Rehab Rounds: Outcomes of Patients With Schizophrenia in a Family-Style, Residential, Community-Based Program in Italy

Introduction by the column editors: Environments for the care, treatment, and rehabilitation of persons with mental disorders have taken many forms, ranging from sheltered and isolated asylums to mainstream community-based programs with specialized supports. Since the 1960s, and concurrent with the civil rights movement for mental patients, providing treatment outside of mental institutions in the least restrictive setting has been emphasized by mental health advocates and supported by several legal decisions in the United States (1). However, one challenge that has arisen is the need to balance the requirement of delivering treatment in the least restrictive setting with the benefit of providing comprehensive psychiatric rehabilitation services that are well coordinated and continuously available.

One solution to this dilemma has been to embed psychiatric rehabilitation techniques within a residential program, such as was done with good outcomes at Soteria House (2) and in social learning programs in the 1970s (3). However, despite these and several other successful efforts to provide residential alternatives to long-term hospitalization (4), in most parts of the United States the provision of psychiatric rehabilitation services is not linked to housing.

In this column, Dr. Guazzelli and his colleagues from the University of Pisa describe a program that combines the basic philosophy of providing a long-term, community-based residential alternative to hospitalization with a commitment to the use of evidence-based psychiatric rehabilitation techniques. They also report the results of an evaluation of two-year outcomes for program residents with schizophrenia.

The closure of large government-operated hospitals for the mentally ill population in Italy has led to a profusion of experiments in community-based care. One novel approach to the treatment of persons with serious mental illness outside of hospitals is the Cooperativa Humanitas, founded in 1982 and located in a rural area near Florence, Italy.

Cooperativa Humanitas consists of six family-style residences, each one accommodating six or seven patients. Twelve social workers, supervised by a psychologist and psychiatrists, constitute the staff. Staff members emphasize individualized assessment for treatment planning; engagement of residents in work, including farming, cooking, and leather and woodworking; activities of daily living; medication monitoring; and social and recreational activities. Residents have diagnoses of schizophrenia, bipolar disorder, major depression, and personality disorders.

Residents are referred to the rehabilitation community by their psychiatrists, who work in the public health service. Typically, residents with schizophrenia come directly from inpatient settings and are placed in the rehabilitative community because they have a long history of repeated or prolonged hospitalizations and have not been able to live in the general community either alone or with their families. The public health system covers all costs related to treatment in the rehabilitative community, which is much lower than the costs of inpatient treatment in public psychiatric hospitals.

The referring psychiatrists remain responsible for the pharmacological treatment of the residents for the duration of their stay in the rehabilitative community. The psychiatrists visit the residents every two weeks and are free to modify their pharmacological regimens as necessary. Residents may live in the Cooperativa Humanitas as long as deemed necessary by their psychiatrists and the treatment team.

Once in the rehabilitative community, residents may receive one of three different levels of supervision and intervention, depending on their level of functioning: complete assistance, with one-to-one services from a staff member to carry out the daily routine; partial assistance, in which residents participate in the community with one staff member supervising two residents; and minimal assistance, in which participants spend most of the day working outside the community and manage their own finances and medication, with one staff member supervising four residents. Manual-based skills training and learning-based skills training are used on an individual basis. Planned and scheduled activities consume most of the residents' waking hours. A more extensive description of the program is available from the authors.

Evaluation

Systematic evaluation of the program has been conducted only for residents with a diagnosis of schizophrenia. Twenty-one residents with a DSM-IV diagnosis of schizophrenia participated in the program between 1995 and 1997. Diagnoses were confirmed independently by two psychiatrists.

Of the 21 residents, 19 completed two years of the program. The other two residents withdrew within the first six months, and data for these patients were not included in the evaluation. One of the patients who dropped out had a psychotic relapse that required hospitalization; the other moved to a day care center because of budget limitations in the local public health system.

Of the 19 residents, 12 were men. The residents' mean±SD age was 29±5 years, with a range of 19 to 37 years. Five residents had paranoid schizophrenia, four had the disorganized subtype, two had the catatonic subtype, one had the undifferentiated subtype, and seven had residual schizophrenia. The mean±SD duration of illness was 11.6±4.6 years, with a range of five to 23 years.

At the end of the two-year evaluation, the residents' mean±SD length of stay in the Cooperativa was 32.3± 3.2 months. Thirteen patients were taking conventional antipsychotic drugs, five were taking clozapine, and one was unmedicated. The mean±SD daily dose in chlorpromazine equivalents was 225±240 mg.

During the two-year evaluation period, seven of the 19 residents moved from complete assistance to minimal assistance; six moved from complete to partial assistance; and six remained at the complete-assistance level. One of the seven residents who moved to the minimal-assistance level also moved outside the rehabilitation community, although he continued to work in the community and was an active participant in its rehabilitation activities. Two residents at the minimal-assistance level and one receiving partial assistance at the start of the evaluation regressed to the complete-assistance level.

The residents were evaluated with multimodal assessment instruments every three months for two years by trained raters who were not aware of the purpose of the study and did not know the assistance levels or medical histories of the individuals. Assessment data were obtained at baseline and at six, 12, and 24 months after admission to the program. Rating instruments included the Brief Psychiatric Rating Scale (BPRS) (5), the Scale for the Assessment of Negative Symptoms (SANS) (6), and the Comprehensive Occupational Therapy Evaluation Scale (COTES) (7). The COTES provided ratings of the degree of impairment in several domains grouped into three categories—general behavior, interpersonal behavior, and task behavior. Ratings on the COTES were on a 5-point scale, from 0, indicating normal functioning, to 4, indicating severe impairment.

As a group, the residents showed reduction in overall psychiatric symptoms of more than 40 percent. The mean±SD BPRS score for the 21 patients when they entered the program was 74±15. Two years later the mean± SD score for the remaining 19 patients was 57±14. Possible scores on the BPRS range from 0 to 126, with higher scores indicating more severe symptoms.

Over the two-year period, patients' negative symptoms showed a 20 percent improvement as measured by the total score on the SANS, which measured affective flattening, avolition, alogia, and anhedonis. At baseline the mean±SD total score was 16.8±3.2, and at two years it was 12.5±4.6. Possible total scores on the SANS range from 0 to 20, with higher scores indicating more severe negative symptoms.

As measured by the COTES, patients experienced a 40 percent reduction in impairment in occupational functioning over the two-year period. The mean±SD score for the group fell from 79±18 at baseline to 47±21 at two years. Scores on the COTES range from 0 to 100, with higher scores indicating more impairment.

No significant change was observed in the mean dose of antipsychotic medications prescribed to the 19 residents during the two-year period, and no patient was switched from a conventional to an atypical antipsychotic or vice versa.

Case vignette

Ms. M is a 28-year-old single female with a ninth-grade education who had her first psychotic episode at age 18. During the first two years of her illness, she was hospitalized often because of paranoid delusions and persistent auditory hallucinations that were refractory to pharmacological treatment. By the time she was 20 years old, Ms. M also manifested negative symptoms, including blunted affect, anhedonia, and social isolation.

That same year, after an acute psychiatric hospitalization, Ms. M was referred to the Cooperativa Humanitas. Initially, she refused to participate in daily scheduled activities, preferring to spend most of her time alone. Eventually, she began to take part in the community rehabilitation program at the Cooperativa. During her first two years, she received complete assistance in a family house. Through the use of social learning techniques such as modeling and coaching, the rehabilitation staff helped Ms. M relearn personal hygiene and housekeeping skills. When she was able to perform these tasks independently, she was moved to a house in which she received partial assistance.

About the same time, Ms. M began to attend the occupational center located on the grounds of the Cooperativa, focusing her energies on painting and leatherwork. Her efforts resulted in a number of intricate paintings and well-designed handcrafted objects. She also expressed an interest in learning how to cook. After some initial and successful training in the Cooperativa, the staff arranged for her to attend a cooking course a few miles away. For the first time since arriving at the Cooperativa, Ms. M interacted with people outside the program environment, and she managed the situation successfully. She demonstrated good interpersonal skills with the other participants in the cooking class, and she was able to use public transit without assistance from staff.

Her steady functional progress coincided with dramatic improvements in her symptoms. Although she had been taking clozapine since age 19, Ms. M's positive and negative symptoms went into remission for the first time in five years. As a result, she was moved into a house rented for her by the Cooperativa. The level of assistance provided by the Cooperativa was limited to only a few hours of support and supervision during the day. She also obtained a full-time job as a cook in the Cooperativa restaurant. She continued taking clozapine at the daily dose of 400 mg.

After 18 months free of symptoms and exhibiting good psychosocial functioning, Ms. M suffered a psychotic relapse. For the first time in seven years, she required acute psychiatric hospitalization. During her inpatient stay, hospital staff and the Cooperativa's clinical team were in close consultation to coordinate her discharge plan.

After two weeks of hospitalization, during which she was stabilized on clozapine and low doses of haloperidol, she returned to the intermediate-level family house. After only a few weeks, she resumed her previous activities at the Cooperativa. As of this writing, Ms. M is free of positive symptoms and lives in a community family house where she receives minimal assistance. She is also working as a housekeeper inside the Cooperativa. She manages her own finances and daily activities independently, and she also manages her daily dose of clozapine (500 mg), with good compliance.

Afterword by the column editors: The creation of rehabilitative communities such as Cooperativa Humanitas may seem logistically complicated and prohibitively expensive for the great majority of persons with severe and persistent mental illness. However, as a means of reducing revolving-door acute hospitalizations and as an alternative to long-term psychiatric hospitalization, such an approach is undoubtedly cost-effective. In addition, the program provides residents with a carefully determined level of supervision and assistance, enabling them to acquire the skills needed for independent living. The program combines the strengths of the supported housing approach—helping residents develop skills on-site while providing ongoing support and assistance—with the stability afforded by a structured residential setting in the context of a much more normalized life in the community (8).

Increasingly, agencies providing assertive community treatment services in the United States are incorporating a residential component into their programs. This approach provides the agency with a less expensive option than acute psychiatric hospitalization and helps individuals with mental illness take on roles held by nondisabled people—tenant, householder, neighbor, and mainstream community member (9). A thorough description of such a program will be the subject of a future Rehab Rounds column.

Dr. Guazzelli and Dr. Palagini are affiliated with the department of psychiatry, neurobiology, pharmacology, and biotechnologies and Dr. Pietrini is with the department of human and environmental science at the University of Pisa, Via Roma 67, I-56100, Pisa, Italy (e-mail, [email protected]). Dr. Giuntoli is with Cooperativa Humanitas in Prato, Italy. Alex Kopelowicz, M.D., and Robert Paul Liberman, M.D., are editors of this column.