Healthcare for Communities: The Alcohol, Drug, and Mental Illness Tracking Study). The conclusions presented are solely those of the authors and should not be construed as representing those of either the Robert Wood Johnson Foundation or the collaborative group. The authors appreciate the assistance of Xiaohui Xin, who was instrumental in the preparation and analysis of the HCC data.
This article has been cited by other articles:
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