Are you a Health Professional? Jump over to the doctors only platform. Click Here

Living with schizophrenia

Print Friendly, PDF & Email

Despite more than fifty years of drug and psychosocial therapies, schizophrenia remains one of the top causes of disability in the world.1 Patients often experience disability in the areas of social, occupational and independent living activities.2 Most affected are young and middle aged adults, and disabilities in partner relationships, work roles, social withdrawal, household participation, general interests, self care and social friction are common.3 Some believe that the disability associated with schizophrenia has remained largely unchanged, as aspects of the disease such as cognitive impairment and negative symptoms have remained largely untreated.4

Long term follow up of patients with first onset psychosis has shown that the level of social disability fluctuates over time. Roughly one third of patients improve considerably from baseline levels, with 40% having little or no disability after a 15 year period. However, for as many as one out seven patients, disability levels did not improve. For those patients who did not show signs of improvement early in the course, only a small number (10%) showed signs of improvement later.3 It is now recognised that the course of illness is strongly influenced by the initial 3–5 years following diagnosis.5

Barbara Hocking, Executive Director of SANE Australia, a national charity working to improve the lives of people with mental illness, said one of the main social disabilities faced by people with schizophrenia is the feeling of loneliness. She said, "this relates to the stigma that they perceive, and most of that is real, as well as the fact that they are often on pensions so don’t have a lot of money or opportunities to meet people. It’s not to do with the symptoms generally, but rather is a consequence of the illness. It happens when your symptoms are not being effectively managed and that is the case a lot of the time because we don’t have good enough treatments yet for people with schizophrenia. While we are treating people in the community now, we’re still not making it possible for them to fully participate in what the community offers."

 Play video on patients learning to live with schizophrenia.

Click here to watch a video on patients learning to live with schizophrenia.

 

A major barrier to effective treatment is noncompliance. Some studies suggest that the levels of partial compliance among schizophrenic patients may be as high as 90%, and perhaps even higher.6,7 Problems with medication adherence can be due to a variety of reasons, including cognitive dysfunction, systems barriers or an intentional decision not to take medication, though it should be noted that this does not necessarily reflect the efficacy of the treatment, nor the patient’s attitude to medical therapy.8

Ms Hocking said the most common single reason "that people with an illness like schizophrenia don’t take medication, is because many are unable to understand that they’re ill. It’s as simple as that. There’s a name: anosognosia, a lack of awareness of their illness. A lot of people say ‘there’s nothing wrong with me, you’re the one who’s got a problem.’ So if you don’t understand that you’re ill why would you take medication?" 

The potentially large numbers of patients who are noncompliant with their antipsychotic medications often experience poorer treatment outcomes, including increased hospitalisation rates.8,9 A large cohort study (n=67,079) used pharmacy data to identify those patients with schizophrenia who had poor antipsychotic compliance. The Medication Possession Ratio (MPR) was calculated as the number of days’ supply of antipsychotic received from outpatient pharmacy. divided by the number of days’ supply needed for continuous outpatient antipsychotic use. A multivariate regression was performed to examine the relationship between MPR and psychiatric admission. The authors found that patients with MPRs approximating 1.0 had the lowest rates of admission. As MPRs decreased, the rates of hospital admissions rose. Patients on one antipsychotic with poor adherence (MPR < 0.8) were 2.4 times more likely to be admitted to hospital than those with good compliance (MPRs 0.8–1.1). Once admitted, poorly compliant patients stayed in hospital for more days. Patients receiving excess medication (MPR > 1.1) also had greater admission rates.9


While it was anticipated that the introduction of second generation antipsychotics (SGAs) would lead to increased medication compliance, the evidence so far is conflicting at best.10 Several studies have compared medication compliance between patients receiving first generation antipsychotics (FGAs) and those receiving SGAs with mixed results. Of 14 such studies examined by Glazer and Byerly,10 five showed SGAs to be statistically superior to FGAs, two found the opposite, one demonstrated a nonsignificant trend in favour of SGAs, and six found no statistical differences in the adherence behaviours for the two groups of drugs. Despite these findings, one cannot ignore that drug tolerability is still a major influence on compliance, and patients commonly report adverse antipsychotic side effects as reasons for noncompliance.11 Hence, the Royal Australian and New Zealand College of Psychiatrists recommend in their clinical practice guidelines for the treatment of schizophrenia that SGAs should be the treatment of choice for most patients, due to their superior tolerability and the reduced risk of tardive dyskinesia.5 

 Play video on the first signs of schizophrenia experienced by patients.

Click here to watch a video on the first signs of schizophrenia experienced by patients.

 

In an attempt to improve patients’ symptoms, functional capacity and quality of life, the Early Intervention in Psychosis program (EIP) makes use of a multidisciplinary team to intervene at the earliest opportunity of signs of psychosis. While there has been some debate concerning whether or not the efficacy of this approach justifies the associated costs, a recent review found preliminary evidence to support the effectiveness of EIP in delaying transition to psychosis, reducing duration of untreated psychosis, preventing relapse, reducing hospital admissions and rates of suicide, and reducing treatment costs.12 It is therefore critical that patients are advised to contact their doctor if they or someone close to them suspect signs of early psychosis. Patients should also be advised to contact their doctor if they are experiencing side effects from their medication, have difficulty taking their medication regularly and in the correct dose, or have any concerns related to their schizophrenia or any other health or mental condition.

Ms Hocking said, "We would encourage the general community to be aware of what the early signs of illness are, then to seek help early and get help early. So there are three steps needed. What tends to happen at the moment is that before the first episode, people have no idea about what the signs of psychosis would be. When things get problematic, they may be persuaded to go for help, only to be turned away, as the system is not resourced well enough to respond to early stages of illness. There are several barriers that need to be overcome; better community awareness, less stigma associated with the illness so people may feel better about acknowledging there may be a problem, and then we need to have a system that provides services for people early in the course of their illness and not just to be crisis driven, only responding when there’s a really dramatic crisis."

If patients are concerned with the side effects they may be experiencing from their antipsychotic medication, an online tool is available:

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.

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 youNeverOnceA few timesEverydayTick 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 noticedNoYes  Tick this box if distressing
A change in your periods  
Weight gain  

Results

Absent/mild side effects

You may be experiencing side effects from your current medication. It would be advisable to discuss this with your GP or psychiatrist to discuss your medication options. Medicating with minimal side effects is optimal to ensure correct use and prevention of relapse.

Moderate side effects

You are experiencing what may be side effects from your current medication. You should discuss this with your GP or psychiatrist to discuss your medication options. Medicating with minimal side effects is optimal to ensure correct use and prevention of relapse.

Severe side effects

You are experiencing what may be side effects from your current medication. Discuss this with your GP or psychiatrist to discuss your medication options. Medicating with minimal side effects is optimal to ensure correct use and prevention of relapse.

It seems that one or more of the side effects you are experiencing is distressing you. You may like to discuss this with your doctor to see if there are any other medications and/or doses that better suit your situation.

Reference

  1. Waddell L, Taylor M. A new self-rating scale for detecting atypical or second-generation antipsychotic side effects. J Psychopharmacol 2008; 22: 238-243.

This tool needs Javascript enabled to run.

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.

Over the past week have youNeverOnceA few timesEveryday
Felt sleepy during the day0123
Felt drugged or like a zombie0123
Felt dizzy on standing and/or fainted0123
Felt that you heart was beating irregularly or unusually fast0123
Had tense or jerky muscles0123
Had shaky hands or arms0123
Had restless legs and/or couldn´t sit still0123
Been drooling0123
Noticed your movements or walking being slower than usual0123
Had, or people have noticed uncontrollable movements of your face and/or body0123
Had blurry vision0123
Had a dry mouth0123
Had difficulty passing urine0123
Felt like you were going to be sick or have vomited0123
Wet the bed0123
Been thirsty and/or passing urine frequently0123
Had sore/swollen areas around your nipples0123
Noticed fluid coming from your nipples0123
Had problems enjoying sex0123
Had problems getting an erection0123
In the last 3 months have you noticedNoYes  
A change in your periods (Women only)03  
Weight gain03  

Results

Total: 0 – 21

Absent/mild side effects

You may be experiencing side effects from your current medication. It would be advisable to discuss this with your GP or psychiatrist to discuss your medication options. Medicating with minimal side effects is optimal to ensure correct use and prevention of relapse.

Total: 22 – 42

Moderate side effects

You are experiencing what may be side effects from your current medication. You should discuss this with your GP or psychiatrist to discuss your medication options. Medicating with minimal side effects is optimal to ensure correct use and prevention of relapse.

Total: 43 and over

Severe side effects


You are experiencing what may be side effects from your current medication. Discuss this with your GP or psychiatrist to discuss your medication options. Medicating with minimal side effects is optimal to ensure correct use and prevention of relapse.

Distress

If one or more of the side effects you are experiencing is distressing you, you may like to discuss this with your doctor to see if there are any other medications and/or doses that better suit your situation.

Reference

  1. Waddell L, Taylor M. A new self-rating scale for detecting atypical or second-generation antipsychotic side effects. J Psychopharmacol 2008; 22: 238-243.

This information will be collected for educational purposes, however it will remain anonymous.

Ms Hocking said, "The common side effects of medication are often related to sleeping patterns and nausea, but for some people then there’s the much less common but more dramatic and major ones. Depending on the medication and on the person they vary, but with the typical antipsychotics the very concerning side effects are the movement side effects and tardive dyskinesia. With the new class of medications another group of side effects are coming to the fore, called metabolic syndrome. With this, people have increased risks of diabetes and heart disease and the concerns about that are really just now starting to hit services. So all medications have got some side effects. What we’re now asking for is regular monitoring for all people on antipsychotic medication, to pick up any early signs of problems, including diabetes and heart problems."

The Royal Australian and New Zealand College of Psychiatrists recognises that, despite a new generation of drug therapies and progressive neuroscientific advances, the increased potential for improved outcomes and quality of life has not been translated into reality in Australia.5 It issued clinical practice guidelines for the treatment of schizophrenia and related disorders in an attempt to reduce the impact of schizophrenia. The essential features of the guidelines are as follows:5

  1. Early detection and comprehensive treatment of first episode cases is a priority, as the psychosocial and possibly biological impact of illness can be minimised and outcome improved. An optimistic attitude on the part of health professionals is an essential ingredient from the outset and across all phases of illness.
  2. Comprehensive and sustained intervention should be assured during the initial 3–5 years following diagnosis, since course of illness is strongly influenced by this critical period. Patients should not have to ‘prove chronicity’ before they gain consistent access and tenure to specialist mental health services.
  3. Antipsychotic medication is the cornerstone of treatment. These medicines have improved in quality and tolerability, but should still be used cautiously and in a more targeted manner than in the past. The treatment of choice for most patients is now the novel antipsychotic medication, due to the superior tolerability and reduced risk of tardive dyskinesia. This is particularly so for the first episode patient, for whom novel agents are the first, second and third line choice. These novel agents are associated with potentially serious medium to long term side effects of their own, for which patients must be carefully monitored. Conventional antipsychotic medications in low dosage may still have a role in a small proportion of patients, where there has been full remission and good tolerability; however, the indications are shrinking progressively. These principles are now accepted in most developed countries.
  4. Clozapine should be used early in the course, as soon as treatment resistance to at least two antipsychotics has been demonstrated. This usually means incomplete remission of positive symptoms, but clozapine may also be considered where there are pervasive negative symptoms or significant or persistent suicidal risk.
  5. Comprehensive psychosocial interventions should be routinely available to all patients and their families, and provided by appropriately trained mental health professionals with time to devote to the task. This includes family interventions, cognitive-behavioural therapy, vocational rehabilitation and other forms of therapy, especially for comorbid conditions, such as substance abuse, depression and anxiety.
  6. The social and cultural environment of people with schizophrenia is an essential arena for intervention. Adequate shelter, financial security, access to meaningful social roles and availability of social support are essential components of recovery and quality of life.
  7. Interventions should be carefully tailored to phase and stage of illness, and to gender and cultural background.
  8. Genuine involvement of consumers and relatives in service development and provision should be standard.
  9. Maintenance of good physical health and prevention and early treatment of serious medical illness has been seriously neglected in the management of schizophrenia, resulting in premature death and widespread morbidity. Quality of medical care for people with schizophrenia should be equivalent to the general community standard.
  10. General practitioners (GPs) should always be closely involved in the care of people with schizophrenia. However, this should be truly shared care. Sole care by a GP with minimal or no specialist involvement, while very common, is not regarded as an acceptable standard of care. Optimal treatment of schizophrenia requires a multidisciplinary team approach with a consultant psychiatrist centrally involved.
 Play video on the importance of support for schizophrenia patients.

Click here to watch a video on the importance of support for schizophrenia patients.

References

  1. Murray CJ, Lopez AD. Global mortality, disability, and the contribution of risk factors: Global Burden of Disease Study. Lancet. 1997; 349: 1436-42.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.  
  7. 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.
  8. 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.
  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. Glazer WM, Byerly MJ. Tactics and technologies to manage nonadherance in patients with schizophrenia. Curr Psychiatr Rep. 2008; 10(4): 359-69.
  11. Patel MP, David AS. Medication adherence: Predictive factors and enhancement strategies. Psychiatry. 2007; 6(9): 357-61.
  12. Ricciardi A, McAllister V, Dazzan P. Is early intervention in psychosis effective? Epidemiol Psichiatr Soc. 2008; 17(3): 227-35.

Print Friendly, PDF & Email

Dates

Posted On: 12 January, 2009
Modified On: 4 June, 2014

Tags



Created by: myVMC