Living with Schizophrenia

• Introduction to schizophrenia
• Living with schizophrenia
• The importance of medication compliance

• When should I consult my doctor?
• Tips for improving quality of life for patients and carers

Introduction to schizophrenia 

The term schizophrenia was first coined by Swiss psychiatrist Eugen Bleuler to describe the presence of schisms between thought, emotion and behaviour. Clinically, schizophrenia is a disturbance lasting for at least 6 months and including at least one month of at least two of the following:

• Delusions
• Hallucinations
• Disorganised speech
• Grossly disorganised or catatonic behaviour
• Negative symptoms

Living with schizophrenia

Schizophrenia remains one of the top causes of disability in the world, despite more than five decades of pharmacological and psychosocial interventions. The impairments faced by people with schizophrenia are widespread, affecting social, occupational and independent living activities. People with schizophrenia commonly have disabilities in partner relationships, work roles, social withdrawal, household participation, general interests, self care and social friction. These disabilities are especially common among young and middle aged adults, and occur even in people responding to treatment for psychosis.

A long term study looked at the change in social disability of people who had a first episode psychosis. It found that the level of social disability for a particular individual fluctuated with time, and many individuals experienced different levels of disability. About one third of the people involved in the study improved considerably over 15 years, and 40% had little or no disability at the end. However, one out of seven did not improve.

The importance of medication compliance

Several scientific studies have shown that most patients with schizophrenia are noncompliant with their medications. This means that they either do not take the correct dose of their medications, or do not take their medication regularly. Several studies have shown that 90% or more of schizophrenic patients do not take their medication as directed. There are various reasons why patients do not take their medication, including forgetting to pick up a refill, cost, or an intentional decision to not take medication.

Patients who do not take their medication as directed often experience poorer outcomes, including increased hospitalisation rates. A large study used information from pharmacists to identify patients who did not take their medication as directed. They found that patients with good compliance had the lowest rates of hospital admission. As compliance decreased, the rates of hospital admissions increased. Once admitted to hospital, those who were less compliant stayed longer in hospital. 

Medication Adherence Rating Scale
(MARS)

How closely you adhere to your medication plan affects the progression and outcome of your psychosis. The Medication Adherence Rating Scale (MARS) is a self-report measure of medication adherence in psychosis. Use the MARS tool to determine your willingness and ability to take oral medication every day.

		Yes	No
1.	Do you ever forget to take your medication?
2.	Are you careless at times about taking your medicine?
3.	When you feel better, do you sometimes stop taking your medicine?
4.	Sometimes if you feel worse when you take the medicine, do you stop taking it?
5.	I take my medication only when I am sick.
6.	It is unnatural for my mind and body to be controlled by medication.
7.	My thoughts are clearer on medication.
8.	By staying on medication, I can prevent getting sick.
9.	I feel weird, like a ´zombie´, on medication.
10.	Medication makes me feel tired and sluggish.

Results

This individual has scored  out of 10 on the adherence rating scale.

It is likely they are adhering to their schizophrenia medication.

This individual has scored  out of 10 on the adherence rating scale.
They are not adhering to the prescribed medication schedule.

References:

1. Thompson K et al. Schizophrenia Research 2000;42:241-7.
2. Fialko L, et al. Schizophrenia Research 2008;100:53-9.

When should I consult my doctor?

You should consult your doctor if you or someone close to you notices unusual behaviours that might indicate signs of early psychosis. There are programs, such as the Early Intervention in Psychosis (EIP), which use a range of approaches to intervene at the earliest opportunity. Early intervention helps to improve symptoms, functional capacity and quality of life. A recent review found this method effective in delaying transition to psychosis, reducing duration of untreated psychosis, preventing relapse, reducing hospital admissions and rates of suicide, and reducing treatment costs.

You should also consult your doctor if you are experiencing side effects from your medication, or are having difficulty taking your medication in a regular fashion. Some common side effects are:

• Sleepiness during the day, or feeling drugged or like a zombie
• Dizziness and/or fainting
• Irregular or unusually fast heartbeat
• Tense or jerky muscles and/or shaky hands or arms
• Restlessness
• Drooling or a dry mouth
• Blurry vision
• Difficulty passing urine
• Thirst
• Passing urine frequently or bed wetting
• Nausea
• Sore and swollen areas around your nipples, or fluid from your nipples
• Weight gain
• Problems enjoying sex
• Men: erectile difficulties
• Women: a change in periods over the past 3 months

Consult your doctor if you have any concerns related to schizophrenia, or any other health or mental conditions.

Schizophrenia Medication Tolerability Tool

This tolerability tool is based on a self-rating scale designed by Waddell and Taylor¹ to assess if you are experiencing undesirable side effects from your antipsychotic medication.

Male      Female 

Over the past week have you	Never	Once	A few times	Everyday	Tick this box if distressing
Felt sleepy during the day
Felt drugged or like a zombie
Felt dizzy on standing and/or fainted
Felt that you heart was beating irregularly or unusually fast
Had tense or jerky muscles
Had shaky hands or arms
Had restless legs and/or couldn´t sit still
Been drooling
Noticed your movements or walking being slower than usual
Had, or people have noticed uncontrollable movements of your face and/or body
Had blurry vision
Had a dry mouth
Had difficulty passing urine
Felt like you were going to be sick or have vomited
Wet the bed
Been thirsty and/or passing urine frequently
Had sore/swollen areas around your nipples
Noticed fluid coming from your nipples
Had problems enjoying sex
Had problems getting an erection
In the last 3 months have you noticed	No	Yes			Tick this box if distressing
A change in your periods
Weight gain

Tips for improving quality of life for patients and carers

There are several things that can be done to help reduce the impact of schizophrenia on your lifestyle. These include:

• Early diagnosis and comprehensive treatment of the first episode
• Comprehensive care, especially in the first 3–5 years following diagnosis. The course of illness is strongly influenced by what happens in this critical period.
• Antipsychotic medication
• Careful monitoring of side effects
• Psychosocial interventions should be routinely available to all patients and their families. These include:
  • Family interventions
  • Cognitive-behavioural therapy
  • Vocational rehabilitation
  • Therapy for comorbid conditions (e.g. substance abuse, depression, anxiety)
  • Other forms of therapy
• A positive social and cultural environment, including:
  • Adequate shelter
  • Financial security
  • Access to meaningful social roles
  • Availability of social support
• Tailoring of interventions to phase and stage of illness, and to gender and cultural background
• Maintenance of good physical health
• Quality medical care involving general practitioners and psychiatrists.

More information

For more information about schizophrenia and its treatments, videos and useful tools, see schizophrenia.

Reference

1. Sadock BJ, Kaplan HI, Sadock VA. Kaplan & Sadock's Synopsis of Psychiatry: Behavioral Sciences/Clinical Psychiatry [9th edition]. Philadelphia: Lippincott Williams & Wilkins; 1998.
2. First MB, Tasman A [eds]. DSM-IV-TR Mental Disorders: Diagnosis, Etiology and Treatment. Chichester: Wiley & Sons; 2004.
3. Murray CJ, Lopez AD. Global mortality, disability, and the contribution of risk factors: Global Burden of Disease Study. Lancet. 1997; 349: 1436-42.
4. Bowie CR, Reichenberg A, Patterson TL, Heaton RK, Harvey PD. Determinants of real-world functional performance in schizophrenia subjects: Correlations with cognition, functional capacity and symptoms. Am J Psychiatry. 2006; 163(3): 418-25.
5. Wiersma D, Wanderling J, Dragomirecka E, Ganev K, Harrison G, an der Heiden W, et al. Social disability in schizophrenia: Its development and prediction over 15 years in incidence cohorts in six European countries. Psychol Med. 2000; 30(5): 1155-67.
6. Harvey PD, Green MF, Keefe RS, Velligan DI. Cognitive functioning in schizophrenia: A consensus statement on its role in the definition and evaluation of effective treatments for the illness. J Clin Psychiatry. 2004; 65(3): 361-72.
7. Docherty JP, Grogg AL, Kozma C, Lasser R. Antipsychotic maintenance in schizophrenia: Partial compliance and clinical outcome. Presented at the 41st Annual Meeting of the American College of Neuropsychopharmacology. San Juan, PR: Dec 8-12, 2002.  
8. McCombs JS, Nichol MB, Stimmel GL, Shi J, Smith RR. Use patterns for antipsychotic medications in Medicaid patients with schizophrenia. J Clin Psychiatry. 1999; 60(Suppl 19): 5-11.
9. Valenstein M, Copeland LA, Blow FC, McCarthy JF, Zeber JE, Gillon L, et al. Pharmacy data identify poorly adherent patients with schizophrenia at increased risk for admission. Med Care. 2002; 40(8): 630-9.
10. Weiden PJ, Kozma C, Grogg A, Locklear J. Partial compliance and risk of rehospitalisation among California Medicaid patients with schizophrenia. Psychiatr Serv. 2004; 55(8): 886-91.
11. Glazer WM, Byerly MJ. Tactics and technologies to manage nonadherance in patients with schizophrenia. Curr Psychiatr Rep. 2008; 10(4): 359-69.
12. Patel MP, David AS. Medication adherence: Predictive factors and enhancement strategies. Psychiatry. 2007; 6(9): 357-61.
13. Ricciardi A, McAllister V, Dazzan P. Is early intervention in psychosis effective? Epidemiol Psichiatr Soc. 2008; 17(3): 227-35.
14. Waddell L, Taylor M. A new self-rating scale for detecting atypical or second-generation antipsychotic side effects. J Psychopharmacol. 2008; 22(3): 238-43.
15. Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of schizophrenia and related disorders. Aust N Z J Psychiatry. 2005; 39(1-2): 1-30.

Related Diseases:

• Schizophrenia

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Article Dates:

Modified: 4/3/2010

Created: 11/1/2009