Costs versus benefits and impact on life goals should be part of communication around anti-psychotic treatment duration in schizophrenia

Pai and Vella (2019) make an argument that clinicians should explicitly describe the need for long-term and possibly indefinite use of anti-psychotic medication for people initiating treatment for schizophrenia. They suggest that clinicians may not engage in this discussion in an attempt to reduce or avoid the distress that it might induce.

Whether or not long-term anti-psychotic medication is needed for all or most with a diagnosis of schizophrenia is a complex, contested question, which is the subject of ongoing research. The central problem is that, as Pai and Vella point out, the research evidence tells us that many but not all people with a schizophrenia diagnosis will benefit from anti-psychotic medication to live personally healthy and fulfilling lives. Currently, however, we are not able to predict who will and who will not receive that benefit. In a recent review in World Psychiatry cited by Pai and Vella, it was estimated that between 4% and 30% of people with schizophrenia who are stable on anti-psychotic medication could discontinue their medication without risk of relapse (Correll et al., 2018). The large range here indicates how much more research work needs to be done but clearly shows that not all people diagnosed with schizophrenia will need indefinite ant-psychotic treatment. This is knowledge that people recently diagnosed with schizophrenia are entitled to receive from their clinicians. This result also reflects the lived experience of people with psychosis in Australia. The Survey of High Impact Psychosis (SHIP) is a large prevalence study of psychotic mental illness across Australia and involved an in-depth analysis of factors influencing the daily lives of people living with psychosis. The SHIP study that found that 82% of the people it surveyed were currently taking anti-psychotic medication with 18% choosing not to take anti-psychotics (Waterreus et al., 2012).

Data from the SHIP study also reflects another complexity surrounding the long-term use of anti-psychotic medication with 57% of those on medication stating that it gave them a lot of relief from their symptoms, but 10% reporting that their medication gave them no relief. Furthermore, 61% of people described impairments in their daily life as a consequence of the side effects of their medication. This illustrates the importance of gaining an understanding of the risks/costs versus the benefits of anti-psychotic medication. This is the conceptual approach taken in the recent large-scale review described by Pai and Vella (Correll et al., 2018). It is also essential at the individual level. Pai and Vella also cite a large systematic review of service-user reasons for adherence and nonadherence to neuroleptic medication in psychosis (Wade et al., 2017). The authors highlight the review’s finding that a reason for non-adherence was the belief that medication was no longer required once symptoms had abated and use this as evidence that clinicians should tell patients of the need for long-term and probable indefinite antipsychotic treatment. However, a more nuanced reading of this review shows that lack of medication efficacy and the presence of side effects were identified as reasons for non-adherence in more of the studies than beliefs that medication was not needed after symptom recovery. In fact, the authors make the opposite conclusion to Pai and Vella and state that ‘decisions on neuroleptic use reflect rational decision-making processes in which personal costs and benefits of neuroleptic use are considered’ (p. 94). Furthermore, Wade and colleagues suggest that ‘it may be useful for clinicians to initiate dialogue with service-users around how neuroleptic use may fit with their hopes and expectations for treatment’ (p. 94). This leads to a further important issue regarding treatment for schizophrenia. That is, that treatment can involve a broader focus than the amelioration of positive psychotic symptoms. Again, the SHIP study is illustrative here (Waterreus et al., 2012). It highlights the importance for people diagnosed with psychosis of goals other than symptoms reduction, with social isolation, financial problems, lack of employment and poor physical health rated as more important challenges than symptom management. Similarly, in the above-described systematic review of service-user reasons for adherence and nonadherence many more life-goals than symptom reduction were identified as important. These included improvements in functioning, cognition and being able to leads a normal life. Non-adherence was identified when medication side-effects impacted these life-goals (Wade et al., 2017).

How the effects and side-effects of anti-psychotic medication impact all of a person’s life goals influence the decisional balance around taking medication over the long-term and should be included in the decision-making process between a person with schizophrenia and their clinician.