We know a great deal about how to care for people with schizophrenia, but often that knowledge is difficult to act on. Insufficient resources and inefficient public health systems are partly responsible, but an equally serious problem is that patients with schizophrenia don't consistently take an interest in their treatment. They stop taking their medications, miss their appointments, and lose touch with mental health professionals and others who might help them.
This lack of compliance with (or adherence to) treatment greatly increases the cost of care and the risk of homelessness and suicide. It is probably the most important cause of relapse leading to hospitalisation. In one study, patients with schizophrenia who quit taking their medication were almost five times more likely to relapse over a five-year period. Even gaps of a few days increased the risk of hospitalisation.
Most people with schizophrenia neglect or avoid treatment at some time and to some extent. A study of nearly 8,000 Medicaid patients with schizophrenia and bipolar disorder found that about a third of them took their anti-psychotic medications less than 80% of the time. In another study, patients went without their medication on average once in every three days.
The problem can be difficult to recognize. Patients may not tell physicians when they are not taking medications for fear of hurting their feelings or provoking their anger. In an experiment employing a pill bottle fitted with an electronic device that indicated when it was opened, researchers found that more than half of patients with schizophrenia were not complying with treatment. If they had simply counted pills, they would have found only about 25% not using the medication as prescribed, and if they had relied solely on the patients' own reports, only 3%.
Causes of the problem
The main reason for neglecting medication is lack of insight into the illness. One study found that 32% of patients with schizophrenia were unaware of its social consequences and 22% denied the need for medication. Many are unable to recognize that they have an illness, an impairment that persists even after successful treatment of psychosis. They may decide that they don't need treatment because of grandiose delusions, or they may fear treatment because of paranoid delusions. They miss appointments with mental health professionals because they are withdrawn and isolated, or refuse meetings because they are suspicious and mistrustful. Sometimes they become depressed and give up hope. Often they cannot remember or collect their thoughts sufficiently to seek and accept help. Drug abuse and alcoholism contribute to the problem.
Patients may be suffering intolerable side effects because the medication dose is too high or they are taking the wrong medication. Doses must be carefully adjusted, especially to minimise akathisia (persistent restlessness) and other movement disorders. Medications may have to be changed or new medications added. Patients must be repeatedly encouraged to report side effects rather than just not using the drug.
For patients who are forgetting to take their medication, a pill box with daily compartments may be useful. Family members can help by filling the box and monitoring the patient's medication use. Testing for medications in blood or urine is impractical because patients who are reluctant to take their medications will be even more reluctant to submit to such tests.
An increasingly popular solution is to inject an anti-psychotic drug into a muscle in a shoulder or buttock every few weeks for gradual absorption. The technique is called depot (French for "deposit") medication, and the second-generation drug risperidone (Risperdal) is now available in this form. Physicians and psychiatrists are sometimes hesitant to offer depot medication because it cannot be withdrawn quickly in case of troublesome side effects. Patients may not want to lose control over decisions about when to take the drug.
But there is evidence that these worries are exaggerated. Controlled studies have shown that use of depot medication lowers the relapse rate - in one trial, from 42% to 27% over one year, and in another, from 65% to 40% over two years. Depot medication also has other potential advantages. The dose can be lower, because the drug does not have to pass through the digestive system and liver. The blood level fluctuates less. Patients who receive injections regularly will have periodic contact with someone who is caring for them. One survey found that patients with schizophrenia actually prefer depot medication to standard oral dosing.
There are many ways to help patients continue to take their medications and keep their appointments. The patient and family can be instructed about medication side effects, especially the need to keep taking an anti-psychotic drug even when psychotic symptoms ease. A review of controlled studies by the Cochrane Coalition found that this kind of education reduced the rate of relapse and hospitalisation. Motivational interviewing and training in problem-solving techniques may also be useful.
Cognitive therapy can help patients test the reality of their thoughts and perceptions, in order to reject misinterpretations and false assumptions that lead them to neglect treatment. A meta-analysis of 39 studies found that the most successful programs used methods directed specifically at the need to keep appointments and take medication.
In the literature on the treatment of patients with schizophrenia, ‘continuity of care' has become a recurrent turn of phrase, and it's understandable why. Studies show that patients are most at risk of abandoning treatment when no one is available to guide them in transitions. For example, they often drop out and lose touch with the mental health system when they leave a psychiatric hospital after a psychotic episode and fail to keep the first appointment with a therapist on the outside. Experts recommend that hospital staff schedule the first outside meeting within a week; have the patient visit the outpatient clinic before discharge, if possible; provide a telephone number for the patient to call in case there is a problem; and call the outside clinician and patient afterward to see whether the patient showed up.
It's also recommended that members of a community treatment team visit the patient in the hospital before discharge, provide the patient with a telephone number, place a reminder call to the patient after discharge, and call to reschedule if the patient misses the first appointment. If necessary, they can also get in touch with relatives, call a supervised living facility, or visit the patient in a home or group home.
It's particularly helpful if some of the same people who care for a patient in the hospital can also work with him or her outside. A meta-analysis has found that these measures are effective - especially telephone reminders, contacts with outside clinicians before discharge, and instruction in the hospital.
Another approach to continuity of care is assigning a case manager who co-ordinates services and helps patients get what they need. Today intensive case management also includes providing services directly. In assertive community treatment, a form of intensive case management, a team makes a long-term commitment to individual patients.
A staff of ten to twelve takes responsibility for about a hundred patients, reaching out to them in their homes and on the streets, encouraging them to get treatment for drug abuse and alcoholism, responding to emergencies, coping with crises, even ordering and delivering medications and supervising their use.
It's been found that assertive community treatment increases patients' satisfaction and reduces the need for hospitalisation.
Above all, patients are more likely to remain in treatment, and receive the information that allows treatment to be effective, if they have regular contact with a trusted clinician who offers sympathy, reassurance, encouragement, and advice; explains the nature of the disorder; helps them to acknowledge its reality; and co-operates with them and their families in making decisions.
One of the obstacles to proper care of patients with schizophrenia is that their priorities and the priorities of professional caregivers do not always coincide. One study found that professionals tended to agree with patients' relatives, but not with patients themselves, both about which needs were most important and about the patients' wishes. All three groups gave first place to psychotic symptoms - hallucinations and delusions. But patients, compared to their relatives and clinicians, regarded drug side effects as relatively unimportant and independent housing as much more important. Family members were more concerned than patients or clinicians about negative symptoms - emotional constriction and unresponsiveness, apathy, limited speech, and social withdrawal.
Patients, families, and clinicians agreed more closely on which services were most helpful, including regular physician appointments, information about the disorder, classes to improve skills such as money management, and treatment for drug abuse or alcoholism. But even here there were differences. Clinicians tended to value case management, the control of symptoms, and medication management more than patients did. Patients and their relatives put more emphasis on social support, housing, and medical services.
More important, different patients had different priorities, and the differences from one patient to the next were greater than their disagreements with relatives and clinicians. This finding confirms the importance of understanding the wishes and hopes of each patient with schizophrenia. By answering that need, a clinician who can claim familiarity with the patient may help to ensure that treatment will continue despite all obstacles.
For more information on schizophrenia, please see www.health.harvard.edu/mentalextra.
This article is provided courtesy of Harvard Medical International. © 2007 President and Fellows of Harvard College.For all the latest health tips & news from the UAE and Gulf countries, follow us on Twitter and Linkedin, like us on Facebook and subscribe to our YouTube page, which is updated daily.
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