In 2001, mental health became the focus

Transcription

1 Thara: Schizophrenia and Today s Youth Schizophrenia: Disabling Today s Youth Rangaswamy Thara, MD, PhD In 2001, mental health became the focus of worldwide attention when it was selected as the theme for World Health Day and the World Health Report 2001 by the World Health Organization. 1 Both of these events highlighted the importance of mental health care in developing countries and aimed to galvanize mental health services in many regions of the world. Schizophrenia is one of the most significant disorders of the mind, affecting 0.5-1% of the population. In North America, it has been described as the greatest disabler of youth. 2 Ubiquitous in its distribution throughout the world, schizophrenia affects both men and women, rich and poor, literate and illiterate. Although the ages years are the high-risk age for schizophrenia, children and the elderly also suffer from it. A leading public health problem, the personal and economic costs of schizophrenia can be staggering. The disability produced by schizophrenia is all encompassing, affecting personal care and hygiene, interpersonal relationships, social interactions, ability to work, attention, concentration, and memory. In the West, its costs to the health sector are enormous. In developing countries, where most persons with schizophrenia live with their families, the human and economic burdens are significant. The costs of schizophrenia can be direct or indirect. Direct costs are mainly due to hospitalization, medication, and other treatment-related expenses. In many countries, a large percentage of hospital beds are occupied by persons with schizophrenia, and this imposes a heavy burden on the health services. It was estimated that in 1990, the cost of schizophrenia to American society was $32.5 billion, of which $16 billion was spent on treatment and healthcare services. 3 The indirect costs include loss of productivity and time spent by care-givers. They are less tangible than Rangaswamy Thara, MD, PhD, is a psychiatrist by training and the Director of the Schizophrenia Research Foundation (SCARF), a non-profit organization at Chennai (formerly Madras) in India. SCARF is a WHO Collaborating Center for Mental Health Research and Training. Thara herself is a member of the expert advisory panel to the WHO and has championed the cause of mental disability in India. Vol. 6, No. 2, Fall

2 International direct costs but can significantly increase the economic burden of the disorder. Gaps remain in our understanding of schizophrenia. Though recent research has largely focused on establishing the genetic causes of the disorder, many details about its genetic transmission are unclear. Similarly, biological changes in the brain have been well enough documented that schizophrenia is now termed a disorder of the brain. The biological basis of schizophrenia has been investigated by neuropathological, neurochemical, and imaging studies. There is also increasing evidence that it is a developmental disorder and that some persons are more vulnerable to developing it. MRI studies have shown differences in brain volumes, and microscopic examinations have pointed to neuronal disconnectivity in persons with schizophrenia. 4,5 It may soon be discovered that highly specific changes in brain structure and function occur with schizophrenia. Biological factors notwithstanding, the psychosocial aspects of schizophrenia continue to exert enormous influence on various aspects of treatment and rehabilitation and perhaps even on the course and outcome of this disorder. Of these, family factors are particularly critical. This is of greater relevance in many countries, like India, where over 90% of the chronically mentally ill live with their families. Prevalence and Incidence of Schizophrenia Understanding the prevalence of schizophrenia has profound implications for the planning of policies and programs. There are no significant gender differences in the occurrence of schizophrenia, and it has always been held that the prevalence throughout the world is approximately the same. However, recently, Saha et al. looked at 1721 prevalence estimates from 46 countries. 6 Point (incidence at any point in time) and lifetime prevalence were 4.6 and 4 per thousand, respectively, which did not differ considerably from previous estimates. The study found no difference between males and females or urban and rural sites, but it did report a higher rate among migrants. However, the most striking feature of this report was the higher rates of schizophrenia reported in developed countries. The global incidence of schizophrenia is around 0.5 per thousand. The debate over whether it differs in developing countries has yet to be resolved, with contradictory opinions being observed by different researchers. 7,8 A recently published systematic review of the incidence of schizophrenia showed that the distribution of incidence rates around the world is asymmetrical, with many high rates skewing the distribution. 9 Based on the central 80% of rates, the incidence of schizophrenia varies in a five-fold range (between 7.7 and 43.0 per 100,000). Males have a significantly higher incidence of schizophrenia compared to females (median male to female risk ratio = 1.4). A study done in Chennai (formerly Madras), India found a higher incidence of schizophrenia in the urban slums when compared to the non-slum areas, which had implications for planning services. 10 There remain, however, certain populations that seem to be at greater risk of developing the disorder and who, therefore, 82 Harvard Health Policy Review

3 Thara: Schizophrenia and Today s Youth require closer surveillance and support. They are migrants, those living in very deprived environments, some ethnic minorities, and children with one or both parents afflicted by schizophrenia. Signs and Symptoms Signs and symptoms have been consistent in most parts of the world. Symptoms such as hallucinations, delusions, disorders of thinking, neglect of self-care and personal hygiene, and difficulties in socialization are all hallmarks of schizophrenia. However, the content and nature of these symptoms may vary across cultures and societies. While paranoid delusions in Western countries might involve the CIA, space ships, or computers, those of a person living in Zambia might concern black magic, witchcraft, etc. Aggression is reported to be more characteristic of Western patients than of those from developing countries. Although the etiology of schizophrenia may be biological, many of the symptoms, patients reactions to them, and the causal theories attributed to them (also called explanatory models) are to a great extent molded by society and culture. Course and Outcome The course of a particular disorder is its pattern of episodes of improvement and decline, while the outcome is its end point. In the earlier part of the 20th century, it was believed that no improvement was possible in schizophrenic patients; for this reason, Bleuler, a Swiss psychiatrist, called it dementia praecox, implying a progressive course of the disorder. However, subsequent observations and research have shown that this is not the case. International, multi-centric studies have revealed that a number of persons with schizophrenia have experienced favorable outcomes and are able to go back to work, get married, and lead productive and meaningful lives. 11,12 The availability of effective medication, better community care, and increasing awareness about the illness seem to have improved the outcome in a substantial number of patients. It is necessary to remember that, unlike that of many physical disorders, schizophrenia s outcome is multi-dimensional. The following must be considered when assessing outcome: clinical symptoms and improvement; social functioning of the person, especially his ability to relate with people in his environment; and performance at work, including paid jobs, house work, studies, and work in sheltered environments. Sometimes parameters such as quality of life and extent of burden on the caregivers are also considered. The major International Pilot Study of Schizophrenia showed that people in developing countries had better outcomes than those in developed nations. 13 Although there has been some replication of this finding, it is still unclear as to what factors actually lead to this better outcome. Culture, family emotions, coping and tolerance, and a less competitive environment have all been hypothesized but are yet to be conclusively proven by rigorous research methods. A twenty-year follow-up of 90 patients with schizophrenia who had had their first episode of illness showed that only five of the original 90 persons with schizophrenia Vol. 6, No. 2, Fall

4 International included in the study were continuously ill. Social functioning was good in patients, and many held jobs. 14 This may have been due to greater family support and community tolerance, better job opportunities in the unorganized sectors of employment, especially in the rural areas, and the role family members play in ensuring regular intake of medicines. Being female, starting treatment early, experiencing acute onset of illness, having a cohesive family, having a better adjusted personality before the onset of the disease, and being married are some of the factors which have been associated with good outcome in schizophrenia. Being male, unmarried, or unemployed; obtaining delayed or irregular treatment; having a family history of psychoses or poor social and work functioning before the illness; using alcohol or other addictive drugs; or living in an unhealthy family environment all seem to contribute to a poor outcome. Death rate Persons with schizophrenia have shorter life expectancies than the general population. Elevated suicide rates are also responsible for increased mortality. Premature deaths in schizophrenia are due to infections and disorders of the cardiac, endocrine, and respiratory systems. Studies from different countries have shown an increased mortality due to natural causes. It can be concluded that on an average, schizophrenia reduces the life span by about 10 years. 15 Risk factors A number of risk factors for schizophrenia have been identified. One of the most important is genetic. One in ten patients with schizophrenia have an affected family member; the risk increases with the closeness of the relationship. A number of genes have been implicated in the transmission of schizophrenia, but no steadfast conclusions have been reached. 16 Migration and living in a new environment have been consistently associated with increased schizophrenia. 17 More recently, an increased number of birth complications, infections during pregnancy, and the use of addictive substances such as cannabis during adolescence have been associated with the development of schizophrenia. Disability and burden Schizophrenia causes considerable disability in a person s functioning. Self-care; care of personal space and environment; interpersonal relationships; ability to show emotions and carry on meaningful conversations; ability to find and keep jobs; and faculties such as attention, concentration, memory and other cognitive functions may all be affected. It is one of the five neuro-psychiatric conditions accounting for a huge part of the global burden of disease. The WHO, with other partners around the globe, has revised the classificatory system for disabilities (ICIDH) and renamed it as the International Classification of Functioning (ICF). Derived from this is the Disability Assessment Schedule, which measures disability in several spheres and has been extensively used in schizophrenia research. Several other instruments that measure disability and functioning are also being used. The measurement of disability 84 Harvard Health Policy Review

5 Thara: Schizophrenia and Today s Youth is critical not only for certifying it but also for planning welfare and care programs for the mentally disabled. The fact that mental disability is not visually apparent, as in the case of many other disabilities, has resulted in the marginalization of mental health. The problem is compounded by the fact that the mentally ill are not as articulate as other disabled groups. Unlike in the West, where people with schizophrenia are one of the major beneficiaries of the state welfare scheme, this disability has not gained its rightful recognition in many developing countries. For example, in India, mental disability was included in the Persons with Disabilities Act for the first time in Nonetheless, the act has yet to transform into policies and programs that reach the mentally disabled. 18 Compounding this inadequacy is the fact that medical insurance in many of these countries does not cover treatment of mental illness, even serious illnesses such as schizophrenia that often necessitate prolonged admission and medication. A number of private sector businesses that normally support expenses incurred by ailments of the body do not reimburse expenses for the treatment of schizophrenia. Thus, the burden is borne entirely by the families of patients. This burden is not purely economic, but also includes physical stress and strain and emotional sequelae such as depression, anxiety, and care-giver burn-out. The families of persons with schizophrenia require considerable support from mental health professionals, which is often not forthcoming. Stigma and discrimination Like leprosy, schizophrenia has been heavily stigmatized. While the stigma attached to leprosy has been reduced in many developing countries, largely due to effective treatment and early detection as a result of massive awareness and educational programs, schizophrenia remains a stigmatizing affliction. There are several reasons for this. A host of stereotypes such as aggression, contagion, unpredictability, and inevitable heritability exist. This is compounded by the reality that a small percentage of persons with schizophrenia do not improve and remain considerably disabled all through their lives, despite treatment. Studies done at the Schizophrenia Research Foundation in India have documented the intensity of stigmatization experienced by persons with schizophrenia and their families. One such study, conducted in 1997, included 159 consecutive out-patients of SCARF. 19 All of them lived with their families in their own homes. The study used the Stigma Scale of the Family Interview Schedule, which has 14 questions dealing with difficulties with neighbors; fear regarding getting married; fear of revelation of mental illness; and shame, embarrassment, guilt, and depression. Females were stigmatized more, and female care-givers perceived it more. Stigma was also more intense if the illness was of shorter duration, if it occurred in a younger patient, or if the family and patient had no explanation to offer for the illness. The consequences of stigma were severe and included differential treatment by society; a paucity of marriage proposals (marriages in India Vol. 6, No. 2, Fall

6 International Despite wide recognition of the importance of national mental health policies, data collected by WHO reveals that 40.5% of countries have no mental health policy and that 30.3% have no programs. Even in countries that have drawn up policies (India, Nepal, etc.), implementation has been far from satisfactory. Lacunae exist at various levels: undergraduate education, inadequate basic training of doctors working in primary health centers, and lack of medication at these centers, for example. For conditions such as schizophrenia, resources for rehabilitation are meager to say the least, and those that are available are concentrated in urban areas. Mental health policy is commonly situated within a complex body of health, welare still largely arranged by families); discrimination at work and by family; and feelings of shame, sexual harassment, and social exploitation. A number of programs have been launched by several international organizations to address this issue. For example, the World Psychiatric Association has a number of countries working for its Open the Doors program, of which SCARF is the Indian co-ordinating center. Pathways to Care Both the infrastructure and personnel of mental health services are grossly inadequate in many parts of the developing world. Studies of care-seeking patterns have shown that spiritual and traditional healers are the primary sources of treatment for psychotic disorders in rural areas of India. 20 This is also the case for many African and South American nations. Causal attributions for mental disorders have been studied in China and India. 21,22 While urban populations hold a medical model of causation, mixed models are common in rural areas. Magical, religious fatalistic, and biological models often coexist, resulting in the patient being exposed to a myriad of interventions ranging from being chained, in some centers of religious treatment, to receiving the newer antipsychotic medications. In this context, it is relevant that families often make decisions regarding the site, nature, and duration of treatment; hence, the models and beliefs the family holds are critical. This is why mental health professionals in this part of the world must spend significant amounts of time with families increasing their awareness of and sensitivity to various mental health issues. Community Mental Health Deinstitutionalization, the closure of mental hospitals resulting in patients being sent back to their communities for care, was a major issue in planning mental health services in Western nations in the 1970s. The challenges facing developing nations, where most mentally ill people live with their families and few institutional psychiatric beds exist, are different. In these countries, the availability, accessibility, and acceptability of these services need to be addressed. The presence and use of alternative healing systems in rural regions of Asian and African countries should be kept in mind while planning services for this population. Where are the policies? 86 Harvard Health Policy Review

7 Thara: Schizophrenia and Today s Youth fare, and general social policies. The social and physical environments in which persons with mental illness live should be taken into account when formulating mental health policies. Intersectoral collaboration between the government departments responsible for promoting and protecting health, welfare, education, employment, maintenance of law and order, children, adolescents, women, and elderly is ideal. While it is recommended that consumers of mental health services should also be involved in the planning and implementation of the polices and programs, it is not clear at this time how many countries actually do this. In countries like India, where traditional and religious healers are one of the major mental health service providers, it is prudent to obtain their input, as well. Unfortunately, there is a lack of awareness about mental disability among policy makers. Roderigo et al. have quoted a policy maker in south Asian country as saying, There are no mentally ill people in my electorate please do not talk about this problem of Western countries. We have people with physical disabilities, but none with mental disability. 23 Sweeping statements such as this one augur badly for the future of mental health in many nations. More than three decades ago, an expert committee of the WHO commented thus: Psychiatrists and other mental health workers cannot expect to realize their plans for improving mental health services unless these plans are recognized as valid by their governments, and given financial and administrative support. It is, however, very seldom those medical or lay administrators in national ministries are either well informed about mental health problems or motivated to do anything about them there must be within each country s health ministry, a unit especially concerned with mental health service planning and administration. Even after 30 years, the scenario has not appreciably changed. In India, for instance, the Ministries of Welfare and Health debated for nearly three years as to who should handle disability caused by schizophrenia and other mental disorders. For disabling conditions like schizophrenia, a network of services in the government, NGO, and private sectors need to be in place and adequately linked. Only then can issues such as medical treatment, psychosocial rehabilitation and support, family support, housing, employment, stigma, and human rights and discrimination be effectively dealt with. However utopian this may sound, it is essential for all developing countries to work towards this situation. Only then will comprehensive care for people with schizophrenia and their families become a reality. References 1. World Health Organization (2001). The World Health Report 2001: Mental Health: New Understanding, New Hope. 2. Schizophrenia: Youth s Greatest Disabler. www. schizophrenia.ca/survey.pdf. Schizophrenia Society of Canada, June D.P. Rice & L.S. Miller. The economic burden of schizophrenia: conceptual and methodological issues and cost estimates. In Moscarelli M, Rupp A & Sartorius N eds. Handbook of Mental Health Economics and Health Policy, vol.1, Schizophrenia. Wiley: New York, D.R. Weinberger & B.K.Lipska. Corticla maldevelopment, antipsychotic drugs and schizophrenia: a search for common ground. Schizophrenia Research, 16 (1995), M.F. Green. Schizophrenia Revealed. Norton Publishers: New York, S. Saha, D. Chant, J. Welham, & J. McGrath, A systematic review of the prevalence of schizophrenia. Vol. 6, No. 2, Fall

8 International PLos Medicine. May 2005, vol. 2, issue 5, World Health Organization. Schizophrenia: An international follow-up study. Chichester: Wiley, World Health Organization. Report of International Pilot Study of Schizophrenia. Geneva, WHO, N. Sartorius, A. Jablensky, A. Korten, G. Ernberg, M. Anker, J.E. Cooper, and R. Day. Early manifestations and first contact incidence of schizophrenia in different cultures: A preliminary report on the initial evaluation phase of the WHO Collaborative study on determinants of outcome of severe mental disorders. Psychological Medicine Nov.16 (4), (1986) N. Jablensky, N. Sartorius, and G. Ernemberg, Schizophrenia: manifestations, incidence and course in different cultures: A WHO ten-country study. Monograph. Psychological Medicine, supplement 20, (1992) J. J. McGrath. Myths and plain truths about schizophrenia epidemiology--the NAPE lecture 2004, Acta Psychiatrica Scandinavica. Jan 111 (1) (2005), S. Rajkumar, R. Padmavati, R.Thara, and MS Menon, Incidence of Schizophrenia in an urban community in Madras. Indian Journal of Psychiatry, 35 (1), (1993) N. Sartorius, A. Jablensky & R. Shapiro. Two year follow-up of patients included in the WHO IPSS. Psychological Medicine, 1977, 7: R. Thara Twenty year course of schizophrenia: The Madras Longitudinal Study. Canadian Journal of Psychiatry, August Vol.49. No. 8 (2004). 15. Harris EC, Barraclough B. Excess mortality of mental disorder. Br J Psychiatry Jul;173: Review 16. G. A. Preston & D. R. Weinberger. Intermediate phenotypes in schizophrenia: a selective review. Dialogues in Clinical Neuroscience 2005; 7(2): K. Dean, E. Bramon, & R. M. Murray. The causes of schizophrenia: neurodevelopment and other risk factors. Journal of Psychiatric Practice Nov; 9(6): R.Thara and T. N. Srinivasan. How stigmatizing is schizophrenia in India? International Journal of Social Psychiatry. 46(2) summer (2000): R.Thara Measurement of psychiatric disability: a commentary. Indian Journal of Medical Research: 121, (June 2005), R. Padmavati, R.Thara, and E.Corin. A qualitative study of religious practices by chronic mentally ill and their caregivers in south India International Journal of Social Psychiatry. 51,2, (June 2005) L.H. Yang, M.R. Philips, and D. M. Licht Causal attributions about schizophrenia in families in China: expressed emotion and patient relapse. Journal of Abnormal Psychology, 113 (2004) E. Corin, R. Thara, and R. Padmavati In quest of cross-roads in intercultural studies of schizophrenia.. L Evolution Psychiatrique. Vol. 69,(2004), E. K. Roderigo, D. Bhugra, P.DeSilva. Mental Health Planning in developing countries. Handbook of Psychiatry- a south Asian perspective Byword Viva Publishers Private, limited. (2005) New Delhi. 88 Harvard Health Policy Review