Duration of untreated psychosis: a global perspective

Abstract

Over the past thirty years, a substantial body of research has shown that many people experience long delays before receiving treatment after initial onset of a psychotic disorder. These delays are associated with poorer outcomes across multiple domains, over the short, medium and long term1, 2. This underpins initiatives to reduce the average duration of untreated psychosis (DUP) and to intervene early to reduce suffering and improve outcomes. In a recent meta-analysis2, marked variations in length of DUP were found by continent. The pooled mean DUP was 70 weeks in Africa; 49 weeks in Asia; 49 weeks in North America; 39 weeks in Europe; 35 weeks in South America; and 28 weeks in Australasia. Large variations also exist between and within countries. For example, a longer average DUP has been reported in North India (34 weeks) compared with South India (16 weeks)3. In the AESOP study conducted in UK, the average DUP was longer in London compared with Nottingham4. A complex set of factors and processes, at multiple levels, influence DUP in diverse settings and underlie these variations. Three levels for which there is substantive evidence are the societal (including health care systems), community, and individual ones. The structure and content of local health care systems are important in shaping DUP. The sources of support available, how accessible they are (e.g., distance, costs), and the extent to which they are consistent with popular beliefs about mental illness, all influence willingness to seek help and, therefore, DUP. In many low- and middle-income countries, local health care systems are characterized by a relatively small public (mental) health sector and a larger folk sector comprising a plethora of religious, spiritual and traditional healers. Relative to mental health services, healers are often more accessible, and their models of causation and treatment are more congruent with popular beliefs about the nature and origins of mental illness. It is, therefore, not surprising that, in many of these settings, healers are often the first source to which individuals and families turn when psychosis occurs. This can contribute to a longer DUP. For example, in a study in KwaZulu Natal, South Africa, earlier contact with a traditional healer was associated with longer DUP5. Conversely, in settings where mental health services are free and relatively well-resourced, DUP is generally shorter. In INTREPID6 – a programme of research in India, Nigeria and Trinidad – we found that DUP was shortest in Trinidad (median: 11 weeks), which has a free at point of contact public health system. How individuals and families make sense of and respond to psychosis is further influenced by the communities within which they live and by the social and material resources they have access to. There are multiple facets to this. First, attitudes toward, beliefs about, and knowledge of mental illness within communities and social networks can shape help-seeking and DUP. For example, community, family and internalized stigma can affect willingness to seek help from and engage with mental health services, prolonging DUP7. Second, there is evidence that the extent, nature and quality of community and family ties and relationships are associated with DUP: in particular, loose community ties, fractious and unsupportive family relationships, and social isolation can contribute to extended periods of untreated psychosis7. Third, there is evidence that household and individual material resources (e.g., income) are, in some settings, associated with DUP7. These factors clearly interlink with local health care systems, e.g., material resources may be less relevant where services are relatively cheap or free. We should, therefore, expect variation by setting in the extent to which indicators of social connectedness and resources are associated with DUP. Illustrating this, a study of samples in Mauritius and China8 found an association between low income and DUP in the Mauritius but not the China sample. Furthermore, high levels of community stigma may mean that individuals and families seek help outside of their communities, often travelling considerable distances. In other terms, the powerful effects of stigma may override the material costs and inconvenience of travelling to seek help. This is what we found at the Kancheepuram, India site of our INTREPID study6. Psychoses are clinically heterogeneous, and many studies have reported variations in DUP by mode of onset and presenting symptoms1. There is, for example, consistent evidence that an insidious mode of onset, i.e., the gradual emergence of symptoms over months, is associated with a longer DUP7. A gradual onset, by definition, constitutes a less sharp break with previous experience and behavior and is consequently less immediately visible. In settings where popular ideas about psychoses centre on outwardly visible disturbance and disruptive behavior, this process may be more pronounced, contributing to an even more prolonged DUP. Related to this, several studies have found associations between negative symptoms and a long DUP1. Conversely, an acute or sudden onset is associated with a shorter DUP. In Indonesia, for example, in a series of in-depth studies8, a rapid onset of psychosis was associated with a short DUP. Interestingly, in this context, initially seeking help from religious healers did not substantially lengthen DUP. Rather, if the help received was perceived not to be working, families quickly sought help from alternative sources, including mental health services. A further consideration is that, in many settings, a substantial – largely unknown – fraction of people with psychosis never come into contact with mental health services, or indeed any services. In the INTREPID study, we sought to identify individuals with psychosis in communities, i.e., not solely via mental health services. We found that, at point of identification, around 21% of patients at the Kancheepuram site had never sought help from any source6. However, most studies that report on DUP comprise samples identified via mental health services, including those in low- and middle-income countries. These, by definition, systematically exclude those who are untreated, and consequently underestimate the full extent of untreated psychosis in specific settings. There are several implications that follow from the above findings. First, it is possible to discern several interconnected factors that influence DUP at societal, community, interpersonal and individual levels. The precise ways in which these factors combine and interact in specific settings to influence DUP vary substantially by place, group and time. Second, the concept of DUP, particularly applied to settings with diverse and more plural health care systems, may be too linear and narrow to provide a meaningful primary target for intervention. In many settings, contact with mental health services is not necessarily an end point that signifies the beginning of sustained treatment. It is often one point on a winding, disjointed, sometimes circular trail, as individuals and families seek support and care from multiple sources. From this perspective, other priorities come to the fore. For example, the potential value of closer collaboration and integration between mental health services and other components of local health care systems, including spiritual and traditional healers9; the importance of identifying and engaging those who are never treated; and the need to improve the quality of mental health services and ensure sustained follow-up to retain in care those who do make contact, including the use of telepsychiatry to reach remote populations. In the end, reducing DUP is no use if the end point is poor quality services and care, with limited follow-up and rapid disengagement. All this also points to the need for more sustained programmes of in-depth research that can generate locally meaningful knowledge. This is essential to inform, in diverse settings globally, the development and implementation of more accessible, affordable and effective services and interventions for people with a psychotic disorder.

Topics & Concepts