The Early Stages of Schizophrenia by Robert B. Zipursky, S. Charles Schulz (American Psychiatric Publishing) Our understanding of schizophrenia has changed dramatically over the past few decades. The introduction of atypical antipsychotic medications, shifts in social policy, and new research findings have had a profound impact on current thinking about the expected clinical outcomes of schizophrenia. Up until the late 1950s, patients with schizophrenia could be expected to spend much of their adult lives institutionalized. A very large majority of people with schizophrenia can now expect to live their lives in their communities. Research programs were developed in the 1980s to study patients at the beginning of their illness in order to characterize the factors that determine clinical outcome in schizophrenia. What has become clear is that a very high percentage of patients receiving treatment for their first episode of schizophrenia will achieve a full remission of symptoms, with many returning to very good levels of functioning. These findings have renewed hope that early intervention may have the potential to dramatically improve the long‑term outcome of schizophrenia. Yet despite these reasons for optimism, early recognition of psychosis and a full, coordinated approach to treatment have not been the norm. It is the purpose of this book to assemble for the first time these new studies on the early stages of schizophrenia and to describe the clinical approaches likely to facilitate the fullest degree of recovery.
To fully understand the issues involved in the early stages of schizophrenia, it is necessary to be familiar with what schizophrenia looks like early in its course and what the spectrum of outcomes is likely to be. The first section of this book, "Early Intervention, Epidemiology, and Natural History" provides this background.
Chapter 1, "`Closing In': What Features Predict the Onset of FirstEpisode Psychosis Within an Ultra‑High‑Risk Group?" by Patrick McGorry, Alison Yung, and Lisa Phillips, describes the authors' innovative work in characterizing the prodromal phase of schizophrenia and conceptualizing models for treatment at this stage. Schizophrenia is rarely an illness of acute onset; rather, most patients experience a prodromal phase of increasing social isolation, deterioration in functioning, and slowly evolving psychotic symptoms that may last for many months and, more often, years. There is very frequently a prolonged delay between the onset of psychotic symptoms and treatment. McGorry and his colleagues in Melbourne, Australia, have had an enormous impact in increasing our understanding of this phase of the illness and in initiating discussion about the possibility of intervening at this point. What has been unique about their contribution has been the focus on those individuals who appear to be on the very cusp of becoming psychotic. In the past, discussion of intervening with individuals at risk has been stifled by concerns about the low specificity of predictive factors and the risk of identifying false‑positive cases. Recognizing that many patients who go on to develop schizophrenia are highly symptomatic in the months and years before they become acutely psychotic and often seek treatment for these symptoms, Dr. McGorry and colleagues have catalyzed a rapidly growing international effort to develop effective early intervention strategies to prevent the onset of psychosis.
Chapter 2, by Evelyn Bromet, Ramin Mojtabai, and Shmuel Fennig, describes "Epidemiology of First‑Episode Schizophrenia: The Suffolk County Mental Health Project," a study of first‑episode psychosis. The fundamental issue that this study addresses is: "What is the long‑term outcome after a first episode of psychosis?" The answer to this question has eluded psychiatrists throughout the past century. Even to this day, it is difficult to know what the long‑term outcome from schizophrenia really looks like. As Dr. Bromet and her coauthors make clear in this chapter, much of the uncertainty can be traced to variability in study designs. Epidemiological studies that involve an unbiased cohort of patients at the beginning of psychotic illness are ideal for understanding the long‑term course of schizophrenia. For the past 10 years, Dr. Bromet and her colleagues have been conducting such a study on Long Island, New York. Their study provides invaluable knowledge about the distribution of psychiatric diagnoses among patients with a first episode of psychosis, the stability of these diagnoses over time, and the outcome from these diagnoses over time.
Chapter 3, "Investigating the Early Stages of Schizophrenia: The Hillside Prospective Study of First‑Episode Schizophrenia" by Jeffrey Lieberman, summarizes the results of the monumental research in this area conducted by Dr. Lieberman and his colleagues at the Hillside Hospital on Long Island, New York, beginning in 1986. The results from this study have had enormous impact on our understanding of schizophrenia and its treatment and provide the foundation for much of the current clinical and research work in this field. Many of the findings in this study have profound implications for the treatment of first‑episode patients: the long duration of untreated psychosis, the large percentage of patients who achieve a full remission in symptoms, the diminished treatment response in subsequent episodes, the very high rates of relapse in the first 5 years of follow‑up, and the linear increase in the risk of tardive dyskinesia beginning in the first years of treatment. These finding have had‑and will continue to have‑enormous impact on our thinking about early intervention, maintenance treatment, and optimal pharmacologic management of first‑episode patients.
The second section of this book, "Management of the Early Stages of Schizophrenia," provides an overview of treatment strategies for helping patients experiencing their first episode of psychosis. To work effectively in this field, clinical care needs to take place in the context of a clear understanding of how this illness affects patients and their families.
Chapter 4, by Robert Zipursky, discusses the "Optimal Pharmacologic Management of the First Episode of Schizophrenia." This chapter draws heavily on the clinical experience that Dr. Zipursky and his colleagues
have accumulated over the past 8 years in the First Episode Psychosis Program at the University of Toronto. The pharmacologic management of patients with a first episode of schizophrenia must go beyond discussion of "what drug in what amount?" A framework for the optimal use of antipsychotic medications is provided. Dr. Zipursky and his colleagues have demonstrated that many patients in their first episode of psychosis respond very well to relatively small doses of typical and atypical antipsychotic agents. The impact of these findings have been greatly strengthened by the demonstration that these small doses lead to substantial levels of dopamine D2 receptor occupancy, as demonstrated in patients using positron emission tomography. What this means clinically is that it is now possible‑and should, indeed, be expected‑that first‑episode patients can be effectively treated with few, if any, medication side effects. This represents a dramatic change in clinical practice over the past decade. Determining which medications will lead to the fullest degree of recovery remains a challenge for future research.
Chapter 5, by Elizabeth McCay and Kathryn Ryan, provides an introduction to the topic of "Meeting the Patient's Emotional Needs." Schizophrenia remains among the most poorly understood and highly stigmatized of all illnesses. The process by which patients adapt to becoming ill with schizophrenia is critically important to understand. We expect a great deal from these young patients whose grip on reality has been disturbed. We expect them to accept a medical diagnosis, accept medications, and comply with our recommendations in the long term. It is imperative that we understand the experience of our patients so we can find ways to engage them in both the acute and the ongoing treatment required to give them the best chance of recovery. Although the complex symptoms of schizophrenia contribute directly to the limitations in functioning that many patients experience, it is equally clear that poor psychological and emotional adjustment to having schizophrenia can affect the patient's long‑term level of functioning and quality of life. Being diagnosed with schizophrenia may have a devastating impact on the person's sense of self. The authors describe the process of "illness engulfment" that results when patients' self‑concept is increasingly organized around the illness and the patient role. Strategies for minimizing the trauma of becoming psychotic and the process of illness engulfment are described based on the authors' review of the literature as well as their research findings and their extensive clinical experience.
Chapter 6, by April Collins, reviews the literature on "Family Intervention in the Early Stages of Schizophrenia." Because most patients are in their teenage or early adult years when they become ill with schizophrenia, they are usually still very closely involved with their families. This means that engaging the patient in treatment almost always involves engaging the family as well. Furthermore, efforts to assist patients in coping with their illness need to be complemented by efforts to support the families in which they function. As April Collins makes clear in her historical overview, family involvement in the treatment of patients with schizophrenia has most recently focused on strategies for minimizing relapse through intervening with families with high expressed emotion. Family education programs, developed in part to neutralize this effect, are by now well‑established modalities of treatment in the management of schizophrenia. It is critically important that we not overlook the subjective experience of family members. Coping with an adult child who has become psychotic, who has been diagnosed with schizophrenia, and who faces an uncertain future that may involve a high level of disability represents a challenge of unfathomable proportion. The issues and challenges facing the parents of a young person just diagnosed with schizophrenia are often quite distinct from the issues parents face when the illness has persisted for many years. Family support groups that have been developed for the support of families coping with chronic schizophrenia may be inappropriate for many families coping with a first episode, because these families have very special needs. They need to be actively and rapidly engaged with the treatment team to facilitate the recovery process. They also need our attention to ease their pain and suffering and to allow them to adapt to the challenges of having a child or sibling with schizophrenia.
The third section of the book focuses on "Neurobiological Investigations of the Early Stages of Schizophrenia." Much of the interest in early intervention in schizophrenia is focused on treating patients early in their course of illness. In parallel with this, there has been a great deal of interest in another form of early intervention‑intervention with those who are developing signs of schizophrenia early in life, that is, as children and adolescents. Many issues arise in considering patients in this age group who have signs of schizophrenia. Are childhood‑ and adolescent‑onset schizophrenia continuous with the adult form of the disorder? If a similar pathophysiology is being expressed, will the impact be different in terms of both brain structure and function when younger individuals are affected? Adolescents and children are likely to require different clinical approaches both for pharmacologic and psychosocial interventions than adults with a first episode.
Chapter 7, "Childhood‑Onset Schizophrenia: Research Update" by Sanjiv Kumra, Robert Nicolson, and Judith Rapoport describes research that has been carried out at the National Institute of Mental Health on children with schizophrenia. Although childhood‑onset schizophrenia is an extremely rare disorder, understanding the factors that contribute to very early onset forms of the illness may provide insights into the neurobiology of schizophrenia. Dr. Rapaport and her associates have carried out extensive studies investigating the clinical, genetic, and morphological brain findings in a unique cohort of patients with childhood‑onset schizophrenia. They make a strong case for considering the childhoodonset form of the disorder as a more severe variant of the adult‑onset form. Few systematic data are available to guide the pharmacologic management of these children. Dr. Rapaport's group has carried out a number of remarkable treatment studies involving these children. These studies are reviewed and discussed in their chapter.
Chapter 8, by Charles Schulz, Robert Findling, and Marilyn Davies, focuses on the topic of "Schizophrenia During Adolescence." Although the onset of schizophrenia is relatively more common in the teenage years, there is a paucity of research involving this group. Dr. Schulz and colleagues focus their review on the epidemiology of adolescent‑onset schizophrenia and studies of brain imaging and treatment response in this group. Although the biological findings are similar to those seen in adults, their work with magnetic resonance imaging bolsters a neurodevelopmental conceptualization of schizophrenia by demonstrating differences between patients and control subjects studied during this important stage of life. It is clearly important to think of adolescents with schizophrenia as a different group and not as smaller, younger adults with schizophrenia. They may differ in pharmacologic response, sensitivity to side effects, and the therapeutic approach needed.
Chapter 9, by John Kenny and Lee Friedman, reviews the literature on "Cognitive Impairment in Early‑Stage Schizophrenia" and describes their research on cognition in adolescents with schizophrenia. In the past decade, we have witnessed a surge in research on cognition in schizophrenia. Two principal interests have motivated this work. First, understanding patterns of cognitive dysfunction in schizophrenia may inform us about the regional distribution of neural dysfunction in schizophrenia. Second, the disability associated with schizophrenia may be related to a substantial degree to the pattern and severity of cognitive dysfunction experienced. Characterizing this dysfunction is a necessary first step toward understanding how to help those affected improve these deficits or manage with them. It has been particularly important to determine when during the course of illness cognitive dysfunction becomes apparent. To what extent does it exist premorbidly and reflect an underlying vulnerability to developing schizophrenia? Alternatively, it could be that cognitive dysfunction develops during the prodrome or early in the course of the illness. If this is the case, are there interventions that could prevent or limit the cognitive deficits? Answering these questions is critical if we are to develop effective treatment strategies for patients in the early stages of schizophrenia.
The Day the Voices Stopped: A Memoir of Madness and Hope by Ken Steele, Claire Berman (Basic Books) A nationally known spokesperson for the mentally ill offers hope and inspiration in this moving story of his 32-year struggle with schizophrenia and his remarkable recovery.
For thirty-two years Ken Steele lived with the devastating symptoms of schizophrenia, tortured by inner voices commanding him to kill himself, ravaged by the delusions of paranoia, barely surviving on the ragged edges of society. In this powerful and inspiring story, Steele tells the story of his hard-won recovery from schizophrenia and how activism and advocacy helped him regain his sanity and go on to give hope and support to so many others like him.
His recovery began with a small but intensely dramatic moment. One evening in the spring of 1995, shortly after starting on Risperdal, a new antipsychotic medicine, he realized that the voices that had tormented him for three decades had suddenly stopped. Terrified but also empowered by this new freedom, Steele rose to the challenge of creating a new life. Steele went on to become one of the most vocal advocates of the mentally ill, earning the respect not only of patients and families but also of professionals and policymakers all over America through his tireless devotion to a cause that transformed his life and that of countless others.
The Day the Voices Stopped will endure as Ken Steele's testament for all
who struggle with this heartbreaking disease.
Ken Steele was until his death from heart failure on October 7, 2000 a nationally recognized advocate for the rights of the mentally ill and the publisher of New York City Voices: A Consumer Journal for Mental Health Advocacy. He was also editor of The Reporter, the monthly newsletter of the National Alliance for the Mentally Ill/NYC-Metro chapter and served as spokesperson for the National Mental Health Association's "Partners in Care." Claire Berman is the author of several books on family relations, including Caring for Yourself While Caring for Your Aging Parents and Making It as a Stepparent. She lives in New York City.
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