Causes of the problem

The main reason for neglecting medication is lack of insight into the illness. One study found that 32% of people with schizophrenia were unaware of its social consequences and 22% did not see 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 They miss appointments with mental health professionals because they are withdrawn and isolated, or refuse meetings because they are suspicious and mistrustful.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.

Solutions

People may suffer intolerable side effects because the medication dose is too high or they are taking the wrong medication. Doses must be carefully adjusted, especially to minimize akathisia (persistent restlessness) and other movement disorders. Medications may have to be changed or new medications added. People must be repeatedly encouraged to report side effects rather than just not using the drug.

For people who forget to take their medication, a pill box with daily compartments may be useful. Family members can help by filling the box and monitoring the person's medication use. Testing for medications in blood or urine is impractical because people who are reluctant to take their medications will be even more reluctant to submit to such tests.

A long-established solution is to inject an antipsychotic drug into a muscle in a shoulder or buttock every few weeks for gradual absorption. The technique is called depot (French for "deposit") medication. In addition to a few older antipsychotics, 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 Physicians and psychiatrists are sometimes hesitant to offer depot medication because it cannot be withdrawn quickly in case of troublesome side effects. People 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. In a 7-year study that reviewed the treatment of all people in Finland with a first hospitalization for schizophrenia, rates of rehospitalization were cut at least in half for those taking depot injections. 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. People who receive injections regularly will have periodic contact with someone who is caring for them. One survey found that people with schizophrenia actually prefer depot medication to standard oral dosing.

There are many ways to help people continue to take their medications and keep their appointments. The person and his or her family members can be instructed about medication side effects, especially the need to keep taking an antipsychotic 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 hospitalization. Motivational interviewing and training in problem-solving techniques may also be useful. Cognitive therapy can help people 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.

Preserving continuity

In the literature on the treatment of people with schizophrenia, "continuity of care" has become a recurrent turn of phrase, and it's understandable why. Studies show that people 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 is also recommended that members of a community treatment team visit the individual in the hospital before discharge, provide him or her with a telephone number, call the person after discharge and again to reschedule if he or she misses the first appointment. If necessary, they can also get in touch with relatives, call a supervised living facility, or visit the person in a home or group home. It's particularly helpful if some of the same people who care for the person 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 coordinates services and helps people 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 10 to 12 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 hospitalization.

Above all, people 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 cooperates with them and their families in making decisions.

Reconciling priorities

One of the obstacles to proper care of people with schizophrenia is that their priorities and the priorities of their 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.