A Clozapine Patients Frederica R.N.,

Living

W. O’Connor, Ph.D.

J oanne

E.

Sprunger,

A.R.N.P.,

M.N.

Sara

Treatment

D.

Petry,

M.D.

Clozapine treatment for schizopbrenicpatients living in the cornmunity requires strategies to ensure safe use ofthe medication and to foster patients’ emerging social and living skills. The authors describe a clozapine treatment program in a community mental health center that includes a weekly clozapine support group meeting followed kv drawing of blood for monitoring of side effects. Case managers and other program staff remind patients to take clozapine asprescribedandhelp them comply with hematological monitoring requirements, manage side effects, deal with the emotional aspects of improvement, and benefit from emerging capabilities. About 75 percent oftbe center’spatients who have been offered clozapine have decidedto take the medication, and almost allpatients in the clozapine treatment program have experienced significant symptom relief and functional development with manageable side effects.

Clozapine differs from other antipsychotic medications in the means by which it is distributed to patients,

Dr. O’Connor is assistant professor of psychosocial nursing at the University of Washington (SC76), Seattle, Ms. Sprunger ical services ical director

Health

Hospital

Center

Washington is manager and Dr. Petty at Olympic

98195. of medis medMental

in Everett.

and Community

Psychiatry

Program

for

in the Community cost, and side effects and in its superiot reduction of symptoms of schizophrenia in refractory patients (1-3). Each of these features has implications for clinicians in communitybased treatment programs. Our mental health center began prescribing clozapine in August 1990. This account describes our expeniences in establishing a clozapine treatment program, identifying prospective candidates for c!ozapine treatment, promoting safe and reliable use ofthe drug, and helping patients adjust to getting better. We report on 25 patients who had been in the clozapine treatment program between three and 1 8 months at the time this paper was prepared. Starting

the

A master’s-degree

program

psychiatric

nurse

practitioner was designated as the clozapine contact person in the agency. She ensures that patients who may be appropriate for clozapine treatment are evaluated, prescribes the medication in some cases, cootdinates blood tests for monitoring side effects, and resolves problems related to use of the drug. She maintains contact with the drug’s manufacturer (Sandoz) and distributor (Canemark) and communicates new information to other prescnibers. The nurse practitioner, along with a case manager, leads a weekly c!ozapine support group that meets on Wednesday mornings. After the meeting, patients’ blood is drawn for hematological monitoring. The next week’s supply of clozapine is then distributed. Identifying candidatesfor clozapine treatment. Our initial review of patients produced a sizable group who were clinically appropriate for clozapine treatment. However, dozapine’s high cost limits its avail-

September

1992

Vol.

43

No.9

ability for some patients. States are required to reimburse the distributor for clozapine treatment of Medicaid recipients. Medicare does not pay for medications, but beneficiaries sometimes qualify for a supplement from Medicaid after paying a portion of their own medical expenses. We have patients on Medicare who are appropriate for clozapine treatment but who have incomes or assets that make them ineligible for Medicaid supplementation. One patient, eager to try clozapine but ineligible for Medicaid because of a precious $12,000 in savings, liquidated his nest egg to help his family pay debts. Another patient decided to transfer assets to an account with Caremark-essentially paying his medication bill in advance. During periods when the patient does not receive a Medicaid supplement, Caremark draws on this account to pay for his clozapine. A third patient took clozapine for six months using his own money during periods when he was not receiving a Medicaid supplement. After deciding that the financia! burdens and sedation side effects outweighed the benefits ofclozapine, he discontinued it. Patient decision making. When we discuss clozapine with patients, we explain the need for weekly blood tests, clarify that clozapine comes only in pill form, and tell patients that the application process for clozapine treatment takes several weeks.

We distribute

pamphlets

and offer

patients the opportunity to see an educational videotape prepared by the medication’s manufacturer. Patients who are contemplating clozapine treatment are invited to the center’s clozapine support group to meet patients who are already taking the medication. Most can-

909

clozapine treatment After clozapine is initiated, the continuing issues are promoting safe, reliable use of the medication and helping patients benefit from the improvement in their symptoms. Promoting safe, reliable use. Although some patients live in settings where their medication compliance is supervised, program staff usually have minimal control over how patients take their pills or whom they share them with. Patients who live independently receive reminders from their case managers or may use pill organizers with compartments for each day. Even patients who experience dramatic improvements and are enthusiastic about clozapine need encouragement to keep taking it daily. To promote compliance, we usually structure prescriptions so that patients take the total daily dose in the evening. A history of unreliable use of oral

neuroleptics sometimes but not a!ways portends unreliable use of dozapine. Two patients with histories of medication noncompliance were withdrawn from clozapine because they took it erratically. However, two other patients with such histories who were highly motivated to try clozapine took it fairly reliably, as did two patients who had been receiving neuroleptic injections because they had been noncompliant with oral preparations. Some patients who experience drowsiness from clozapine have asked ifthey could share their medication with friends who have trouble sleeping. One patient who was not on clozapine took a 300 mg dose from a roommate’s supply and could not be aroused. He was taken to an emergency room and admitted for overnight observation. We emphasize to patients their responsibility for safeguarding their pills. Drowsiness and difficulty awakening affect virtually all patients during their first weeks on clozapine. This side effect persisted in one patient, who slept through loud telephone ringing a few feet from him. (He disconti nued clozapine, primanly due to the cost.) Difficulty being roused can be a safety hazard in an independent-living situation. We recommend to patients who have trouble awakening in the morning that they take their evening medication between 7 and 8 p.m. We help patients structure their day with adtivities to combat drowsiness, and we encourage patients who tolerate caffeine to drink coffee. Patients who consider stopping clozapine because of drowsiness are reminded that this side effect is usually time limited. Such patients may also be encouraged by reports from patients who have taken the medication for longer periods that the drowsiness lessens over time. Cataplexy and seizures present special concerns bcLause of the potential for injury due to falls and other accidents. Four patients have experienced cataplexy, manifested as either buckling ofthe knees or dropping ofitems. Patients with ongoing cataplexy are urged not to hold glassware while standing. In one case a patient collapsed on the street and a

shopkeeper called paramedics, who found the patient conscious and uninjured. Two patients, neither of whom had a history of seizures or head trauma, experienced grand ma! seizures. One seizure occurred in the agency’s clubhouse program; the patient fell forward, breaking his nose and frightening other patients. Patients learn from staff and other patients that these events sometimes occur and that while they are distressing, they can be explained as medication side effects that can usually be managed. None of 14 patients in the first year of the program had significant alterations in white blood cell count. Several patients experienced minor drops in white cell counts that resolved spontaneously. Recently a patient who had taken clozapine for five months had a precipitous drop in his white cell count. Clozapine was stopped, and, under the guidance of a hematologist, the patient was monitored in his own environment. His blood count was restored to normal in three days. More than halfof the patients on clozapine have noticeably gained weight, but only patients with gains of 1 5 to 20 pounds seem troubled by the side effect. Two patients consuited with a dietitian. One young male patient who decided to work out at a gym applied his improved motivation and interpersonal skills to obtain and compare membership information from the YMCA and a health club. Helping patients adjust. Patients on clozapine usually expenience positive changes in the first week or two. An early change is the appearance of a sense of humor. Patients also become interested in “hanging out” with other patients, even if their efforts to participate are awkward. In the clozapine support group, patients whose comments have been tangential or nonsensical begin to make more focused and relevant contributions. Patients also become more aware ofappointment times. Hygiene and grooming improve with minimal encouragement. Delusions and hallucinations become less compelling and sometimes completely remit. Patients with tardive dyskinesia ex-

910

September

Hospital

didates for clozapine are interested mainly in potential side effects and are particularly concerned about the possibility of seizures. Candidates learn that patients who have been taking clozapine, including one patient with occasional seizures, fee! that neither the side effects nor the weekly needle sticks are as distressing as their previous symptoms. Clozapine has been accepted by about 7 5 percent of the patients to whom it was offered. Patients with distressing hallucinations agree most readily. Patients who take more time to decide or who decide not to take the medication are generally quite psychotic and hostile, do not want a needle stick every week, or are not dissatisfied enough with their current symptoms or medication side effects to risk taking a new medication. Even some patients with severe tardive dyskinesia seem hesitant; many ofthose patients deny the presence of that side effect, minimize its severity, or misinterpret its cause. We respond to patients’ reluctance by emphasizing how much better clozapine can control their symptoms, by exploring their hesitations, and by encouraging them to discuss their reservations with patients already on clozapine.

Issues

during

1992

Vol.

43

No.9

and

Community

Psychiatry

penience marked reduction in involuntary movements. Overall, patients are very pleased by their diminished symptoms and improved functioning. However, improvement can also be distressing for some patients. One man was lonely without his hallucinations. He became depressed when he recognized that his family had long ago cut off contact with him and that he had no friends and little idea of how to develop relationships. One woman agonized over the childhood abuse she began to remember and her recognition that her behavior alienated her own children. The majority of patients either lacked clear recall of their previous psychotic

states

or minimized the significance ofthe past. Persons who respond to clozapine typically need to develop daily living skills, establish connections with potential friends and community resources, and revise their self-concept to match their newly apparent potentia!. Patients who reexpenience the losses and compromises of their lives with schizophrenia need to grieve. These tasks are facilitated by the clozapine support group, the agency’s clubhouse program, case managers, counselors in residential programs, and families. In the weekly clozapine support group, patients compare experiences and coach prospective and novice clozapine recipients. The group also functions as a laboratory where patients informally practice new social skills and discuss current problems. Although this focus evolves almost naturally, staff promote problemsolving discussion, practice of interpersonal skills, mutual encouragement, and recognition of functional accomplishments. They also urge members to get together between group meetings to socialize and to assist one another with such everyday activities as grocery shopping. Patients who live in facilities with skill-building programs increase their competence in daily living skills most quickly. Three patients have moved from residential facilities to supported independent-living units. One patient is taking college courses, and another plans to comHospital

and

Community

Psychiatry

plete high school. Several patients are developing work skills in the clubhouse program. One patient is in supported employment. Although none of the patients were competitively employed when this report was prepared, some appear likely to achieve this goal. In contrast to reports that some families did not want their schizophrenic relative to take clozapine (4), we have found that most of our patients’ families are extremely supportive. In several cases families persuaded patients to accept clozapine. One patient’s brother helped the patient purchase all the groceries he needed when he moved from a residential facility to a supported-living apartment. The woman who had alienated her children was invited to visit her son in another state. After six weeks on clozapine, a man who had been very disorganized and paranoid received a visit from his mother, who helped him clean his room. He continued to keep his room tidy long after the visit. Later she brought the clarinet he had used in high school, and he began to take music lessons. Administrative implications The community mental health denten has accommodated the changing clinical needs ofpatients who receive clozapine with minimal change in agency program structure. However, the activities of certain staff have been adjusted. The nurse practitioner co-leads the clozapine support group and provides coordination and consultation services. Case managers remind patients to attend the support group and sometimes transport patients to the agency for group meetings. To further encourage attendance, patients for whom the agency serves as protective payee receive their money on the day ofthe meeting. When patients miss a blood draw, case managers locate them and take them to a local laboratory. Case managers also provide counseling and foster the learning and practice of living skills. Clubhouse staff deviate from their program’s nondirective philosophy to provide clear guidance to patients about clozapine use and hematological testing. September

1992

Vol.

43

No.9

Conclusions Clozapine treatment in the community requires the development of strategies to ensure safe, reliable use of the medication and to foster patients’ emerging social and living skills. The centerpiece of the clozapine program at our community mental health center is a weekly dozapine support group in which patients discuss their experiences, enviSiQn new ways of living, work together to solve problems, and practice social skills. Case managers, staff at the center’s clubhouse program, and counselors at residential sites help patients get to the center to attend the group and receive blood tests. They also help facilitate patients’ skill development and support their changes in self-concept. Rates of catap!exy and seizures have been higher than anticipated, but most patients’ side effects have been transient or manageable. The only case of leukopenia that develo_ among the patients in the program remitted rapidly when clozapine was withdrawn. Our experience suggests that a treatment program combining clozapine, psychosocial rehabilitation, and peer support offers significant advantages to schizophrenic patients developing lives in the community and that such a program can be successfully provided in an outpatient setting. Acknowledgment Work on this paper was partly ported by grant 1-TO1-MH19042 Dr. O’Connor from the National stitute ofMental Health.

supto In-

References 1. Kane

J,

Singer J, et al: treatment-resistant Archives of General Psy-

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2.

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for the

schizophrenic. chiatry 45:789-796,

1988

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HY, Burnett of six months

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and

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Psythiatry 41:892-897, 1990 A, LiebermanJ, KaneJM, et al: Update on the clinical efficacy and side effects of clozapine. Schizophrenia Bulletin 17:247-261, 1991 4. Conley RR, Baker RW: Family response to improvement by a relative with schizophrenia. Hospital and Community Psychiatry4l:898-901,

1990

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A clozapine treatment program for patients living in the community.

Clozapine treatment for schizophrenic patients living in the community requires strategies to ensure safe use of the medication and to foster patients...
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