Internet Mental Health

Recovery From Schizophrenia

Individuals with schizophrenia and their families have defined that recovery from schizophrenia should involve:

  • Functional (occupational and social) remission:

    • "Employment/education: Returning to work/school/homemaking."

    • "Fulfilment of duties and responsibilities: Sons or daughters being loving, helping with housework, and attending social gatherings. In addition, husbands financially supporting their families, and wives taking care of their children and doing the expected homemaking."

    • "Independent functioning: Taking care of their personal needs without being dependent on or having the help/assistance of others."

    • "Social functioning: Socializing and having meaningful interpersonal relationships: having social skills (having manners, e.g., greeting others); having friends to talk to or spend time with; attending and participating in family and social functions; getting married; being reunited with or repairing broken relationships with spouses and family members."

  • Symptomatic remission:

    • "Symptom control: Eliminating hallucinations (hearing voices), delusions, negative emotion (fear) and the aches and pains caused by schizophrenia. In addition, their caretakers want elimination of the anger, physical abuse, wandering and inappropriate laughter caused by schizophrenia."

    • "Cognitive ability: Overcoming cognitive impairment: being less confused; being able to remember things and being less forgetful (e.g., with respect to their day to day tasks); being able to concentrate on or pay attention to their work, household tasks or to conversations with other people; and being alert, with a sharp mind."

    • "Activity: Overcoming apathy (a core feature of schizophrenia) by: "not being lazy or sleeping all the time"; following a routine (e.g., waking up/eating on time); exercising and being fit; keeping busy (e.g., pursuing hobbies such as reading or making handicrafts); being engaged in some form of productive tasks (e.g., cooking, cleaning or other housework) and performing these satisfactorily."

    • "Self-care: Taking care of their own health and maintaining good hygiene practices. Examples include taking medicines on their own without being persuaded or reminded to; informing others when feeling unwell; sleeping well and having healthy eating habits (e.g., having a good appetite and eating proper meals); bathing regularly and being clean; taking care of personal and household belongings; not smoking cigarettes or inhaling tobacco; and maintaining a neat and groomed appearance by combing one's hair and dressing appropriately."

    • "Overcoming negative personality traits" (to be less schizoid or paranoid): "Being less socially withdrawn and insensitive; being more self-confident; being less suspicious; not bearing grudges or feeling victimized."

    • "Reduced side-effects: (Antipsychotic medications do differ significantly in their side-effects; hence it is possible to reduce side-effects.)"

    • "Management without medication: (Unfortunately this is not possible because of the high relapse rate off of antipsychotic medication.)"

The above definition of recovery is much more meaningful than the usual outcome measures used in research. Most of the outcome measures used in schizophrenia research (like "20% decrease in the total PANSS score") have little or nothing to do with a patient's quality of life, occupational or social functioning. Yet improvement in quality of life, occupational and social functioning are the outcomes that matter most to patients and their families. The problem with using somewhat meaningless outcome measures (like "proportion of patients remaining in the study") is that this approach gives artificially high placebo response rates.

Placebo response rate

Example Of A Meaningless Outcome Measure

Unfortunately, current treatment of schizophrenia seldom results in full recovery. For first-episode patients with schizophrenia, 32% achieved symptomatic remission at 6-month follow-up, but only 11% achieved functional (occupational and social) remission. For first-episode patients with schizophrenia, on 5-year follow-up, 15.7% were fully recovered. For early-onset schizophrenia (median age 16), on 15-year follow-up, 85% had at least one rehospitalization, 8% were fully recovered, 56% had a moderate outcome, and 36% had a poor outcome.

Schizophrenia is often an episodic disorder characterized by patients going in and out of symptomatic remission. Patients often improve on antipsychotic medication; then stop their antipsychotic medication because they feel "cured". However, in a year or two (or even a few weeks), their psychosis returns which forces them to restart their antipsychotic medication. In a few years, they again feel they are "cured", and again stop their medication - only to have their psychosis return again, and require antipsychotic medication. This cycling on and off antipsychotic medication commonly goes on for decades.

Researchers often make the error of assuming that, because certain patients are off antipsychotic medication and doing well, that these medication-free patients don't need antipsychotic medication. These researchers fail to appreciate that these apparently recovered, unmedicated patients may just be in an interlude between their psychotic episodes. To prove that certain individuals with schizophrenia don't need lifelong antipsychotic medication; researchers would have to prove that some patients fully recover and stay well for years after stopping their antipsychotic medication. Such a long-term followup study of patients off their antipsychotic medication hasn't been done.

The first 5 years after psychotic onset are the worst, and have a high risk for relapse, rehospitalization and suicide. As many as two-thirds of completed suicides in schizophrenia occur within six years of diagnosis. After 5-10 years, schizophrenia tends to reach a plateau of psychopathology, with as many patients tending to improve in the long-term as those who tend to show further deterioration. Several factors have been associated with poor long-term outcomes in schizophrenia: prolonged untreated psychosis, social isolation, illicit drug use, insidious onset, living in industrialized countries, immigration, lack of affective symptoms, non-adherence to medications, the presence of early negative symptoms, and cognitive dysfunction.

Schizophrenia: 10 year follow-up

Schizophrenia Recovery At 10-Year Follow-up

Antipsychotic medication is absolutely essential for the treatment of schizophrenia. Also essential are social support programs (e.g., drop-in centers/clubhouses, sheltered employment, subsidized/supervised housing, free medication, disability pensions). If a patient needs psychiatric hospitalization; antipsychotic medication usually ensures that the patient will be discharged home within a month. Most nations permit patients to be involuntarily hospitalized if they are at risk of harming themselves or others, or if they have serious self-neglect. Some nations have outpatient commital laws which compel potentially dangerous outpatients with schizophrenia to stay on their medication or face immediate involuntary repeat hospitalization.

Why not close all psychiatric hospitals and just treat individuals with schizophrenia in the community? This was actually tried in Italy and Denmark, and it was a disaster. In 1999, Denmark tried to quickly downsize its psychiatric hospitals and this subsequently caused a 100% increase in suicide, and a doubling of the rates of criminal acts committed by psychotic patients. In addition, this "deinstitutionalization" policy caused increases of 80 to 100% in acute hospital admissions for psychotic patients.

Unfortunately, at least 50% of individuals with schizophrenia refuse to stay on their medication. After a few weeks or months off medication; the psychotic phase of schizophrenia usually returns. A minority of patients can go off antipsychotic medication, and not suffer a psychotic relapse. However, even though not psychotic, these medication-free patients usually are significantly impaired due to "residual symptoms" of their untreated schizophrenia. Thus it would be a mistake to consider these patients totally recovered.

Since so many individuals with schizophrenia refuse to take their oral antipsychotic medication, these oral medications are being replaced by long-acting injectable antipsychotic medications that last 2-4 weeks between injections. Once patients have been stabilized on oral antipsychotic medication; they can be switched over to these long-acting injectable antipsychotic drugs. Long-acting injectable medication improves the complance rate (i.e., percentage of patients staying on medication); hence improves treatment benefit.

It has been difficult to compare the effectiveness of different treatments for schizophrenia because there hasn't been a consensus on what constitutes "recovery" in schizophrenia. Recently, the symptoms that are the best indicators of recovery or relapse in schizophrenia have been identified (using the 78-item Internet Mental Health Quality of Life Scale). Recovery in schizophrenia could be defined as the total disappearance of these indicators. Likewise, relapse could be defined as an increase in these indicators.

Good News: Staying On Antipsychotic Medication For Years Really Works

All of the patients with inactive schizophrenia in this study were continuously treated with antipsychotic medication for many years. By faithfully staying on their antipsychotic medication, these patients with inactive schizophreia had a relative absence of psychotic symptoms, cognitive impairments, and schizoid or paranoid behaviors.

This study identified the symptoms that differentiate active (i.e., moderate/severe) schizophrenia from inactive (mild/in remission) schizophrenia (using the Internet Mental Health Quality of Life Scale).
  • Occupational and social symptoms in schizophrenia:
    • #11. Having few or no close friends (active schizophrenia=78%, inactive schizophrenia=38%)
    • #12. Mistrust of people in general (active schizophrenia=45%, inactive schizophrenia=9%)
    • #13. Inability to live independently (active schizophrenia=47%, inactive schizophrenia=15%)
    • #15. No competitive employment (active schizophrenia=81%, inactive schizophrenia=34%)
    • #16. Not doing expected housekeeping (active schizophrenia=47%, inactive schizophrenia=8%)
    • #17. Requiring financial assistance (active schizophrenia=79%, inactive schizophrenia=35%)
    • #25. Fears leaving home without a companion (active schizophrenia=13%, inactive schizophrenia=1%)
    • #51. Poor overall psychosocial functioning (active schizophrenia=79%, inactive schizophrenia=13%)
    • #56. Submissiveness (active schizophrenia=36%, inactive schizophrenia=15%)
    • #58. Intimacy avoidance (active schizophrenia=62%, inactive schizophrenia=19%)
    • #59. Social withdrawal (active schizophrenia=38%, inactive schizophrenia=11%)
    • #60. Lack of emotional expressiveness (active schizophrenia=29%, inactive schizophrenia=12%)
    • #70. Being suspicious of family and friends (active schizophrenia=40%, inactive schizophrenia=10%)
    • #72. Feeling victimized (active schizophrenia=24%, inactive schizophrenia=10%)
    In this study, 71% of all individuals with schizophrenia remained single, and there was no difference in this regard between those with active or inactive schizophrenia. 71% of individuals with active schizophrenia were disabled compared to 27% of those with inactive schizophrenia.

    These findings illustrate just how profoundly schizophrenia impairs an individual's social functioning, and why many individuals with schizophrenia find it so difficult to live independently. Thus there is a real need for community services which assist patients to live independently. For the many patients that can't live independently, there is a major need for psychiatric group homes in which patients can live in the community in a sheltered environment under professional supervision.

    The most outstanding symptom of schizophrenia is unemployment; 81% of individuals with active schizophrenia did not have competitive employment. Even 34% of patients with inactive schizophrenia had no competitive employment. This unemployment is directly the result of the psychotic symptoms and cognitive impairments caused by schizophrenia. Many individuals with active schizophrenia find it very difficult to do even full-time sheltered employment. Patients with schizophrenia need employment, but their employment must be tailored to their level of disability.

    Almost the majority of individuals with active schizophrenia had much/severe difficulty doing their expected housekeeping. 70% of individuals with active schizophrenia were on some form of financial assistance, and 8% lived in poverty. In contrast, housekeeping impairment and need for financial assistance were much less prevalent in individuals with inactive schizophrenia.

    Schizophrenia alters personality, and makes individuals more schizoid. Thus those with active schizophrenia had abnormal submissiveness (36%), intimacy avoidance (62%), social withdrawal (39%), and lack of emotional expression (29%).

    Schizophrenia also makes people more paranoid. Thus those with active schizophrenia felt victimized (24%) and had suspiciousness directed at family and friends (40%).

    These schizoid and paranoid behaviors were uncommon in patients with inactive schizophrenia.
  • Psychotic and cognitive symptoms of schizophrenia:
    • #37. Grandiosity (active schizophrenia=9%, inactive schizophrenia=0%)
    • #38. Delusions or hallucinations (active schizophrenia=63%, inactive schizophrenia=2%)
    • #39. Conceptual disorganization (active schizophrenia=13%, inactive schizophrenia=0%)
    • #40. Distractibility (active schizophrenia=70%, inactive schizophrenia=7%)
    • #41. Apathy (active schizophrenia=69%, inactive schizophrenia=14%)
    • #42. Forgetfulness (active schizophrenia=58%, inactive schizophrenia=9%)
    • #43. Impaired executive functioning (active schizophrenia=65%, inactive schizophrenia=15%)
    • #44. Impaired social communication (active schizophrenia=18%, inactive schizophrenia=0%)
    • #50. Lack of insight (active schizophrenia=34%, inactive schizophrenia=1%)
    The majority (63%) of individuals with active schizophrenia had much/severe difficulty with delusions and hallucinations. The cognitive impairments in active schizophrenia are just as crippling as the psychotic symptoms. 70% of individuals with active schizophrenia had much/severe difficulty with distractibility. That's why many of them reported that they stopped reading because they just couldn't concentrate.

    Severe apathy (with inability to initiate and persist in goal-directed activities) affected 69% of the individuals with active schizophrenia. Neurologically, damage of the basal ganglia can produce apathy. If schizophrenia is not treated with antipsychotic medication, this illness eventually results in some patients becoming mute and motionless. You can see these unfortunate individuals sitting all day, silent and motionless, at bus stops. This tragic condition mirrors exactly the avolitional state known to be associated with severe damage to the prefrontal cortex-basal ganglia circuits of the brain.

    Of those individuals with active schizophrenia; 58% had much/severe difficulty with forgetfulness, 65% had impaired executive functioning (causing impaired planning and problem-solving), 18% had impaired social communication (with their responses limited to very few words), and 34% partially/totally refused help because of their lack of insight.

    These cognitive impairments were uncommon in patients with inactive schizophrenia.

    This study showed that, even in individuals with inactive schizophrenia, there are significant "residual" symptoms of schizophrenia.
  • Residual symptoms of schizophrenia seen in individuals with inactive schizophrenia:
    • #11. Having few or no close friends (inactive schizophrenia=38%)
    • #13. Inability to live independently (inactive schizophrenia=15%)
    • #15. No competitive employment (inactive schizophrenia=34%)
    • #17. Requiring financial assistance (inactive schizophrenia=35%)
    • #41. Apathy (inactive schizophrenia=14%)
    • #43. Impaired executive functioning (inactive schizophrenia=15%)
    • #56. Submissiveness (inactive schizophrenia=15%)
    • #58. Intimacy avoidance (inactive schizophrenia=19%)
    Individuals with inactive schizophrenia may mistakenly be seen as being recovered since they no longer have psychotic symptoms. Yet many of these individuals with inactive schizophrenia are very disabled by their residual symptoms. Thus it would be a serious mistake to call these individuals recovered (as some researchers have done).

    Other research has shown that at least 50% of patients with schizophrenia continue to experience psychotic symptoms more than 10 years after onset. At least 70% of individuals with schizophrenia are not competitively employed, are single, and have a poor level of psychosocial functioning 10 years after first admission.

    One of the core features of schizophrenia is lack of insight; thus it is extremely difficult to convince psychotic individuals lacking insight to stay on their antipsychotic medication. Nearly half of patients drop out prematurely from pharmaceutical research studies. Since every patient who prematurely drops out of a research study is technically a treatment failure, these high attrition rates make it very difficult to prove that treatments are effective.

    After each psychotic relapse, individuals may improve by restarting their antipsychotic medication, but most never totally return to their pre-relapse level of psychosocial and cognitive functioning. Thus it is essential that individuals with schizophrenia stay on their antipsychotic medication for their lifetime.

    Back to Schizophrenia
    Internet Mental Health 1995-2019 Phillip W. Long, M.D.