Copyright ª Blackwell Munksgaard 2005 Bipolar Disorders 2005: 7: 236–245

BIPOLAR DISORDERS

Review Article

Pathways to care for patients with bipolar disorder Bhugra D, Flick GR. Pathways to care for patients with bipolar disorder. Bipolar Disord 2005: 7: 236–245. ª Blackwell Munksgaard, 2005 Bipolar disorder is a chronic, debilitating psychiatric illness with serious ramifications for patients, their families, and society. Despite the availability of effective treatments, this disease often goes untreated due to medical, financial, legal/governmental, and cultural barriers. In this review we explore possible reasons for this problem. Misdiagnosis of bipolar disorders is a common medical barrier. One pathway to care for individuals with bipolar disorder is through referral from primary care, but primary care physicians generally have not received special training in the recognition and management of bipolar disorder. This often leads to diagnostic delays or errors, which prevents timely ÔfilteringÕ of patients into specialized care. Using data bases we explored these pathways. Legislation in the USA, such as the Emergency Medical Treatment and Active Labor Act (EMTALA), designed to ensure access to inpatient mental health care, has instead given hospitals financial incentives to limit inpatient mental health care capacities. Reimbursement of mental health care expenses is a significant issue impacting a patient’s ability to gain access to care, as bipolar disorder is a costly disease to treat. Improving access to care among the bipolar community will require multilateral strategies to influence the actions and attitudes of patients, communities, providers, health care systems, and state/national governments. In other cultures, barriers to care differ according to a number of factors such as type of services, explanatory models of illness, misdiagnosis and perceptions of care givers. It is essential that clinicians are aware of pathways and barriers so that appropriate and accessible care can be provided.

Bipolar disorder is a debilitating, recurring psychiatric illness characterized by alternating episodes of depression and mania or hypomania. Despite the availability of effective therapies, fewer than half of the affected patients in the USA receive appropriate treatment (1). This unfortunate statistic reflects the presence of medical, financial, legal/governmental, and cultural barriers to patients gaining access to appropriate care. Recently, the President’s New Freedom Commission on Mental Health solicited public comment on a variety of topics pertaining to mental health care services in the United States (2). Respondents were overwhelmingly unified in their dissatisfaction with current patterns of access to

The authors of this paper do not have any commercial associations that might pose a conflict of interest in connection with this manuscript.

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Dinesh Bhugraa and Gene R Flickb a

Department of Mental Health and Cultural Diversity, David Goldberg Centre, Institute of Psychiatry, London, UK, bDepartment of Psychiatry, St Mary’s Medical Center, Evansville, IN, USA

Key words: barriers to access – bipolar disorder – mental health care Received 1 July 2004, revised and accepted for publication 18 February 2005 Corresponding author: Prof Dinesh Bhugra, PhD, Department of Mental Health and Cultural Diversity, David Goldberg Centre, Institute of Psychiatry, De Crespigny Park, Denmark Hill, London SE5 8AK, UK. Fax: +44 207 848 0333; e-mail: [email protected]

mental health care services. Specifically, they described a treatment environment that relies too heavily on crisis response rather than comprehensive, on-going, long-term illness management. Other systemic barriers that were identified included insufficient funding for mental health services and support programs, gaps in the training of providers and services, and a lack of culturally compatible, accessible and acceptable services. The data from the UK on bipolar disorder are scanty. Between 2000 and 2001, the World Health Organization’s (WHO) Project Atlas collected information on mental health resource utilization among 181 member states, encompassing close to 99% of the world’s population and noted that onethird of countries reported having no specific budget for mental health care. In half of the remaining countries, mental health expenditures made up more than 1% of total health care budgets. A significant proportion of countries

Pathways to care lacked any type of mental health policy (>40%) or mental health program (>30%) (3). Although these include all mental illnesses, the impact of bipolar disorders cannot be underestimated. As Angst (4) noted, very probably half the diagnoses of depression will be hidden bipolar. This article reviews some of the current issues that impact patient access to appropriate mental health care. The primary focus is on identifying the various personal, governmental, financial, and other barriers that preclude attainment of quality mental health care, with a particular emphasis on bipolar disorder. The overall discussion will include issues of international interest, with some focus on the UK and the USA as examples. The relevant papers were selected using various literature search strategies to identify pathways into care and bipolar disorder. Epidemiology of bipolar disease

Each year, approximately 100,000 people in the USA experience an initial, acute bipolar episode (5). Data from the US National Comorbidity Survey, a general population survey of DSM-IIIR (Diagnostic and Statistical Manual of Mental Disorders, Third Edition-Revised) disorders, indicate a lifetime prevalence of 0.45% for bipolar I disorder (6). Other samples, drawn from community settings, have estimated the lifetime prevalence of bipolar I disorder to be approximately 1.6% (7). Epidemiologic studies such as these use DSM criteria and typically report lifetime prevalence rates of up to 2% for bipolar disorder (6–9). However, by using a broader definition of bipolar disease, along with diagnostic instruments with greater sensitivity to bipolar II disorder in particular, lifetime prevalence rates of 3.4–3.7% have been reported (10). Another problem in epidemiological studies is that they are often based on single contact and therefore, the lack of follow up may miss cases of bipolar disorders (4). The distribution of bipolar disease appears to be fairly consistent around the globe. According to the 1995 WHO statistics (3), the prevalence of bipolar disorder is similar among various geographic regions, ranging from 0.27–0.28% (Africa, Europe, and Southeast Asia) to 0.35% (Americas, Eastern Mediterranean, and Western Pacific). The distribution of disease also seems to be relatively unaffected by the level of country development. Prevalence among the least developed areas and economies in transition ranges from 0.27 to 0.29%, while developed and developing regions have a prevalence of 0.30–0.32%. There is some disparity among regions with regard to the incidence of

disability resulting from bipolar disorder. Thus the highest numbers of disabled persons per 100,000 were found in the Eastern Mediterranean and Western Pacific (0.07) compared with the Americas and Europe (0.03). In general, the reported rate of disabled persons per 100,000 was highest in developing regions (0.30) and lowest in developed areas (0.03). There are also two additional problems associated with bipolar disorders. These include an increased relapse rate and the problem associated with sub-threshold diagnoses. In a follow-up study, Angst et al. (11) concluded that the relapse rate of bipolar disorder was twice that of depressive disorder. Surprisingly, there were no gender differences. Angst (4) has persuasively argued that burden related to bipolar disorders is significantly underestimated. Angst et al. (12) had suggested the possibility of a broad-spectrum bipolar disorder especially in regard to hypomania. These authors (13) have also argued that nearly 13% of their sample showed soft signs of bipolarity intermediate between bipolar disorder and normality. These findings indicate that not only is the diagnostic pattern of bipolar disorders complex, but also the pathways will be more complex when compared with other mental illnesses. Personal and societal burden of bipolar disease

Bipolar illness presents a significant personal and societal financial burden. Health care costs associated with bipolar illness in the USA during 1991 totaled $45 billion. Of this amount, $7 billion were spent on direct patient treatment costs and criminal justice system expenses. A staggering $38 billion reflected indirect costs associated with the lost productivity of wage-earning patients, institutionalized patients, suicide victims, and caregivers (14). Quality of life is significantly altered in patients with bipolar disorder. The WHO, in a report published in 2001, listed bipolar disorder as the ninth leading cause worldwide of disability-adjusted life years (DALYs) in persons between the ages of 15 and 44 years. In women among this age group, bipolar illness ranked as the seventh leading cause of DALYs (15). These rankings indicate that bipolar disease has a greater impact on quality of life than many other serious conditions, such as ischemic heart disease, cerebrovascular disease, and osteoarthritis. The enormously disruptive nature of bipolar illness extends to the patient’s family, social relationships, finances, and career. Studies have found that bipolar patients have a greater likelihood of

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experiencing separation, marital problems, or divorce. They are also more likely to remain single throughout their lives (16). In a survey of bipolar patients conducted by the National Depressive and Manic-Depressive Association (NDMDA), 73% of those with bipolar disease onset prior to the age of 20 reported having experienced divorce or marital difficulties (16). In this group of patients, 35% reported having been fired from a job and 70% indicated having financial difficulties.

difficult to differentiate bipolar disease from schizophrenia because of similar symptomatology, including delusions, incoherence, inappropriate flat affect, and hallucinations (21). In the UK it has been argued that black patients with mania are more likely to be diagnosed as having schizophrenia (22, 23).

Cultural and ethnic factors

Cultural perceptions of mental illness Diagnostic barriers to mental health care

Among the major and fundamental impediments to the successful management of bipolar illness, in particular, are under-recognition and misdiagnosis. Bipolar disease is frequently misdiagnosed because of symptoms which may be confused with schizoaffective disorder, schizophrenia, or personality disorder. As mentioned above, soft signs of illness may add to the difficulties in reaching a clear diagnosis. Symptom patterns have been shown to be related to age (17). A survey of 600 bipolar patients affiliated with the NDMDA in 2000 suggested that 69% had been initially misdiagnosed. On average, these patients consulted four different physicians (it was not specified whether these were psychiatrists) before receiving an accurate diagnosis (18). Prior to diagnosis 70% of patients had had one or more of the following symptoms: erratic sleeping, heightened mood or elation, racing thoughts, increased physical and mental activity, increased speech production, impulsiveness or poor judgment. These indicated that in spite of typical symptoms, misdiagnosis and underdiagnosis is likely. The fact that the patients did not describe all these symptoms to the clinicians indicates a reluctance and perhaps underlying stigma which needs further investigation. The delay in receiving a proper clinical diagnosis of bipolar disorder may take a decade or even longer in many patients (18, 19). In a large number of bipolar patients, particularly younger individuals, initial expressions of the disease appear only in the form of depressive episodes. Such patients may be initially misdiagnosed as having major depression and are incorrectly managed, resulting in a delay of the implementation of mood-stabilizer therapy and proper counseling, leading to a reduction in the eventual effectiveness of appropriate drug treatment for bipolar disease (20). The overutilization of antidepressants in bipolar patients has been associated with an increased risk of drug-induced mania and possibly precipitating episodes of treatment-resistant rapid cycling (19). It can also be

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Certain cultures have developed distinct attitudes and behaviors with regard to emotional health. Social mores can have a great influence on the likelihood of a patient pursuing medical evaluation for depression or mania. For example, among Hispanic societies, there appears to be a particularly strong cultural stigma surrounding mental illness. High rates of somatization have been observed among depressed individuals in such cultures, possibly reflecting a need to legitimize health care-seeking activity (24). Attitudes to these experiences may cause a delay in seeking medical attention for mood problems. It is also possible that attitudes toward hypomania may be different when compared with those toward depression, thus offering possible explanations of these symptoms. As another example, Japan, China, and Korea have historically viewed depression not as a medical condition, but merely a reflection of idleness or some other physical disorder. For this reason, medical attention was rarely sought for evaluation of depressive symptoms alone. While this attitude is changing, such perceptions are not uncommon in Asian societies today, particularly among older citizens (25). Bhugra et al. (26) found that depression was seen as a natural response to life events and stressors indicating that delays in help-seeking may reflect the varying models of explanations of distress. Presentation and evaluation of mental illness

Certain Ôcore symptomsÕ of depressive illness have been found to span diverse geographic and cultural boundaries, including anxiety, sadness, disturbed sleep, fatigue, loss of interest, difficulty concentrating, and feelings of inadequacy and worthlessness (25, 27). This suggests that depressive illness is intrinsically similar among cultures, despite diverse differences in individual patient characteristics. However, cultural influences seem to have an impact on the expression of secondary manifestations of depressive disorders. For example, patients

Pathways to care with depression in developing countries rarely exhibit feelings of guilt or suicidal tendencies, although they are more likely to demonstrate somatization or hypochondriacal symptoms (24). It is also possible for similar symptoms to generate different diagnoses from culture to culture (25). The interface of patients and physicians from different cultural backgrounds can create barriers to the effective diagnosis and management of mental illness, a scenario that is inevitable within multicultural societies such as the USA and the UK. Psychiatric diagnoses rely heavily on effective communication between patient and provider, a process that can be hindered when a patient and professional differ culturally, particularly with respect to the use of language. Some languages even lack specific words to describe negative emotional states (23). Language barriers can also lead to misinterpretation of the nature or severity of symptoms and can interfere with medication adherence and follow-up assessments (28). The importance of language and the use of language in describing emotional states is beyond the scope of this paper, although clinicians must be aware of differences in linguistic devices. Some research suggests that black and Hispanic bipolar patients are more likely than white patients to be misdiagnosed as having schizophrenia (29). Factors that are frequently responsible for these diagnostic errors include the misinterpretation of presenting symptoms related to thought content (hallucinations and delusions) and thought process (looseness of association, incomplete thoughts, and flight of ideas), as well as cultural differences between patients and their caregivers or therapists (30). Clinicians need to be aware that black and Hispanic patients are more likely to demonstrate symptoms of delusions and hallucinations during acute affective episodes, features that often lead to a misdiagnosis of schizophrenia (29). An additional factor is the Ôexplanatory modelÕ as discussed briefly earlier. It is likely that in some cultural groups the explanations of causation and outcome may be seen as non-medical or non-psychiatric thereby encouraging individuals to seek treatment from nonmedical resources or from folk and social sectors such as shamans, thereby prolonging the period between the onset of symptoms and help-seeking which will alter the prognosis (26). The data for cultural factors in bipolar disorders are scant. Another factor that deserves to be studied further is the possibility that patients and their caregivers may choose to identify different pathways and sources of help depending upon the threshold of symptoms.

Pathways to care

Filters model

Goldberg and Huxley described a model of access to health care access that identifies the sequential Ôreferral filtersÕ through which a patient passes to reach specialist care (31) (Table 1). The model assumes that patients generally initiate care with a general practitioner (GP) and are subsequently referred to psychiatric specialists and the effectiveness of this approach depends upon symptom presentation, the primary care physician’s ability to diagnose mental disorders, and his or her willingness to refer the patient to a specialist. Access to services is defined as the possibility of being seen in the services in a clinical context. Moodley and Perkins (32), in a study of 52 sequential admissions to inpatient psychiatric wards in London, found that a greater percentage of admissions (23.1%) resulted from police activity rather than primary care referral (15.4%). In a larger sample from South London, Bhugra et al. (33) noted that among black patients attending a psychiatric hospital the levels of dissatisfaction with primary care were much greater when compared to the concerns expressed by white patients. Of those black patients who entered the system through primary care, one-fifth were diagnosed with affective disorder where as more than half of white patients received a similar diagnosis. The average delay in primary care (across all diagnoses) was 22 weeks, irrespective of ethnicity. Thus it is not surprising that levels of dissatisfaction with primary care were high. It is not clear from these cross-sectional data whether the dissatisfaction led to delay or delay led to dissatisfaction. Among the causes for dissatisfaction the commonest was lack of availability of services in primary care. As noted above Bhui and Bhugra recently developed a revised version of the Goldberg and Huxley model that includes additional stages for primary care and community distress issues (34). Commander et al. (35) added a mental health act level in reporting their work from Birmingham. Bhui and Bhugra (36) then suggested the addition of another level to reflect the service area considered to be the most restrictive: forensic services. In this model several additional stages to reflect the appraisal, expression and presentation of distress at different levels of service were included. It is not surprising that different societies have different patterns of help-seeking, with the involvement of traditional healers in the systems of health care in some countries. It might be imagined that, among immigrant communities, similar patterns would emerge provided the alternative healers are available and accessible. The rapid ethnographic

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Bhugra and Flick Table 1. Pathways to care: expansion of the Goldberg and Huxley (31) model to address accessibility and service use for Black and Asian ethnic minorities. Reprinted with permission (36). Forensic services Level 6

6b* 6a*

Forensic services (referral from criminal justice system) Forensic services (referral from criminal justice system)

5b* 5a* 4b 4a

Inpatient admission (referral from criminal justice system or police)  Inpatient admission (referral from psychiatric services or GP)  Outpatient assessment completed, leading to inpatient or outpatient treatment or discharge  Outpatient assessment offered

3d 3c 3b 3a

Detection: referral to specialist services Detection: active management in primary care  Detection: non-active management and non-referral  Non-detection (although a disorder is present)

2b

Presentation to GP after patient appraisal where help-seeking from GP was considered appropriate  Presentation to GP, but not for subjective distress

Filter 4 Psychiatric services Level 5 Level 4

Filter 3 Action by GP Level 3

Filter 2 Presentation to GP Level 2

2a Filter 1 Appraisal Level 1

1b

1a

Community distress Appraisal as needing help from GP  Appraisal as needing help from another caregiver  Community distress Appraisal as not needing help

GP ¼ general practitioner. *Patients presenting at these levels may be referred under a section of the Mental Health Act.   Stages at which the care pathway could be augmented by involvement of voluntary sector, traditional healers, specialist services or liaison from psychiatrists.

assessment of newly immigrant communities to ascertain their preferred pathways to manage subjective distress is of value, but rarely conducted. Gray (37) has argued that the voluntary sector (nongovernmental organizations) may well be the most appropriate and least stigmatizing source of help for black patients. And yet this sector rarely figures in the strategic development of mental health services for black and ethnic minority patients, in the UK at least (38). The inclusion of the non-governmental and voluntary sector in the pathway model, health promotion and public education in schools, and the inclusion of places of worship and traditional healers can all usefully be involved in diagnosing and also managing distress among patients from other cultures. Such sources will also enable the clinicians to identify the sub-threshold symptoms. It is likely that patients may well seek help from complementary medicine sources if the illness is seen as mild. In an interview with a religious healer, the authors were told that he felt capable of identifying the threshold and was able to send ÔseriousÕ patients to the local psychiatric hospital.

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In a pathway into care study in the UK for the first onset of psychosis, Bhugra (22) found that South Asian and African Caribbean patients were more likely to use religious and faith healers as first port of call. Although the numbers were small, he observed that in these two groups psychiatrists could be the sixth or seventh port of call, having gone through five or six filters. In addition, African Caribbeans were more likely to be picked up by the police at an early stage of illness compared with the other two ethnic groups. It is entirely possible that patients and their carers may not choose primary care as an option and rely on more restrictive methods for help-seeking. Primary care practice

Approximately two-thirds of patients with depression receive care in a non-specialist setting, such as a primary care practice (39). Research indicates that some forms of bipolar disorder such as bipolar II and cyclothymia are more prevalent in primary care settings than previously thought (40). Patients

Pathways to care with less severe symptoms may be more inclined to seek initial medical help from a non-psychiatrist. At the same time, the more subtle manifestations of the disease may make diagnosis more difficult. In fact, studies have documented bipolar illness frequencies ranging from 10 to 30% among primary care patients who are being treated for depression or anxiety (39). It has been suggested that failure to recognize bipolar illness in this setting is the combined result of ineffective, crosssectional approaches to diagnosis coupled with an inadequate understanding among primary care practitioners of the bipolar II subtype (e.g., identification of hypomania) (41). Furthermore, many symptoms of bipolar disease overlap with those of other disorders that are characterized by Ômood swingsÕ, such as personality disorders, substance abuse, and impulse control disorders. This overlap makes diagnosis difficult for experienced psychiatrists, much less harried family practice physicians who have limited one-on-one time with each patient. South Asians in the UK are well known to present frequently in primary care, but not with symptoms of mental disorder (42). And even when they present to the clinicians with psychological symptoms they are liable to be given a physical diagnosis (43). Cultural and ethnic differences alone do not account for the differential detection, as South Asian GPs are shown to be poor detectors of morbidity among South Asian patients (44) thus indicating that ethnic matching may not yield more accurate diagnoses. Thus patientsÕ differing cultural appraisal of their problems as well as their preferred interventions may differ from those of clinicians. An explanation of the lower detection of mental disorders among South Asian patients by their health care professionals may well be that both patients and professionals share cultural beliefs which advocate the non-medical treatment of distress. There is clearly a role for strengthening the involvement of primary care health physicians in the assessment, detection and management of distress among black and ethnic minority groups. This also requires closer liaison with other pathway agencies in a two-way dialog around individual patients. Psychiatrists are already involved in liaison with primary care and partner agencies, and can motivate and facilitate the closer working of all pathway agencies for the benefit of patients. Continuity of care

Black patients in the UK have a higher representation in psychiatric hospitals, forensic units and are more often identified to be in need of psychiatric

help through crisis services and by the use of the mental health act. For example, Davies et al. (45) found that compulsory detention was more likely in patients from other cultures when compared with indigenous white majority patients even if the clinical diagnosis was identical. This finding has been replicated in the UK (46). Effective management of chronic psychiatric illness requires ongoing access to mental health care services. Diagnosis is for life and treatment for bipolar disorder is also often life-long. For patients with severe mental illness, this issue becomes particularly critical at the point of transition from institutional care to aftercare in the community. At this stage, the risk of care disruption is very high (47). Hospital readmission rates among bipolar patients have been reported to be as high as 90% within 2 years (48). Improved access to specialized outpatient care could have a significant impact on short-term and long-term outcomes in bipolar patients. Bauer et al. (48) found that providing easy access to clinic-based care for bipolar disorder patients decreased emergency room utilization and increased the intensity of drug treatment without an apparent increase in reported side effects. Their model included ongoing, easy access to a single primary nurse provider to enhance continuity of care and acceptance. Most studies of psychiatric continuity of contact in the USA, UK, and Australia have reported lower contact rates over time among ethnic minority groups compared with the national majority (49). The specific reasons for this are not completely known, but likely reflect the various cultural and ethnic issues described earlier. Health care system/policy barriers in the USA and UK

The policy barriers will vary across different nations. Here we illustrate some of the common problems between the USA and the UK, lessons from which may be applicable to other nations. Health care financing administration

A recent ruling by the US Health Care Financing Administration (HCFA) requires that any patient placed in seclusion or restraints, regardless of the clinical situation, must undergo a face-to-face evaluation within 1 h of the intervention. As a consequence, inpatient facilities are burdened with more frequent visits and interruptions, many of which are unnecessary. These situations impact the morale of staff clinicians and increase hospital costs to provide sufficient on-call coverage (50).

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Bhugra and Flick Emergency Medical Treatment and Active Labor Act

The Emergency Medical Treatment and Active Labor Act (EMTALA), enacted by the US Congress in 1986, may create unforeseen consequences regarding access to inpatient psychiatric care. Under this legislation, hospitals are only permitted to transfer emergency patients to other institutions if the original hospital does not have the capacity to provide further inpatient care. Likewise, a hospital cannot refuse receiving such a transfer if it possesses the capacity to provide inpatient treatment. While the intent of EMTALA was to ensure that non-desirable patients, including psychiatric patients, who are often more costly to treat, would not be refused care, this legislation may lead hospitals to reduce their capacity to provide inpatient care through staffing reductions. In effect, EMTALA has given hospitals a financial incentive to eliminate certain realms of care (e.g., psychiatric wards) and may be hindering, rather than facilitating, access to mental health care (50). These laws indicate the problems related to managing patients with chronic serious mental illnesses such as bipolar disorder. Regulations such as these are likely to produce further downward-spiraling effects on mental health care access by reducing morale and discouraging psychiatrists from inpatient work. Even more alarming is the possibility that some forms of mental illness may go untreated by any specialist (50). As mentioned earlier, the work of Angst and colleagues confirms the problems of diagnosing bipolar disorder. In addition, the pathway filters may stop patients seeking help and if engaged with services, the engagement may well be poor. The reasons for the poor engagement include different explanatory models, use of alternative therapies, and pluralistic approaches to help-seeking. Clinicians must therefore be aware of cultural models of bipolar disorders and the possibility that patients and their care givers may substitute alternative models along with complementary medication that may interfere with prescribed medications.

Health Parity Act (MHPA), which requires group health insurance plans servicing more than 50 members to offer annual and lifetime spending caps for mental health issues that are comparable to other medical illnesses. Following this, more than half of the state legislatures have passed their own parity bills that are even stronger than the federal MHPA. These acts have significant for other countries as well. Evidence gathered to date suggests that many parity mandates are weakly implemented and have little impact on the eventual utilization of mental health services (51). A recent study by Scheffler et al. (52) found broad discrepancies among mental illness definitions used in state parity laws. Furthermore, many such designations are formed with political and economic motives, rather than upon established clinical definitions. This is a significant issue with respect to access to care, because parity insurance is meaningless if a patient does not meet particular disease and/or severity criteria. Children and patients with subthreshold disorders commonly slip through the cracks of limited-parity legislation because of diagnostic limitations (53). UK National Service Framework for Mental Health

In 1999, the UK Government put forth its National Service Framework for Mental Health, which outlines national standards for mental health, including their goals and how they should be delivered and evaluated (54). This document has been criticized for its lack of specific considerations for bipolar patients (55), despite its admission that Ôone person in 250 will have a psychotic illness such as schizophrenia or bipolar affective disorderÕ (54). The National Service Framework sets seven standards, including: accessibility to services 24 h a day for 365 days a year. The accessibility therefore has to be not only geographic but also emotional in that the place where services are delivered should be acceptable to the patients and their careers. Medical/health insurance in the USA

Parity legislation in the USA

Based on disproportionate increases in mental health care costs during the early 1980s, cutbacks in related benefits became widespread. Many employers imposed new limits on inpatient days and dramatically increased patient contribution for outpatient care related to mental illness. To address this problem, a few state governments passed mental health parity laws in the early 1990s. In 1996, the US Congress passed the Mental

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Financial considerations can pose substantial barriers to health care access for any patient, particularly those with chronic health problems. Patients with bipolar disorder, in particular, face significant medical expenses related to the management of their disease. Studies have found that bipolar-related treatment costs are significantly higher compared with non-bipolar individuals and patients with other psychiatric and nonpsychiatric diagnoses, including depression and

Pathways to care diabetes (56–59). High hospitalization rates among bipolar patients are one factor responsible for much of these cost discrepancies (56, 58). Bipolar patients are also high medication users, which adds to overall treatment costs. One insurance claims review study found that bipolar patients received a mean of 15 CNS drug prescriptions annually (57). In addition, while lithium carbonate is available in generic form, many of the newer mood-stabilizing agents are still under patent and therefore are more costly. In a 1993 national DMDA survey, 15% of respondents indicated having failed on at least one occasion to use prescribed medication solely because of cost (16). Clearly, in the US accessibility and quality of insurance coverage is a critical determinant of access to mental health care. In the same national DMDA survey, 13% of respondents reported having no health care insurance at all, and 17% had only minimal insurance coverage. Fifty-nine percent of respondents were covered under a personal or family member employer, and 11% had private insurance (16). Coverage limitations for mental health issues can generate significant out-of-pocket expenses for the families of mental health patients, often to a greater extent than for patients with somatic illnesses. An economic study, based on a variety of mental health scenarios, attempted to model the magnitude of the out-ofpocket burden on the families of mental health patients. This analysis showed that, for a hypothetical family with annual mental health expenses of $35,000, the out-of-pocket burden would average $12,000. In comparison, a family with similar annual expenses for medical/surgical treatment would have out-of-pocket expenses of only $1,500 (60). Managed care insurance plans can further hinder mental health care access by imposing cumbersome authorization and referral procedures. Managed care systems, which were designed around the concept of providing cost-effective health care, are prone to restrictive cost-containment strategies such as limiting referrals to specialists and hospital admissions (61). In a 1997 analysis of 370 bipolar patients with private insurance, 85% reported belonging to plans with gatekeepers who restricted access to provider networks (62). Conclusions

This review has several limitations. First, it focuses on UK and USA experiences only. Secondly, the literature studied was in English language only. Thirdly, pathways into care are local and

influenced by local political and economic factors as illustrated above. In spite of these limitations, we believe that we have brought the findings together to indicate commonalities and differences across two systems of health care. Despite the current understanding of psychiatry and the availability of effective treatments, large numbers of patients around the world continue to suffer from bipolar disease and other mental illnesses. The reasons for this disparity are complex and numerous, and they preclude the implementation of any simple solutions. On many levels – patient, provider, health care system, governmental – any number of barriers can halt the progression of effective care. Further study of these barriers is warranted so that clinicians can identify and prioritize those areas with the broadest impact on patientsÕ access to care, while negotiating the various impediments to implementing those changes. These studies must also consider ethnic factors (including explanatory models) and should explore the potential impact of bipolar illness on the pathways patients and their caregivers choose, which in turn can influence the patient’s access to care. Only then can a culturally appropriate and sensitive model of care be delivered. While these issues require further elucidation, it is already apparent that one of the most significant and fundamental problems lies in reaching accurate and timely diagnoses of bipolar disease. Better education of the general public and the primary care community regarding the symptoms and consequences of bipolar illness could motivate patients to seek medical intervention and improve the likelihood of a successful diagnosis. Ongoing trends in health care delivery will no doubt continue to place a greater Ôpoint of entryÕ burden on primary care practitioners, and a greater understanding of bipolar illness by these providers is critical. Physicians must be aware of the potential for communication barriers when evaluating patients from different cultural or ethnic backgrounds, particularly those with whom they have significant language differences. Finally, from a national health policy and insurance provider standpoint, bipolar disorder needs to be considered as the serious illness it is, and appropriate safeguards to maintain access to qualified caregivers and reimbursement for related services must be implemented. Acknowledgements Thanks to Max Brady, Barbara Goworek, and Dr Roy Chengappa for their help in earlier drafts of this paper.

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