In 2012, the Global Burden of Disease report published articles in The Lancet journal describing the most comprehensive assessment of the contribution of 291 specific health conditions to the burden of disease in 2010. A key requirement for the calculation of the burden of disease is the estimation of a disability weight, which is, in essence, a measure of the loss of health due to the condition.
In this study, disability weights were derived from surveys of the general population, attempting to capture a societal view of the health loss associated with a disorder. Based on these assessments, one condition led the pack ahead of the other 290: acute schizophrenia. This disorder was deemed to be associated with greater disability than any other, from terminal cancer to total blindness. Perhaps this should not be surprising for what can be more distressing, and feared, than losing control over one’s mind?
Schizophrenia is the most severe mental disorder for many reasons. Its symptoms can be terrifying not only because they can make the affected persons fear the world around them due to tormenting thoughts and voices, but even more so because these experiences feel totally real and no one else can empathize with or share them. Not surprisingly, the affected person’s behaviour and speech comes across to others as being strange or bizarre and the person is mocked or shunned.
This stigma contributes to the high disability weight attributed to schizophrenia. Traditional beliefs, for example, related to evil spirits or spells, only add to the fear and myths that shroud this disorder. But the truth is that today we know much more about this disorder, which tells us a different story.
We know that schizophrenia affects about one in 200 adults in the country, or about 4 million people. We know that schizophrenia is a brain disorder in which the symptoms are produced due to an interaction between genetic vulnerability and social and environmental influences, mediated finally by disruptions in neural pathways. We know that while hallucinations and delusions are the hallmark features of the disorder, many affected people are crippled by a profound loss of motivation and ability to feel emotions, less visible to the onlooker, but deeply disabling for the person.
We know that schizophrenia can run a relatively benign course in up to a third of those affected but, equally, at least a similar number will remain severely disabled by the symptoms. We know that people with the disorder die younger, mainly because their physical health needs are neglected, and through suicide. We know that the human rights of people with schizophrenia are routinely denied, the worst examples being when persons are chained or abused at home, in hospitals or traditional healing centres.
Most importantly, we know that a combination of medicines, psychological treatments and social interventions can transform the lives of those affected and their families. Despite this body of knowledge, when care is available, it is often limited to the treatment of acute episodes in mental hospitals and restricted to medicines alone, with little attention paid to the critically important needs for continuing care and psychosocial components, which ideally should be delivered at home, with active engagement of the family, and attention to livelihoods and social inclusion.
In short, if one were to consider the full range of evidence-based interventions as being part of the package of essential services for people with schizophrenia, my estimate is that less than one in 10 affected persons in India receive such comprehensive care.
One of the biggest challenges to addressing this dismal situation is the availability of locally appropriate community-based models of psychosocial care which promote recovery to live a productive and fulfilling life, and which can be delivered by affordable and skilled human resources. The Community Care for People with Schizophrenia in India project aimed to address this goal. The project, an international collaboration between three non-governmental organizations in India—Sangath, SCARF and Parvirthan—and researchers from Centre for Global Mental Health in London and National Institute of Mental Health and Neurosciences in Bangalore, and supported by the Wellcome Trust, culminated in the largest randomized controlled trial of a community-based intervention for schizophrenia in India.
Notably, the patients suffered from the most severe and chronic form of the illness and the intervention was delivered by locally recruited community-based lay workers, working in partnership with psychiatrists, in three settings in the country.
The findings, published last month in The Lancet, showed that the intervention produced modest reductions in the levels of disability, in particular in those patients who lived in rural areas and did not have access to regular psychiatric care before the trial. These results indicate that, at least in these settings, community-based care can enhance the benefits of routine outpatient medication-based care and can be delivered by appropriately trained and supervised lay people.
Combined with the evidence that such models of task-sharing are also effective for other mental disorders, the overall message is clear: India needs to invest in developing a cadre of community-based workers who can deliver psychosocial interventions for a range of mental disorders, working in partnership with families, primary care physicians and mental health professionals. This is the only way, and one which is backed by solid scientific evidence, to address the unacceptably large treatment gaps for mental disorders, including for the most disabling health condition, in India.
Vikram Patel works with the Public Health Foundation of India, Sangath and London School of Hygiene and Tropical Medicine.