Living with schizophrenia

Despite more than fifty years of advances in the treatment of schizophrenia, it remains one of the top causes of disability in the world. Patients often experience disability in the areas of social, occupational and independent living activities. 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.

A long term study looked at the change over time of social disability in patients with a first psychotic episode. It showed that the level of social disability fluctuates, and many patients change between different levels of disability. Approximately one third of patients improved considerably over the 15 year study, and 40% of patients had little or no disability at the end. However one out of seven patients did not improve.

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."

Click here to watch a video on schizophrenia patients talking about symptoms.

A major barrier to treating schizophrenia effectively are those patients who do not take their medication regularly or at the correct dose. Studies have shown that the number of schizophrenic patients not taking their medication as directed may be higher than 90%. This can be for a number of reasons, including forgetting to pick up a refill, cost, or an intentional decision to not take medication.

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?" 

In regards to improving compliance Ms Hocking said, "If you have a good rapport with your doctor, and they help you understand what the illness is, what the treatment is and give you education and support, you’re more likely to cooperate with treatment. If you have treatment that doesn’t present you with distressing side effects, you’re more likely to continue to take it. However, when people just do not understand that they are unwell, that’s where the skills are needed from mental health workers and support both from and for the family."

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 those patients not taking 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 poorly compliant stayed in hospital longer. 

Patients are strongly encouraged to consult their doctor if they or someone close to them notices unusual behaviours that might indicate signs of early psychosis. There are programs, such as 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.

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."

Patients should also consult their doctor if they are experiencing side effects from their medication, difficulty taking their medication regularly, or if they have other concerns related to their schizophrenia or any other health or mental condition. An online tool is available to determine if patients are experiencing side effects from their antipsychotic medication:

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.

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."

There are several things that can be done in an attempt to reduce the impact of schizophrenia and improve long term outcomes.  These include:

• Early diagnosis and comprehensive treatment of the first episode
• Comprehensive care, especially for the initial 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 and other forms of therapy, including for comorbid conditions, such as substance abuse, depression and anxiety.
• A positive social and cultural environment, including adequate shelter, financial security, access to meaningful social roles and availability of social support
• All interventions should be tailored 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.

Click here to watch a video on patients talking about treatments.

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.