Introduction by the column editors: Intervention at the onset of psychotic disorders is a highly attractive theoretical notion because its goal is secondary prevention, that is, the prevention of chronic illness. As such, early intervention has practical relevance as well, given the enormous social and economic impact of chronic mental illnesses.
It is all the more curious, then, that few mental health programs have been designed to identify and treat individuals who are in the throes of their first psychotic episode. One such program, developed by Lili Kopala, David Whitehorn, and their colleagues in Nova Scotia, incorporates many of the basic principles of psychiatric rehabilitation such as providing a supportive environment, identifying clients' goals and aspirations, involving families, and emphasizing social and academic or vocational reintegration into community life. It also includes several aspects unique to the experiences of young people who have experienced a first psychotic episode, such as a group designed to help members overcome obstacles encountered when returning to school, work, and social settings. The following description of the program may remind us of the value of rapid early detection of a first psychotic episode followed by intensive and persistent intervention.
In our clinical work with young people in the early stages of recovery from psychotic illness, we have encountered many clients whose experiences are similar to those presented in the following vignette. Phillip, 22 years old, experienced psychotic symptoms for more than two years before his condition was recognized and effective medication treatment started. Three months later, his hallucinations were gone, and the apathy and lethargy that were so prominent were replaced with renewed energy and interest in the future. But for the past month his attendance at the psychosocial rehabilitation program in his community has been sporadic. "Basically, the people there are older, and their expectations for themselves are much lower than mine," he explained. "I'm thinking about going back to school and getting together with some of my old friends."
The young people who come to us have experienced varying periods of declining function, often a year or more, culminating in the recognition of a psychotic disorder and the initiation of treatment. Often there have been obstacles along their pathway to care. In some instances, as in Phillip's case, the emerging psychosis had been attributed to drug use, thus delaying and complicating effective treatment (1).
In the vast majority of cases, young people experience significant and rapid improvement in mental status and functioning once appropriate antipsychotic medication is initiated. Nonetheless, they have been sidetracked from their previous developmental path. Many have lost jobs, dropped out of school, and lost contact with their friends. They struggle with the news that they have a psychiatric disorder. Although they may question their own ability to return to their previous social, vocational, and educational activities, they consistently state their goal as "leading a normal life."
This paper describes an outpatient program begun in autumn 1996 in Nova Scotia to help people during the initial stages of recovery from a psychotic disorder. Sixty percent of the clients are 19 to 27 years old. Twenty percent are in their late twenties and early thirties, and 20 percent are younger than age 19.
To help young people like Phillip attain their goal, comprehensive programs must be developed to address the unique needs of people in the early stages of recovery from psychotic disorders (2,3,4). Clients in the Nova Scotia early-psychosis program have an initial diagnostic assessment with a psychiatrist who sees each of them as often as necessary, based on their changing clinical condition. In general, clients are seen by the psychiatrist weekly or biweekly for initial medication adjustments and then less often.
During the initial assessment, family members also meet with the psychiatrist and with the clinical nurse specialist. The clinical nurse specialist provides support to the family and monitors the client's clinical progress. The clinical nurse specialist also provides the family with 24-hour access to urgent care through a telephone pager system and establishes links to the community mental health team in the client's own community through a liaison nurse. Through the liaison nurse, clients have access to psychiatric social work and occupational therapy services and to community support programs from the community mental health center.
In the first year of the early-psychosis program (1996-1997), the clinical activities for 45 clients were supported by a core program staff of a psychiatrist-director who works half time with the program, a senior psychiatric resident, and a clinical nurse specialist. In the second year the program expanded to serve 90 clients, and another half-time psychiatrist and a nurse were added to the staff.
In designing the early-psychosis program, we identified and implemented five major program components: an attitude of hope, optimism, and respect; early treatment with effective antipsychotic medications used in a way that minimizes side effects; psychoeducation and counseling about the personal meaning of having a psychotic disorder; help in returning to vocational and educational activities; and involvement of families as key members of the treatment team.
An attitude of hope, optimism, and respect.
Not the least of the problems facing a young person with a psychotic disorder are the negative stereotypes and pessimistic attitudes that have been associated with schizophrenia and other psychotic disorders. Kraepelin's description of dementia praecox emphasized the inevitable deteriorating course of the illness. This view still prevails among many mental health professionals, as well as the public, despite extensive research demonstrating great heterogeneity in the course of the disorders, with only a fraction of clients following a deteriorating course when early and continuous treatment is provided (5,6,7). Although the staff of the early-psychosis program recognize that psychotic disorders are serious, we convey realistic optimism based on the likely favorable effects of treatment on outcome.
Early treatment with antipsychotic medication.
Until recently, treatment with antipsychotic agents has been hampered by the frequent appearance of side effects, such as extrapyramidal symptoms (8). In addition, some aspects of cognitive function, which are already compromised among first-episode clients before starting antipsychotic medication (9), may be worsened by standard neuroleptics or by the addition of anticholinergic agents used to counteract extrapyramidal side effects (10,11). Many people feel dysphoric when receiving traditional antipsychotic medications and may be reluctant to continue taking them. These obstacles to continued use of medication are particularly important to address because current thinking on the treatment of psychosis suggests that medication should be taken consistently for a minimum of one year (12). In ourprogram, depending on an assessment of risk factors, we sometimes recommend even longer continuous treatment.
Fortunately second-generation (novel or atypical) antipsychotic agents, such as risperidone, olanzapine, and quetiapine, can be used to provide early treatment that both is effective and has minimal side effects. We use these medications as first-line agents in our program. Clozapine is reserved for clients who do not respond to any other agent. The ability of these antipsychotic agents to reduce negative as well as positive symptoms and possibly to improve cognitive function (13,14) has enormous importance in preparing clients to participate fully in recovery and rehabilitation activities.
Psychoeducation and counseling.
A key aspect of rehabilitation and recovery is for the client and his or her family to form a coherent conceptual framework in which to place their experience and to use this framework as a guide for future decision making. Developing a conceptual framework is a difficult task for young persons who have been told that what they have been experiencing is called psychosis and that they will need to take medication for an extended period of time. Program staff help clients with this task by providing information (psychoeducation) and by providing an interactive environment in which they can process that information (counseling).
In our experience, young people are often reluctant to recognize that they have an "illness" and prefer a more normalizing explanation. We support them in coming to their own conclusions while trying to guide them away from extreme views—at one extreme, a denial of any difficulties and rejection of treatment, and at the other, adoption of a sick role and excessive reliance on treatment. The road to rehabilitation and recovery lies along the middle ground. In providing information, we prefer the term "medical condition" rather than "illness." A medical condition is one that is associated with biological alterations and is improved by pharmacological and other treatments.
Help in returning to vocational and educational activities.
The clearest signs of recovery and rehabilitation are a return to age-appropriate activities. For young people, primary activities are completing or continuing education and getting started in the workforce. People in this age range are faced with developmental tasks related to consolidating their identity by establishing educational and vocational goals and developing autonomous social and economic relationships. Program staff work with existing community-based vocational and educational programs to mainstream clients as much as possible. The intent is to avoid programs designed either for very seriously impaired clients with chronic psychiatric disabilities or for people without psychiatric difficulties.
We focus on helping families create a stable home environment that supports recovery by approaching them as partners in care. We provide psychoeducation and counseling for family members and encourage them to reinforce incremental progress of their relative (15).
As we worked individually with young people, we heard them asking, "Are there other people like me, who are going through the same experiences?" When we replied that there were, they were surprised. They had thought they were the only ones. When we asked them whether they would like to meet others with similar experiences, they said yes.
We brought together several clients to help us design a group program. They recommended that group sessions should be kept simple and should be designed to encourage informal discussion. They suggested that a professional be present at the sessions and that the sessions be held biweekly.
The early group meetings had a remarkable degree of openness and sharing about psychotic experiences. Several people said that they had not realized what their symptom experiences had been about until they had heard others talk about them in the group.
As the group progressed, the discussion shifted from past psychotic experiences to the issues of returning to school and work. Here it became evident that some people had moved further than others along the path of recovery. Those who were back at work were able to encourage others by providing role models. After several months, group members embarked on a project to develop a videotape about the group that would serve as an introduction to prospective members. The young people participated in filming and editing and contributed interviews and original music. The completed videotape is now used routinely with people newly referred to our program and is available from the authors.
Clients are made aware of the peer support group if program staff determine that the group environment would not be overly stressful. Participation is purely voluntary. In most cases, clients are ready to participate in the group within the first 12 weeks of treatment. In the 24 months that the peer group program has existed, 40 clients have chosen to participate in it.
In the first two years of operation, the program fully assessed 115 clients with early schizophrenia and schizophrenia-spectrum disorders. The symptom severity and general level of functioning of all clients entering the program were rated using standardized scales and were reassessed after three, six, 12, and 24 months in the program, as well as whenever a significant clinical change occurred.
Because the program has been active for only two years, long-term outcome data are only now becoming available. At six months, 68 percent of clients achieved a full remission of positive symptoms, and an additional 22 percent achieved significant symptom reduction. These results were sustained for clients who were in the program for at least one year. Hospital readmission rates for all clients have been less than 20 percent per year.
As is well known, recovery of social and occupational functioning requires a longer period of time than symptom reduction. Our experience has been that functional outcomes are strongly influenced by the age of the client and the level of functioning achieved before the onset of psychosis. Clients who were under age 19 when they entered the program (20 percent of all clients) almost all lived with their family of origin. Most of these families reported that their ill relative showed improved functioning at home and an ability to continue with his or her education. Most clients who were over 27 years old (20 percent) had established some degree of social and occupational independence to which they were able to return. However, many clients who were between age 19 and 27 had not yet left home or developed a consistent work situation, often due to prodromal dysfunction or an extended period of untreated psychosis. This group appears to have less success in recovering social and occupational functioning and will require more intensive psychosocial rehabilitation.
Afterword by the column editors:
The current treatment environment provides great opportunity for secondary prevention by reducing the severity of psychotic disorders via early detection and treatment. With new medications that have a broader range of effectiveness and fewer side effects and with a renewed sense of hope, Dr. Kopala, Dr. Whitehorn, and their colleagues, as well as others throughout the world, have developed multidisciplinary early-psychosis programs that embrace the principles of psychosocial rehabilitation. Although the results of long-term follow-up studies are not yet available, clinical outcomes for people with a first episode of psychosis appear to have improved considerably over the past several years.
Over the coming decade, more early-psychosis programs will emerge. If the current trend toward improved outcomes with early detection and treatment is confirmed, we should see a substantial reduction in the degree of long-term psychiatric disability. Psychosocial rehabilitation principles, applied to the unique needs of people recovering from a first episode of psychosis, can play a key role in this exciting opportunity in prevention. It is hoped that early-psychosis programs will facilitate the efforts of young clients as they attempt to move through the steps of recovery and rehabilitation to reach their personal goal of a normal life.
Dr. Whitehorn is a coordinator of the Nova Scotia early psychosis program and a member of the Research and Community Education Group, Nova Scotia Hospital, P.O. Box 1004, Dartmouth, Nova Scotia, Canada B2Y 3Z9. Dr. Lazier formerly was senior psychiatric resident with the early-psychosis program. Dr. Kopala is director of the Nova Scotia early-psychosis program and professor and director of research in the department of psychiatry at Dalhousie University in Halifax, Nova Scotia. Robert Paul Liberman, M.D., and Alex Kopelowicz, M.D., are editors of this column.