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Removing Barriers to Care 
Among Persons With Psychiatric Symptoms
By David Mechanic
from Health Affairs

<Read It On the Medscape Website>

<Other Articles On Dual Disorder Counseling>

Abstract

Introduction

Recognizing symptoms and seeking care are part of an iterative sequence in which persons become aware of changes in how they feel, assess the effects and magnitude of these changes, attribute meaning to them, decide whether they have a problem, assess the nature of the problem, calculate whether the problem would benefit from intervention, decide to pursue intervention, assess whether formal health care is required, and select the appropriate source of care.^[3] At various points in the sequence, persons may reassess various issues such as the magnitude of symptoms, the appropriate meaning of these symptoms, and the most useful sources of assistance as they acquire more information and experience about the course of their symptoms.Most surveys cannot capture the richness of the experience of interpreting meanings and making attributions, nor can they disentangle the web of interconnections involved in such decision making. Studies that have addressed the sequential nature of the help-seeking process generally find that influences vary at different points in the illness interpretation and help-seeking process.^[4]

David Mechanic, René Dubos Professor of Behavioral Sciences and director of the Institute for Health, Health Care Policy, and Aging Research, Rutgers University, New Brunswick, New Jersey, Health Aff 21(3):137-147, 2002. © 2002 Project HOPE

Recent Surveys Of Reported Symptoms And Care

I briefly review three nationally representative studies to provide some insight into barriers to care among persons who report symptoms and limitations that might signify a need. The most recent is a telephone survey conducted in 2001 for the National Mental Health Association (NMHA) of 3,239 adults age eighteen and older. Respondents to this survey (known as NMHAS) were screened using a variety of questions on depression and anxiety; 1,319 respondents were interviewed in greater depth, including 999 with symptoms of clinical depression or generalized anxiety disorder or both and 320 who were judged to be asymptomatic.^[5] I also use reports from the National Comorbidity Survey (NCS), a face-to-face survey of 8,098 respondents interviewed between 1990 and 1992.^[6] This survey assessed the prevalence of Diagnostic and Statistical Manual of Mental Disorders, Third Edition, Revised (DSM-III-R) disorders among persons ages fifteen to fifty-four. Further, I report findings from the Healthcare for Communities (HCC) study, a telephone survey of 9,585 adults from sixty U.S. communities obtained in 1997-98; the survey component I examine here was conducted for the purpose of tracking alcohol, drug, and mental health services use.^[7]

Each of these surveys is cross-sectional, so they all are limited in representing the sequential help-seeking process. All three agree, however, that large proportions of the population who have symptoms indicative of a possible mental illness receive no care for this problem. Ronald Kessler and his colleagues, for example, found that only 46 percent of respondents who met their criteria for a twelvemonth serious mental illness (a DSM disorder associated with measured impairment) received professional treatment for their emotional problem in the prior twelve months.^[8] Donna McAlpine and I have reported that in the HCC almost three-fifths of persons with a severe mental illness did not receive any specialty mental health care.^[9] Similarly, the NMHAS reported that while almost a third of the adults surveyed had symptoms indicative of clinical depression or generalized anxiety disorder, only 18 percent of these respondents received a doctor's diagnosis for those symptoms. In each of these surveys, the proportions of persons receiving treatment can be greatly enlarged by adding additional comorbidities to the primary diagnostic categories or by supplementing these with various indicators of impairment. For example, Ramin Mojtabai and colleagues, using the NCS, reported that while only 13 percent of persons with only a mood disorder sought mental health specialty care in the prior twelve months, 25 percent who had a combination of mood, anxiety, and substance abuse disorders sought such care.^[10]

How People Explain Not Seeking Help

The structured population surveys that measure disorders limit respondents' leeway to explain themselves. Thus, we must reconstruct respondents' motivations from how they responded to the reasons for not seeking care provided by the survey instruments used.

In the NCS only 32 percent of the 1,792 respondents who had a twelve-month disorder sought professional help of any kind or perceived a need for such help. Similarly, only 18 percent of respondents in the NMHAS who had symptoms characteristic of major depression or generalized anxiety disorder had received a diagnosis from a doctor. Less than one-tenth of the undiagnosed group believed that their symptoms meant that they had a mental disorder, and more than half of those with a doctor's diagnosis also did not agree. The stigma associated with the term mental disorder is an important barrier; even patients commonly treated in inpatient units reject this characterization of their problem.^[11] Persons with a serious mental illness who deny that their problem is a "mental illness" report more positive social relations and a higher quality of life. Much of the negative effect of defining one's problems as a mental illness is explained by perceived stigma, lower self esteem, and depressive symptomatology.^[12] Beyond diagnosis and impairment, other factors associated with perceiving a need for professional care in multivariate analyses include a positive attitude toward seeking mental health care, marital disruption, being female, having comorbid physical conditions, having a history of maternal psychopathology, and having insurance coverage.^[13]

In the NMHAS, undiagnosed respondents who reported that they would not seek a doctor's assistance for symptoms such as those covered by the survey were asked to respond to various possible reasons.^[14] The largest group, 44 percent, responded "not serious, I can handle it." The second largest group, 28 percent, reported having limited or no insurance, and another 18 percent reported being "too busy to see a mental health professional." While the items did not adequately capture issues related to stigma, the item "don't want a record of having sought care" was only cited by 5 percent of this group. About one-tenth of respondents reported fear of having to take medications or not knowing of a doctor to go to.

In the NCS Kessler and colleagues also report that of those with twelve-month serious mental illness, 55 percent did not believe that they had a problem that required treatment.^[15] The majority of those who did not seek treatment also reported that they wanted to solve the problem on their own (72 percent) or thought that the problem would get better by itself (61 percent). Although the researchers down play the importance of insurance, 44 percent of respondents reported that they didn't seek care because care was too expensive, and 36 percent indicated that their insurance would not cover treatment. Other frequent responses included being unsure about where to go for help (41 percent), feeling that seeking help takes too much time or is inconvenient (28 percent), and various responses indicating perceived lack of treatment effectiveness (45 percent).

These lists of reasons provide some useful information but fail to accurately convey the complexity of people's thought processes as they try to make sense of their symptoms, decide what to do about them, and then rationalize their decisions. Consider a person who has a serious disorder that somewhat limits activities and who perceives that treatment might be helpful. However, lacking insurance coverage and having competing wants and needs for use of available resources, such persons might decide that they want to solve the problem on their own and that the problem is likely to go away by itself eventually anyway. Thus, they might be willing to delay care and observe the course of their distress.

The decision process itself is likely to be sequential, during which persons monitor their symptoms, determine the extent to which they get better or worse, and, depending on the seriousness and course of the symptoms, may periodically reevaluate their decision. Encouragement or coercion from friends and family or from a primary care physician also may influence the decision process.^[16] Also, persons who know other users of mental health services or who are part of larger networks of "friends and supporters" of mental health services use are more likely to enter pathways of care.^[17] At any point, reevaluations of the need for treatment may be weighed against other economic and family needs, and insurance may play a larger role than is apparent. Economic studies conducted prior to the widespread use of managed behavioral health care found that the use of psychiatric services was more responsive to insurance coverage than was the case with other medical services.^[18] It seems plausible that managed care has modified this pattern by aggressive utilization management of mental health care use, but direct evidence on this issue is not available.

Correlates Of Care-Seeking Stages

Numerous studies have observed that different factors affect various stages of the help-seeking process. As Mojtabai and colleagues found, the magnitude and severity of symptoms and limitations are the most important predictors of recognition of a need for professional help.^[19] However, only 59 percent of those who perceived such a need sought help, and none of the psychiatric variables of importance in the recognition process was statistically significant at this next stage. Instead, having a positive attitude toward seeking mental health care, being in the 45-54 age group, and reporting a physical condition were associated with acting on one's perceived need. The insurance measure available in this study was poor, but there was a tendency for those with insurance coverage other than Medicaid to be more likely to seek care.

Among those who sought care, 44 percent consulted a mental health clinician. Selection of a mental health clinician rather than another provider was associated with greater psychiatric morbidity. Positive attitudes toward professional help and insurance coverage also increased the likelihood of selecting mental health specialty care. These findings are consistent with earlier studies of community and student populations that found that some social characteristics function more in deciding whether to seek help, while others are more important in determining pathways into specific types of care.^[20] Over time people tend toward sources of assistance that are socially and culturally compatible.

Overall, the magnitude and severity of distress and disability are the most important determinants of perceiving a need for care. Help seekers with greater distress are more likely to use mental health specialty care than are those with less distress. Social selection, however, occurs across the range of distress and impairment, and factors independent of psychopathology and disability help to explain who enters treatment and the varying trajectories of care. Understanding such factors could be useful in designing strategies to achieve a better fit between need and treatment.

Treatment of Mental Illness Is Not Unique

The processes that define how persons with symptoms identify need and decide to seek care are common to most types of illness. However, the values measured on predictors such as perceived stigma, insurance coverage, expectations of treatment benefits, and the like may vary a great deal from one illness to another.^[21]

In a classic article on the ecology of medical care, Kerr White and his colleagues used existing data to characterize the selective trajectories that brought individuals from a population at risk to various levels of care.^[22] A recent update of these data indicates that approximately 80 percent of the population report an illness in any given month, but only about a third of the population consider seeking medical care.^[23] Slightly more than one in five will actually visit a physician's office. Approximately one in fifteen will visit an alternative-medicine provider. As with psychiatric symptoms, the extent of morbidity is the single best predictor of who reaches treatment, but the care trajectory depends on many factors other than symptoms.

A variety of models have been developed to explain these help-seeking trajectories. ^[24] Use of less conventional treatments and providers fits a social movements model. Early users of such services are quite distinct in their social and cultural characteristics, but as the provider or treatment gains wider cultural acceptance, "The magnitude and severity of distress and disability are the most important determinants of perceiving a need for care." those using the service approximate more closely the modal characteristics of the general population.^[25] Bringing more people with psychiatric need into care depends in part on the cultural acceptability of psychiatric treatments.

Closing The Gap Between Psychiatric Need And Care

Mental health proponents, believing that effective treatments are available for many psychiatric conditions, are strongly motivated to close the gap between the prevalence of conditions and the provision of treatment. They are joined by pharmaceutical manufacturers and practitioners whose economic and professional interests are tied to public acceptance of various medications and forms of therapy. As newer medications have become available, a close alliance has developed among mental health advocates, mental health professionals, and pharmaceutical companies, all seeking to gain cultural acceptability and market share for their therapies. This coalition is increasingly at loggerheads with public and private purchasers and with managed behavioral health care companies, which are concerned about the potential growth in demand and costs. The challenge is to clearly identify who among the population with psychiatric symptoms could gain from treatment and how best to remove the barriers to their treatment.

Prevalence of Psychiatric Conditions

Overselling the Need for Treatment

Many persons are troubled by the notion that much of the population suffers from a mental illness, and very few would willingly accept themselves as a member of this category. In fact, such assertions about the population are meaningless. Most people will have a medical condition during any given year, but making such a public pronouncement would have no purpose. Beyond whatever rhetorical value it might have to alert or alarm the public about the prevalence of "mental illness," such estimates have little policy import. A large variety of conditions are listed in the DSM.We would do much better discussing schizophrenia, major depression, and anxiety disorders in their appropriate context rather than talking broadly about mental health and mental illness. The term mental illness itself is a major barrier to treatment. Moving away from this concept is difficult to achieve but a worthy aspiration.

Inadequate Treatment for Serious Disorders

A solution to this challenge is to have a broad definition for eligibility and coverage but then allow experienced professionals to make the determination of what care is needed. This essentially is what managed behavioral health care was intended to do, and such an approach is required if we are to have any reasonable implementation of parity in health insurance between general medical and mental health care. Managed behavioral health care, however, lacks trust among advocates for the mentally ill as well as the general public. Problems of trust are compounded by disagreements among professionals about appropriate criteria for treatment, by the profit orientation of much of the managed care industry, and by very vigorous management of mental health services compared with management of other medical services.^[30] Thus,managed behavioral health care now functions under sustained derogation, litigation, and efforts at micro management. This is hardly a helpful atmosphere in which to make difficult policy and treatment decisions.

Insurance For Treatment of Psychiatric Disorders

Insurance coverage is probably the most significant factor affecting whether persons with need receive appropriate care. Open-ended insurance for the range of available treatments, and the ability of providers to induce demand for some of these services, exceeds anything purchasers are willing to pay for. Thus, restoring trust in managed behavioral health care strategies, developing systems to base treatment availability on the best available evidence and practice, and providing mechanisms for procedural justice in rationing care are necessary requirements. Norman Daniels and James Sabin suggest a starting framework for procedural justice that includes making rationales for limiting access available to the public, providing "reasonable" reasons for such limitations, allowing patients and doctors to challenge decisions and argue for their revision through established mechanisms, and having a process to ensure fidelity to these procedures.^[31] The evidence is persuasive that a well-functioning managed care approach can provide an acceptable level of care at a cost that purchasers could support, and managed care is the only road to a realistic application of parity.^[32]

The Need For Sophisticated Public Education

Despite much effort, the public is still only vaguely aware of most types of psychiatric morbidity and the availability of effective treatments. Most of the effort has gone into increasing awareness of clinical depression and its treatment, and the greatest progress seems to have been made in this area. But even here, two fifths of persons in the NMHAS who were symptomatic but undiagnosed reported that they had never heard of this condition. In a condition less well known to the public, generalized anxiety disorder, 84 percent who were symptomatic but undiagnosed reported that they had never heard of this condition.

We do not have comparable data for other specific diagnostic entities, but we can reasonably assume that the public is unaware of most. The public is also unaware of most medical diagnoses, and it would be pointless to attempt to achieve broad, highly specific knowledge. However, a small number of conditions account for most population morbidity, and increasing public understanding of these conditions and their evidence-based treatment potential would be of value. Mental health professionals have been correct in focusing on depression because of its profound disabling consequences and the availability of helpful treatment.^[33] Expanding efforts to provide a more sophisticated understanding of the half-dozen or so conditions that cause much impairment and for which useful treatments are available could serve as a good basis for future educational efforts.

Behavioral research makes clear that knowledge by itself is not a sufficient inducement to bring people into needed care. Distress and impairment and awareness of treatment potential provide motivation, but a range of other enabling factors make it more probable that perceived need will translate into treatment. These include the implementation of an action plan with such steps as specifically knowing how to call for help or where to go and overcoming barriers of payment, transportation, embarrassments, and other disincentives to action. Involvement in social circles supportive of treatment helps some to overcome barriers of what to do and how to do it and makes taking some action more acceptable. Public information campaigns have to more clearly include and explain action plans.^[34]

Additional Implications For Public Policy

The challenge for public policy is to develop a structure that makes it possible to close the gap in unmet need at a cost that purchasers and the larger society will find acceptable. Advocates have argued for decades for more resources to be devoted to mental health treatment, but they face many competitors. The good news is that we have increasingly convincing evidence that need can be met at an acceptable cost by sophisticated management of care. The bad news is that the instruments for achieving this -- managed behavioral health care strategies -- are persistently bad-mouthed by professionals who see their incomes and autonomy threatened and by many advocates who dislike any constraints on the provision of care. Any reasonable pattern of mental health services that is sufficiently comprehensive and that does not exclude large numbers of people will have to be a system that is carefully managed.

Policy makers have to stay focused on the key issues: extension of insurance coverage for psychiatric morbidity; continued development and dissemination of models of best practice; encouragement of an evidence-based decision process; and procedures to ensure continued dialogue and procedural fairness in managed care decision making. They also must recognize the uncertainties and inadequacies of care and promote continued knowledge development and understanding.

Assessments of need are best made by experienced professionals. From a policy perspective, this is achieved by easing the initial access to care and evaluation, so that a balanced judgment can be made of the extent of need and the benefits from timely and focused treatment. In principle, this is what good managed behavioral health care is intended to achieve, but the public remains suspicious of its motives and decision-making criteria

Conclusion

The challenge is to increase acceptance of a managed approach that is essential to putting into place a realistic concept of mental health parity. It is evident that a tighter regulatory structure will be required to achieve public legitimacy. Such a structure would include an appropriate and fair complaint and grievance process, the use of patient representatives to adjudicate disputes informally and early in the treatment process, and clear and visible guidelines for rationing decisions that can be contested by patients or their advocates. This is not an ideal world, but probably all of this is possible within present realities. Government can help by prudently designing a regulatory framework that achieves these objectives and contributes to building public trust.

This research was supported by the Rutgers University NIMH Center for Research on the Organization and Financing of Care for the Severely Mentally Ill and by Healthcare for Communities: The Alcohol, Drug, and Mental Illness Tracking Study, a collaborative effort funded by the Robert Wood Johnson Foundation (RWJF). The views expressed in this paper are the author's and imply no endorsement by the National Institute of Mental Health or the RWJF.

Sidebar: Notes

1. U.S. Department of Health and Human Services, Mental Health: A Report of the Surgeon General(Rockville, Md.: DHHS, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health, 1999).
2. K.B.Wells et al., "Impact of Disseminating Quality Improvement Programs for Depression in Managed Primary Care: A Randomized Controlled Trial," Journal of the American Medical Association 283, no. 2 (2000): 212-220.
3. D.Mechanic, "Sociocultural and Social-Psychological Factors Affecting Personal Responses to Psychological Disorder," Journal of Health and Social Behavior 16, no. 4 (1975): 393-404.
4. R.Mojtabai, M.Olfson, and D.Mechanic, "Perceived Need and Help-Seeking in Adults with mood, Anxiety, or Substance Use Disorders," Archives of General Psychiatry 59, no. 1 (2002): 77-84; J.R. Greenley, D. Mechanic, and P.D. Cleary, "Seeking Help for Psychologic Problems: A Replication and Extension," Medical Care 25, no. 12 (1987): 1113-1128; J.R. Greenley and D.Mechanic, "Social Selection in Seeking Help for Psychological Problems," Journal of Health and Social Behavior 17, no. 3 (1976): 249-262; and C. Kadushin, Why People Go to Psychiatrists (New York: Atherton Press, 1969).
5. Roper Starch Worldwide Inc., America's mental health Survey 2001 (Prepared for the national mental health Association,May 2001), www.nmha.org/pdfdocs/mentalhealthreport2001.pdf (21March 2002).
6. R.C. Kessler et al., "The Prevalence and Correlates of Untreated Serious Mental Illness," Health Services Research 36, no. 6, part 1 (2001): 987-1007.
7. D.D. McAlpine ad D.Mechanic, "Utilization of specialty mental health care among Persons with Severe Mental Illness: The Roles of Demographics, Need, Insurance, and Risk," Health Services Research 35, no. 1, part II (2000): 277-292.
8. Kessler et al., "The Prevalence and Correlates of Untreated Serious mental Illness."
9. McAlpine and Mechanic, "Utilization of Specialty mental Health Care."
10. Mojtabai et al., "Perceived Need and Help-Seeking."
11. M. Baker and M. Menken, "Time to Abandon the Term mental Illness," British Medical Journal 322, no. 7291 (2001): 937.
12. D. Mechanic et al., "Effects of Illness Attribution and Depression on the Quality of Life among Persons with Serious Mental Illness," Social Science and Medicine 39, no. 2(1994): 155-164.
13. Mojtabai et al., "Perceived Need and Help-Seeking."
14. Roper Starch worldwide Inc., America's mental health Survey 2001.
15. Kessler et al., "The Prevalence and Correlates of Untreated Serious mental Illness."
16. B.A. Pescosolido, C.B. Gardner, and K.M. Lubell, "How people Get into mental health Services: Stories of Choice, Coercion, and 'Muddling Through' from 'First-Timers'," Social Science and medicine 46, no. 2(1998): 275-286.
17. C.Kadushin, "The Friends and Supporters of Psychotherapy: on social circles in urban Life," American Sociological review 31, no. 6 (1966): 786-802; and Greenley and Mechanic, "Social Selection in Seeking Help for Psychological Problems."
18. R.G. Frank and T.G. McGuire, "A Review of Studies of the Impact of Insurance on the Demand and Utilization of Specialty Mental Health Services," Health Services Research 21, no. 2, part II (1986): 241-265.
19. Mojtabai et al., "Perceived Need and Help-Seeking."
20. Greenley et al., "Seeking help for Psychologic Problems"; and Greenley and Mechanic, "Social Selection in Seeking Help for Psychological Problems."
21. D.Mechanic, Medical Sociology, 2d ed. (New York: Free Press, 1978).
22. K.L.White, T.F. Williams, and B.G. Greenberg, "The Ecology ofMedical Care," New England Journal of medicine 265, no. 18 (1961): 885-892.
23. L.A.Green et al., "The Ecology ofMedical Care Revisited," New England Journal of Medicine 344, no. 26 (2001): 2021-2025.
24. R.M. Andersen and P.L. Davidson, "Measuring Access and Trends," in Changing the U.S. Health Care System, ed. R.M. Andersen, T.H. Rice, and G.F. Kominski (San Francisco: Jossey-Bass, 1996), 13-40; and Mechanic, Medical Sociology.
25. D.Mechanic, Mental Health and Social Policy: The Emergence of managed Care, 4th ed. (Boston: Allyn and Bacon, 1999).
26. L.N. Robins and D.A. Regier, eds., Psychiatric Disorders in America: The Epidemiological Catchment Area Study (New York: Free Press, 1991); and R.C. Kessler et al., "Lifetime and Twelve-Month Prevalence of DSM-III-R Psychiatric Disorders in the United States: Results from the National Comorbidity Survey," Archives of General Psychiatry 51, no. 1 (1994): 8-19.
27. D.A. Regier et al., "Limitations of Diagnostic Criteria and Assessment Instruments for mental Disorders," Archives of General Psychiatry 55, no. 2(1998): 109-115; and J.C.Wakefield, "DSM-IV: Are we Making Diagnostic Progress?" Contemporary Psychology 41, no. 7 (1996): 646-652.
28. R.C. Kessler et al., "The Twelve-Month Prevalence and Correlates of Serious Mental Illness (SMI)," in Mental Health, United States, 1996, ed. R.W. Manderscheid and M.A. Sonnenschein, DHHS Pub. no. (SMA) 96-3098(Washington: U.S.Government Printing Office, 1996), 59-70;W.E.Narrow et al., "Revised Prevalence Estimates of Mental Disorders in the United States," Archives of General Psychiatry (February 2002): 115-123; and J.C.Wakefield and R.L. Spitzer, "Lowered Estimates -- but of What?" Archives of General Psychiatry (February 2002): 129-130.
29. D.Mechanic, "Closing Gaps in mental health care for Persons with Serious mental Illness," Health Services Research 36, no. 6, part 1 (2001): 1009-1017.
30. D. Mechanic and D.D. McAlpine, "Mission Unfulfilled: Potholes on the Road to Mental Health Parity," Health Affairs (Sep/Oct 1999): 7-21.
31. N. Daniels and J. Sabin, "Limits to Health Care: Fair Procedures, Democratic Deliberation, and the Legitimacy Problem for Insurers," Philosophy and Public Affairs 26, no. 4 (1997): 303-350.
32. D.P. Gitterman, R. Sturm, and R.M. Scheffler, "Toward Full mental Health Parity and Beyond," Health Affairs (July/Aug 2001): 68-76.
33. K.B.Wells et al., Caring for Depression (Cambridge: Harvard University Press, 1996).
34. H. Leventhal et al., "Illness Representations: Theoretical Foundations," in Perceptions of Health and Illness: Current Research and Applications, ed. K.J. Petrie and J.A. Weinman (Amsterdam: Hardwood Academic Publishers, 1997), 19-45.

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