Closing the Treatment Gap for Mental Disorders - Vikram Patel, Mirja Koschorke, Martin Prince
Vikram Patel, Mirja Koschorke, Martin Prince
Acknowledgement
This chapter is adapted from a chapter to be published in the upcoming Routledge International Handbook of Global Public Health in 2010, co-edited by Dr. Richard Parker and Dr. Marni Sommer.
INTRODUCTION
A core concern of global mental health is the care of people with mental disorders particularly in low and middle income countries (LAMIC) where most of them live, but which enjoy only a tiny fraction of available global resources (1). Global mental health received considerable attention in the 1990s when the report on the Global Burden of Disease (2) highlighted the considerable burden of neuropsychiatric disorders compared with other conditions based on the health metric of the DALY (disability adjusted life year). Neuropsychiatric disorders cover a wide range of conditions affecting people across the life course (Table 1).
Table 1: Major mental disorders across the life course
| Childhood | Mental retardation Conduct and behaviour disorders (e.g. ADHD) Other neuro-developmental disabilities (e.g. autism) |
| Adolescence | Mood disorders (e.g. depression) Substance use disorders (e.g. alcohol abuse) |
| Adult | Mood disorders Psychotic disorders (e.g. schizophrenia) Substance use disorders |
| Older people | Dementia Mood disorders |
The subsequent World Mental Health report emphasized the robust relationship between mental health and social factors such as violence and poverty. The 2001 World Health Report 2001 was devoted to mental health. The WHO’s Commission on Social Determinants of Health reported robust evidence demonstrating the strong bi-directional relationship between social disadvantage and two mental disorders reviewed: depression in adults and ADHD in children. In spite of these initiatives and the substantial evidence of the large global burden of mental disorders, mental health remains one of the least prioritised areas of global health. Mental health is not included in any major global health program, there has been no equivalent of the Global Fund for TB, HIV and malaria, and no major new donors prioritise mental health. Recent estimates suggest that between 50 to 90% of people with severe mental disorders fail to receive even basic treatment; treatment gaps are evident in all countries, but are particularly large in LAMIC. Moreover, appalling neglect of human rights, often under the guise of hospital care, continue to blot the mental health care landscape in many countries. This astonishing ‘treatment gap’, in spite of the growing evidence on cost-effective interventions for many mental disorders is one of the greatest public health scandals of our times.
This chapter begins with a review of the evidence on the global burden of mental disorders and the interaction between mental health and other health conditions to make the case that ‘there is no health without mental health. The impact of mental disorders on the lived experiences of those affected and their families is described to demonstrate the enormous burden of stigma and discrimination in all countries. We report on the barriers for scaling up services for people with mental disorders, in spite of the substantial evidence of the cost-effectiveness of treatments and new evidence on the feasibility and effectiveness of task-shifting in mental health care. Finally, we describe new global initiatives which seek to scale up this evidence to close the treatment gap for mental disorders.
BURDEN AND IMPACT OF MENTAL DISORDERS
The absolute burden of mental disorder does not vary much between world regions. However, proportionately, mental disorders account for 9% of the burden in low income countries (LIC), 18% in middle income (MIC) and 27% in high income countries (HIC). This is because the burden of other health conditions is much greater in LICs, swelling the denominator. It has been suggested that the burden of mental disorders is underestimated in the GBD. First, according to the GBD, mental disorders account for 31.7% of all years lived with disability, but only 1.4% of years of life lost through premature mortality. However, each year at least 800,000 people commit suicide, 86% in LAMIC, and over half involving young people. Mental disorder is overwhelmingly the most important preventable factor. Non-suicide mortality is also elevated in psychosis, depression and dementia. The poor quality of general healthcare received by those with mental disorders may explain some of the excess mortality. Second, much of the burden of mental ill health may be mediated through complex interactions with other health conditions, including infectious disease, reproductive, maternal and child health.
The relationships between physical and mental disorder are complex. First, primary care personnel in LAMIC commonly encounter symptoms that are medically unexplained. Such medically unexplained somatic symptoms coupled with psychological distress and help-seeking is present in around 15% of patients seen in primary care. Those affected are chronically disabled, consult frequently and account for a high proportion of healthcare costs. Second, mental disorders are risk factors for the development of communicable and non-communicable diseases, and many physical health conditions increase the risk for mental disorder. For example, in population-based studies, depression is a prospective risk factor for cardiovascular diseases (CVD) including angina, myocardial infarction, and stroke. These associations are largely independent of CVD risk factors, despite the high incidence of hypertension, obesity, and smoking among those with mood disorders. There is also a substantial incidence of major depression after myocardial infarction and stroke. Depression increases the risk for onset of type II diabetes, and there is extensive comorbidity between diabetes and mood disorders. Around 15% of people with schizophrenia have type II diabetes, as a consequence of lifestyle factors, the metabolic effects of antipsychotic medication, and possible underlying disease-specific mechanisms. Those with mental disorder are also at risk for communicable diseases. Tuberculosis (TB) is more common among people with serious mental illness, and heavy drinkers. Up to 10% of HIV cases worldwide are attributable to injection-drug use. In the USA, those with chronic severe mental illness have a high seroprevalence of HIV (5-7%), and a clustering of behavioural risk factors. Among men who have sex with men depressive symptoms predict seroconversion, and alcohol use and depression predict unsafe sexual behaviour among those already infected. Living with a communicable disease increases the risk for mental disorder, through a variety of mechanisms. Infection with HIV is consistently associated with a high prevalence of affective disorder. Neurocognitive impairment can be identified in asymptomatic HIV infected individuals although severity is greater in those with symptomatic disease. Apart from the psychological trauma of the diagnosis, HIV infection and HAART treatment have direct CNS effects. MDR-TB is associated with particularly poor mental health attributed to loss of work and social roles, feelings of hopelessness and stigma. In Peru, the prevalence of mood disorders at diagnosis was 52% with a further substantial incidence of mood disorders and psychosis during MDR-TB treatment. In an inpatient study in Turkey, the prevalence of mood disorder was 19% for recently diagnosed TB, 22% for defaulted TB and 26% for MDR-TB.
Third, comorbidity complicates help-seeking, diagnosis and treatment, and affects the outcomes of treatment for physical conditions, including disease related mortality. Comorbid depression predicts reinfarction and death after myocardial infarction. Post-stroke depression is associated with poor functional outcomes and a 3.4 times higher mortality over 10 years. In diabetes, depression is associated with poor glycaemic control, complications, and death. In the US, chronic depressive symptoms were associated with increased AIDS related mortality and more rapid disease progression independent of receipt of treatment. Cognitive impairment in HIV is associated with greatly increased mortality independent of clinical stage and antiretroviral treatment. Schizophrenia complicates treatment and is associated with worse prognosis. The incidence of AIDS defining illnesses on HAART is increased among injection-drug users. A common underlying mechanism may be the poor adherence to treatment regimes that has been demonstrated for behaviour changes in cardiovascular disease, for oral hypoglycaemic therapy among people with schizophrenia, and for diet, exercise recommendations and oral hypoglycaemic medication among diabetics with depression. There is consistent evidence from developed countries that adherence to HAART is adversely affected by depression, cognitive impairment, and alcohol and substance use. There are fewer studies from LAMIC, but depression was associated with impaired adherence in Ethiopia. Alcohol use disorder has also been reported to be associated with delayed treatment-seeking, poor adherence to directly observed therapy and with unfavourable treatment outcomes for pulmonary TB and for MDR-TB.
Fourth, there may be a particular salience of mental disorders for women given important associations with reproductive, maternal and child health. Women are at heightened risk for mood disorders with a typical female to male gender ratio of 1.5 to 2.0. Mood and substance use disorders are all robustly associated with dysmenorrhoea, dyspareunia and pelvic pain. In Asian cultures explanatory models of reproductive and mental health experiences may enhance these associations; in a study in south India, the complaint of vaginal discharge was associated with mood disorder rather than reproductive tract infection. Maternal mental health may also have important implications for infant growth and survival. Maternal schizophrenia is consistently associated with pre-term delivery, low birth weight, still birth and infant mortality. Post-partum depression affects 10-15% of women. In developed countries there are adverse consequences for the early mother–infant relationship and for the child’s psychological development. In Asia, where physical development of infants is a particular problem, studies suggest an independent association between antenatal mood disorder and low birth weight, and associations between perinatal mood disorder and infant undernutrition at six months. Maternal depression reduces adherence to child-health promotion and disease-prevention interventions, for example immunisation. There is good evidence from developed countries and LAMIC that maternal depression is associated with sub-optimal breastfeeding.
STIGMA AND DISCRIMINATION
The stigma associated with mental illness contributes significantly to the burden of mental illness; in fact, subjective accounts of persons affected by mental illness testify that the effects of stigma and discrimination are often perceived as more burdensome and distressing than the primary condition itself. The term stigma refers to ‘a social devaluation of a person due to an ‘attribute that is deeply discrediting, and can be conceptualized as consisting of ‘problems of ignorance, prejudice, and discrimination. Discrimination, the behavioural consequence of stigma, contributes to the disability of persons with mental illness and leads to disadvantages in many aspects of life including personal relationships, education, work, housing, parenting, childcare as well as access to physical healthcare. In addition to experiences of direct discrimination from others, persons suffering from mental illness face several forms of structural discrimination, for example, manifest in the lack of resources allocated to the care of mental disorders and inadequate attention to the physical health needs of people with mental illness.
Paradoxically, mental health institutions and staff themselves often act as a source of discrimination. People with mental illness frequently report feeling patronized or humiliated by contact with mental health services; stigmatizing views are often held among mental health staff themselves. Human rights violations are often pervasive within mental health services. Recent examples of such violations include deaths linked to malnutrition and hypothermia in a psychiatric hospital in Romania, forced labour for inpatients in the Kyrgyz republic or the tragedy at Erwadi, India, where over 20 patients burned to death when a fire broke out in a healing shrine as they had been chained to their beds. In many societies where services are scarce, families resort to chaining and other inhuman practices to restrain relatives with mental disorders.
Some people with mental illness accept the negative beliefs and prejudices held against them and lose self-esteem, resulting in self-stigmatization leading to feelings of shame, hopelessness, a sense of being separate from society and social withdrawal. People with mental illness commonly expect to be treated in a discriminatory way (‘anticipated discrimination’) and may therefore try to hide their illness, be reluctant to seek help or stop themselves from applying for work, thereby reinforcing the cycle of dependency and disability.
Research on stigma has been carried out in many parts of the world. This evidence suggests that ‘there is no known country, society or culture where people with mental illness are considered to have the same value or be as acceptable as people who do not have mental illness. In a cross-sectional survey involving participants with schizophrenia in 27 countries, consistently high rates of experienced and anticipated discrimination were found. Negative discrimination was experienced by 47% of participants in making or keeping friends, by 43% from family members and by over a quarter in finding or keeping a job or in intimate relationships. Rates of anticipated discrimination were high; 64% reported they had stopped themselves from applying for work, training or education and 55% had stopped themselves from looking for a close relationship. High levels of ignorance and misinformation about mental disorders in the general public is a common finding. There appear to be links between popular understandings of mental illness, the perceived need to conceal the problem and help-seeking behaviour.
Stigma does not only affect persons suffering from mental illness but also families, mental health institutions and mental health staff. In one study carried out with family caregivers of people with schizophrenia in Chennai, India, over 50% worried that other family members would not be able to marry and that other people would avoid them and treat them differently if they knew about the illness. In a study from China, stigma was found to exert moderate to severe effects on the lives of family members in more than a quarter of the families.
Stigma and discrimination associated with mental illness are important both as a cause and as a consequence of the treatment gap for mental disorders. Stigma triggers a vicious cycle that leads to disadvantages in many aspects of life, adding thereby to increased levels of disability. It makes health decision makers give low priority to the needs of people with mental illness, and influences efforts and resources spent for the treatment of mental disorders. Feelings of shame and low self-esteem reduce self-efficacy and act as a barrier to recovery. Stigma influences access to and utilization of healthcare as people may fear being identified and labeled, therefore delaying or avoiding seeking help for their condition. Undesirable and often dehumanising conditions in many mental health institutions may add further to persons not taking up treatments that are available (103). All these factors adversely influence adherence to and effectiveness of treatments leading to poor recovery rates and maintaining disability levels, further reinforcing negative attitudes and discrimination.
The stigma attached to mental illness has been identified as ‘the main obstacle to the provision of care for people with mental disorders’ and the need to tackle this important issue has been emphasized as a key intervention to close the treatment gap. While there are promising initiatives to combat stigma both at local and at international level, much remains to be done to better understand and effectively address this complex phenomenon linked so closely to the success of programmes to improve mental health.
TREATMENTS OF MENTAL DISORDERS
A substantial evidence base testifies to the efficacy and cost-effectiveness of treatments for mental disorders; though much of this evidence is derived from high-income countries, there is now a growing evidence base from LAMIC. In summary, this evidence base shows that, for most mental disorders, a combination of pharmacological and psychological treatments is the most appropriate and cost-effective package of care. Amongst the pharmacological treatments, older, generic medications as just as effective as newer drugs and are, due to their much lower costs, more cost-effective. For many disorders, pharmacological treatments are indicated only for the most serious cases (for example, mood disorders). Amongst the psychological treatments, brief structured treatments such as cognitive-behavioural or inter-personal therapies are the most effective. There is ample evidence that treatment of comorbid mental disorder is highly effective in improving mental health and quality of life across a range of disorders including cancer, diabetes, heart disease and HIV/ AIDS. Structured treatment recommendations, antidepressants and cognitive behavioural therapy (CBT) can reduce “medically unexplained” somatic complaints, and costs.
The evidence-base on whether mental health interventions can improve physical disease outcomes is more mixed. Psychological interventions have been shown to improve diabetic control in Type 1 and type 2 diabetes. Pharmacological treatments are effective for depression, but do not improve glycaemic control or diabetic self-care. Antidepressants and CBT are safe and moderately effective treatments for depression post-MI (136, 137, 125), but do not reduce reinfarction rates or overall mortality. The evidence base for the effectiveness of antidepressants post-stroke is weak, both for prevention and treatment. However, one trial, with a nine year follow-up does suggest a sustained reduction in post-stroke mortality associated with antidepressant treatment. In the light of these findings, more intensive and flexible, patient-specific interventions have been advocated. In Peru, a non-randomised evaluation of a group psychotherapy intervention coupled with recreation, symbolic celebrations and family workshops was associated with a default rate of only 3.5% in a treatment cohort of 276 patients with MDR-TB. In, India a psychotherapeutic intervention based on behavioural modification techniques was associated with significant improvements in treatment completion and cure. Similar benefits were noted for TB clubs in Ethiopia. More research is needed, particularly with regard to HIV, where observational data suggests that antiretroviral adherence might be improved by antidepressant treatment, but the evidence base for the broad effects of psychosocial interventions is surprisingly limited. Interventions for child health and nutrition, such as infant-feeding advice, are mostly directed towards the mother, whose psychological well-being is therefore likely to be key to the success of these programmes. An RCT of a CBT-based intervention for depressed mothers integrated into the routine work of community-based primary health workers in rural Pakistan was effective in increasing immunization rates and reducing diarrhoeal episodes in their infants, as well as much improving the mental health outcome for the mothers.
BARRIERS TO SCALING UP EVIDENCE BASED SERVICES
In spite of the evidence and many previous initiatives to highlight the crisis in global mental health care, the unmet need for care for people with mental disorders remains astonishingly large. Even where treatments are available, these tend to focus on pharmacological interventions and on care within mental hospitals (rather than primary and community care models). There are several barriers to scaling up evidence based services: these operate in varying degrees in all countries of the world. Lack of resources is a major barrier; in Africa, for example, 80% of countries spend less than 1% of national health budget on mental health. The small overall size of health budgets makes the absolute figures even less adequate in the poorest countries. Although tax and insurance-based systems are all more appropriate than out-of-pocket payment, out-of-pocket payments are most commonly used in LAMIC. Yet, a relatively modest investment of US$2-3 per capita is all that would be needed to provide a basic package of mental health services (focusing on schizophrenia, bipolar disorder, and depression) in many of the poorest LAMIC (148).
The great scarcity of psychiatrists and other mental health specialists in experienced in most countries of the world; apart from the overall scarcity, these human resources are very inequitably distributed between and within countries. This scarcity and inequity is being further exacerbated by the migration of mental health specialists, both internationally from poorer to richer countries (150), and within nations, from poorer to richer regions and from public to private services. There are also issues of inefficiency: most mental health specialists work in very similar ways, regardless of the resource contexts they work in. Thus, face to face clinical work remains their predominant role, one which is incompatible with scaling up services to increase the pitiful coverage rates for basic mental health care (151). Furthermore, the concentration of scarce resources in many countries in large mental hospitals, with little or no investment in community or primary mental health care services, is another example of inefficient use of scarce resources. Other barriers include: the prevailing public health priority agenda and its impact on funding; the complexity of and resistance to decentralizing mental health services; challenges in implementing mental health care in primary care settings; and the lack of public health perspectives in mental health leadership.
CLOSING THE TREATMENT GAP
One of the most important advances in mental health care in recent years has been the demonstration of the safety and effectiveness of task-shifting in the delivery of efficacious treatments: this evidence provides the key to overcoming the huge barrier posed by the scarcity of specialist mental health human resources. Task shifting refers to the strategy of rational redistribution of tasks among health workforce team: specific tasks are moved, where appropriate, from highly qualified health workers to health workers with shorter training and fewer qualifications in order to make more efficient use of the available human resources for health (152). In recent years, a series of controlled evaluations have shown that psychological treatments or complex packages of care can be delivered by low-cost health professionals (lay people or community health workers), who are appropriately trained and supervised for depression, schizophrenia and dementia (153, 154, 155, 156, 146).
Mental health remains a low priority in most LAMIC. When mental disorders are seen as a distinct health domain, with separate services and budgets, then investing in mental health is perceived as having an unaffordable opportunity cost. The ideal setting of care should be within the primary health care model using strategies which are common to all chronic diseases: opportunistic case finding for early detection; a combination of pharmacological and psychosocial interventions, often in a stepped care fashion; long-term follow up with regular monitoring and promotion of adherence to treatment. A recent WHO-WONCA report has reviewed the key strategies and successful models for integration in primary care.
Modern classifications of mental and neurological disorders (MND), such as ICD10 have more than a hundred diagnostic categories. Even shorter, pragmatic classification, such as the primary care version of ICD10, contain more than 20 mental disorder diagnostic categories. Many of these categories can be merged, for health service interventions, based on similar epidemiological and clinical characteristics. One such model categorizes mental and neurological disorders (MND) into two broad groups: the common MNDs comprising mood and substance use disorders; and severe MNDs comprising the psychoses, epilepsy, strokes and dementia. This pragmatic classification of MND is the basis for designing the intervention framework of the District Mental Health Program (DMHP) in India. Thus, the management of common MND relies principally on early detection through routine or high-risk group screening of general or primary health care attenders. The management of severe MND relies principally on active case-finding and follow-up in the community and adequate provision for in-patient care for severe presentations.
SCALING UP SERVICES : A CALL TO ACTION FOR GLOBAL HEALTH
The sheer scale of unmet need for care was the key motivation for the publication, in 2007, of the landmark Lancet series on global mental health, a series of six articles produced independently by a group of global mental health leaders. The articles argued for scientific evidence as the basis for global advocacy and ended with a call to action for the scaling up of evidence based mental health services throughout the world and the implementation of policies protecting the rights of mentally ill people. These messages are relevant in all countries, not just in LAMIC: the principles set out in the Lancet global mental health series do not necessarily find expression in the developed world, for example, in the non-parity in mental health care compared to general medical care in most developed countries. Fortunately, local, regional and international initiatives have begun to materialize in response to this call to action. A prominent example is the World Health Organization’s Mental Health Gap Action Programme (mhGAP) (http://www.who.int/mental_health/mhGAP/en/index.html) which aims to identify and scale up cost-effective packages of care for eight priority conditions.
Beyond these initiatives, the call for action will also need a radical transformation in global health policy and practice whereby relevant governmental and multilateral agencies collaborate, intersectorally, with a range of stakeholders concerned with health care and human rights. A mental health legislative framework compatible with the UN Convention on Rights of People with Disabilities is an essential requirement in every country. There is a need to overcome resistance to decentralization of resources, especially among many mental health professionals and hospital workers. Mental health investments in primary care are important but are unlikely to be sustained unless these are preceded or accompanied by the development of community mental health services. There is a need to step-up mobilization and recognition of non-formal resources in the community - including community members without formal professional training, and people with mental disorders themselves and their family members - to take part in advocacy and service delivery. The voices of the mentally ill and their families – those most affected-- must be listened to. Mental health professionals, primary and community health practitioners, public health experts and policymakers must show solidarity with them. Several key questions will require systematic research study in order to inform the scaling up process. The mental health community overall has to act in concert with leaders in public health to ensure the inclusion of the subject of mental health on the global public health policy agenda, and the integration of mental health care into all pertinent levels of general health care.
The Movement for Global Mental Health, born on 10 October 2008, aims to build a coalition of individuals and institutions committed to improving the health care of people with mental disorders anywhere in the world. The ultimate aim of these the Movement is straightforward: provision of basic, affordable, care comprising generic medications, brief psychological treatments and attention to the social needs and human rights of people with mental disorders and their families. The Movement for Global Mental Health embodies the hope that “the substantial progress in scaling up of services for people with mental disorders will take its place alongside progress in HIV/AIDS treatment and maternal and child survival as one of the great public health successes of our times” (www.globalmentalhealth.org). It is only when the treatment gaps for people with mental disorders are systematically addressed on the basis of evidence derived both from biomedical disciplines and the lived experiences of people with mental disorders, will their rights and entitlements be realised at the standards which we should expect and demand.
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