A Critical Literature Review of the Direct, Adverse Effects of Neuroleptics* *also known as antipsychotics Essential Information for Mental Health Consumers, Carers, Families, Supporters and Clinicians Dr Kate Dorozenko and Dr Robyn Martin School of Occupational Therapy and Social Work Curtin University May 2017 ACKNOWLEDGEMENTS We acknowledge and pay our respects to those who have lost their lives as a result of their experiences of mental distress, and the consumers who are impacted and at times, debilitated by the adverse effects of neuroleptic drugs. We acknowledge the experiences of families and other supporters who stand beside their loved ones while advocating for change. We would like to thank Lyn Mahboub for her expert input to this report. Lyn’s input as Lived Experience Consultant has ensured our work is of the highest standard and never loses the central focus on consumers and families. We appreciate your capacity to stretch and challenge us morally, ethically and intellectually. We acknowledge Deb Sobott, the National Mental Health Consumer and Carer Forum representative who has worked closely with us in developing the scope and design of the project. Your grace, generosity, intellect and humour remind us of why we are called to work in this area and in this way. Finally, we thank the National Mental Health Consumer and Carer Forum who have funded this research. We believe your willingness to commission research in an area that is politically sensitive demonstrates leadership. A Critical Literature Review of the Direct, Adverse Effects of Neuroleptics* *also known as antipsychotics Essential Information for Mental Health Consumers, Carers, Families, Supporters and Clinicians Dr Kate Dorozenko and Dr Robyn Martin School of Occupational Therapy and Social Work Curtin University May 2017 Contents Foreword 1 Executive Summary 3 Background 5 Glossary 7 The History of Neuroleptic Drugs 11 Summary and Discussion — History 12 What is the Efficacy of Neuroleptic Drugs? 13 Neuroleptics for Early Episode Psychosis 15 Summary and Discussion — Neuroleptics for Early Episode Psychosis 15 Neuroleptics for People Diagnosed with Schizophrenia and Psychosis 16 First Generation Neuroleptics 16 Summary and Discussion — Efficacy of First Generation Neuroleptics 16 Second Generation Neuroleptics 16 Clozapine 17 Summary and Discussion — Efficacy of Second Generation Neuroleptics 17 Comparing the Efficacy of First and Second-Generation Neuroleptics 18 Summary and Discussion — Comparing the Efficacy of First and Second Generation Neuroleptics 18 The Long Term Use of Neuroleptics 19 Other Studies 20 Summary and Discussion – Long Term Use of Neuroleptic Drugs 20 Overall summary and discussion — Efficacy 20 Commonly Used Neuroleptic Drugs 21 Neuroleptic Prescribing 28 Summary and Discussion — Neuroleptic Prescribing 29 Neuroleptic Polypharmacy 29 Summary and Discussion — Neuroleptic Polypharmacy 30 Concurrent Prescribing of Neuroleptics and Other Drug Interactions 30 Summary and Discussion —Neuroleptic and Other Drug Interactions 31 The Direct Adverse Effects of Neuroleptics 32 Extrapyramidal Side Effects 32 Tardive Dyskinesia 33 Summary and Discussion — Extrapyramidal ‘Side’ Effects 34 Metabolic and Cardiovascular Adverse Effects 34 Summary and Discussion — Metabolic and Cardiovascular Adverse Effects 35 Hormonal Effects and Sexual Dysfunction 35 Summary and Discussion — Hormonal Effects and Sexual Dysfunction 36 Anticholinergic Effects 36 Summary and Discussion — Anticholinergic Effects 37 Cognitive Adverse Effects 37 Summary and Discussion — Cognitive Adverse Effects 38 Structural Brain Changes 38 Summary and Discussion — Structural Brain Changes 39 Neuroleptic Malignant Syndrome 39 Summary and Discussion — Neuroleptic Malignant Syndrome 39 Mortality 40 Summary and Discussion — Mortality 40 Overall Summary and Discussion — Adverse Effects of Neuroleptic Drugs 41 Withdrawal and Discontinuation 42 Clinical Views 42 Rapid Onset Psychosis 44 Consumer Views 45 Supporting Withdrawal and Discontinuation 46 Summary and Discussion — Withdrawal and Discontinuation 46 Alternative Responses 47 The Soteria Approach 47 Summary and Discussion — The Soteria Approach 48 The Open Dialogue Approach 48 Summary and Discussion — The Open Dialogue Approach 49 Hearing Voices Approach 50 Summary and Discussion — Hearing Voices Approach 51 Harm Reduction Approach 52 Summary and Discussion — Harm Reduction Approach 53 Shared Decision Making 53 Summary and Discussion — Shared Decision Making 54 Conclusion 55 References 57 Appendix 1: Methods 68 Foreword Whilst it has been a privilege to write this foreword, I deeply regret the circumstances by which I have come to do so. My name is Debra and I am the mother of a son permanently injured by neuroleptic (antipsychotic) drugs. I am also a mental health advocate and I have been conceivable chance of recovery, it is imperative that very fortunate to be associated with and benefit from you cultivate an awareness. This review will start you working alongside my colleagues at Curtin University on that journey to knowledge and awareness and I in Western Australia. I am also a proud member of the implore you to take advantage of the information within. National Mental Health Consumer and Carer Forum Had I been privy to the findings within this review (NMHCCF) who supported my initial research into the 20 years ago, our lives would have looked very different dangers associated with neuroleptics by providing today and as such I cannot overstate its importance for funding to commission this Critical Literature Review. consumers, families, carers and clinicians. On behalf of the NMHCCF, Curtin University researchers, So how did my son and I end up where we Dr Kate Dorozenko, Dr Robyn Martin in collaboration with subsist today? Wasn’t my son in the system getting consumer academic Ms Lyn Mahboub have produced ‘treatment’? Surely the system provided expert this compelling review which examines the direct and collaborative care and treatment? Well, actually — no. adverse effects of neuroleptic drugs. The treatment my son did get was standard and by that So why was it important to commission such I mean an ever changing concoction of neuroleptics a review? If I were to answer that question in just one (polypharmacy) year after year despite rapid and visible sentence I could look no further than psychiatrist, deterioration in both his mental and physical state. Niall (Jock) McLaren’s statement; “In plain language, I was a bystander to his fate with the profession of if you have mental problems these days, you live in psychiatry having purposeful dominion over our lives. dangerous times”. The mortality rate of those diagnosed I anguished over my son’s pleas for help. I cried when with schizophrenia is significantly higher in people he begged me to not let them inject him. I was incensed prescribed neuroleptics, dying on average 19 years when they dismissed my requests for cognitive younger than the general population. The evidence behavioural therapy and ultimately, my heart broke provided in this review substantiates the fact that there when I witnessed his metamorphosis from a handsome are significant physical and psychological impacts young man full of hope to what he became. Whilst he associated with neuroleptic drugs. And yet, despite this remains my beautiful boy, today you will see him as crucial evidence, neuroleptics continue to be routinely an overweight, scarred old man who suffers the agony of prescribed and people continue to be subjected to the tardive dyskinesia, the torment of akathisia, with multiple debilitating direct adverse effects and potential mortality. suicide attempts and no longer being able to utter one coherent sentence. Nothing can render a mother more If I was asked to write this foreword even 10 years ago, wretched than watching her child’s life dissolve before as a family member, I would have complied with the her eyes whilst being completely and utterly powerless unwritten rules if I wanted to be taken seriously, I must to do anything. be graceful; I must not be combative; I must not show emotion and above all, I must not give voice to my It has been argued that the direct and adverse effects personal experience. I no longer occupy that innocent, associated with neuroleptics would result in most unsullied space and the world my son and I now inhabit drugs in general medicine being removed from is tragic and cruel. I don’t seek company in this world the market. I find this remarkable, particularly so given — I want you or the person you care for to pursue an this review not only provides us with a list of the most informed pathway to a vastly different world and in commonly prescribed neuroleptics in Australia but order to find that alternative route and have the best more importantly, exposes the dire adverse and direct effects associated with each of those neuroleptic drugs. Foreword 1 We have to ask ourselves, how is it neuroleptics continue And in conclusion, I would like to leave you with to be the mainstay treatment given the dire mental an excerpt from Professor Peter Gøtzsche’s and physical outcomes? Our unwillingness to embrace ‘Psychiatry Gone Astray’: alternative safe treatments in the past has created this calamitous and dire situation which has, in turn, I am not against using drugs, provided we know given birth to an industry that exists entirely to ‘fix’ what we are doing and only use them in situations the problems that we, ourselves, have created. where they do more good than harm. Importantly, the review states “it became evident quickly Psychiatric drugs can be useful sometimes for that the literature was dominated by the voices and some patients, especially in short-term treatment, priorities of the clinical researchers and practitioners.” in acute situations. But my studies in this area lead If the views of the professions are the ‘only’ views me to a very uncomfortable conclusion: Our citizens afforded weight in treatment decisions with the would be far better off if we removed all the perspective of those whose lives who are critically psychotropic drugs from the market, as doctors impacted being ignored, how is it possible to arrive are unable to handle them.