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© Terence T. Gorski, 2001
Removing Barriers to Care
Among Persons With Psychiatric Symptoms
By David Mechanic
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Many persons with serious psychiatric conditions who could benefit from
available treatments do not receive care, and the barriers are generally
understood to be limited knowledge, inadequacies in insurance coverage,
and stigma. Sophisticated approaches are needed to realistically
eliminate these and other barriers. Public policy should focus on
criteria for need for care and encourage interventions that facilitate
treatment when it can be helpful. Appropriate insurance coverage is
indispensable, and achieving mental health parity will require careful
management of care. Policy makers must help to create a trustworthy
management structure that is inclusive, that develops and disseminates
models of best practice, that encourages evidence-based decision
processes, and that ensures continuing dialogue and procedural fairness
in managed care decision making.
The gap between the prevalence of psychiatric morbidity in the U.S.
population and the provision of appropriate care is increasingly viewed
as a major public health issue. Much effort is now being
given to understanding and eliminating barriers to care, to informing
the public about available treatments, and to motivating primary care
physicians to recognize and treat these conditions.  Many
now recognize that lack of insurance coverage, stigma, and inadequate
public information contribute to this gap between prevalence and care,
but a more complete understanding is needed for the sophisticated design
of successful programs. This paper presents a model that takes account
of each stage of the help-seeking process and suggests targeted points
of intervention relevant to meeting needs in an evidence-based and
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. 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.
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.
I also use reports from the National Comorbidity Survey (NCS), a
face-to-face survey of 8,098 respondents interviewed between 1990 and
1992. 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.
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. 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.
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
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. 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.
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.
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.
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. 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
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. 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. 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. 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.
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. Over time people
tend toward sources of assistance that are socially and culturally
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.
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. 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. 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
A variety of models have been developed to explain these help-seeking
trajectories.  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. Bringing more people with psychiatric
need into care depends in part on the cultural acceptability of
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
In the past couple of decades psychiatric epidemiology has greatly
advanced its influence by measuring conditions representative of
disorders covered by the DSM. These studies generally
find that about a third of the U.S. population has had a psychiatric or
substance abuse disorder in the prior twelve months, and more than half
are believed to have had a disorder that meets DSM criteria at some
point in their lives. Similar estimates are increasingly made for
children. There is much reason to believe that the criteria for
disorders based on DSM descriptions reached by professional consensus
are over inclusive; that is, they include persons who do not need,would
not benefit from, and may even be harmed by treatment.
More recent studies have added disability and impairment criteria to
narrow the definition of needed treatment. This improves
the estimates' usefulness, but they continue to be unconvincing to
Overselling the Need for Treatment
There are disadvantages in overselling the need for treatment. Inflated
estimates are met with considerable public skepticism and have limited
credibility, thereby undermining support for extensions of insurance.
Others derive the impression that providing needed mental health care is
a bottomless pit and not a high priority among competing needs and
demands. There is also concern that a treatment focus on symptoms that
will resolve themselves and that are often reactive to disturbing life
circumstances could undermine more constructive coping efforts and
capacities. Some mental health advocacy groups have sought treatment and
mental health parity legislation only for persons who meet criteria for
specified conditions, often referred to as "disorders of the
brain." While the intent of such specification has public policy
merit, such artificial distinctions have no scientific validity and
exclude many who would benefit from 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
Inadequate Treatment for Serious Disorders
Studies that focus on those in the population with the most severe and
persistent illnesses find that the care received is inadequate by any
reasonable criterion. Many factors may contribute, such
as the lack of insight and resistance to treatment among many patients,
lack or inadequacy of insurance coverage, lack of access to appropriate
services and professionals, and the seemingly intractable character of
some of these disorders that may discourage professional interest.
Although certain services can be helpful for even the most intractable
disorders, providing such services requires more effort and coordination
than is often available. There is also competition and value
disagreement among mental health advocates about the desirability of
focusing services on a smaller but more severely ill population compared
with efforts to prevent or treat less severe pathology earlier. These
divisions are exacerbated by uncertainties associated with the costs and
benefits of different treatment priorities.
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.
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
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. 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.
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. 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
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
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
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.
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