The problem of compliance
Reprinted from "Medications" issue of Visions Journal, 2007, 4 (2), pp. 19-20
A Google search on “patient compliance” generates 5.5 million returns in 0.13 seconds. This speaks to the enormous concern of doctors, health care workers and patients about following treatment programs. From taking medications, to following through on recommended exercise programs, to doing homework for a psychotherapy program—compliance is a hot-button issue.
A commonly used definition of compliance is “the extent to which the patient’s behaviour (in terms of taking medications, following diets, or executing other lifestyle changes) coincides with medical recommendations.”1 Or, in simpler terms: patients doing what health professionals want them to do. These definitions seem somewhat paternalistic, and the term patient adherence is being used more often nowadays, given that “non-compliance” is often understood to mean irrational or wilful behaviour.
Compliance, or adherence, to treatment is an issue in all forms of medical treatment, not just in the mental health field. Research articles have focused on the difficulty of getting patients to adhere to treatment, whether for diabetes, heart disease or many other ailments. In this article, I focus on medication non-compliance.
The extent of the problem
Reports of medication non-compliance have varied from 80% to 20% in the scientific literature.2 The real-life problem of medication non-adherence for people with mental illness is enormous: non-adherence to treatment is the major cause of relapse in illness. Even relatively short gaps of medication treatment in patients with schizophrenia are linked to an increase in hospitalization.3
So how do we know if someone is not taking their medications? Research has uncovered a very interesting fact: doctors do not know when their patients are not adhering to medication programs. In one study, 95% of doctors thought their patients were treatment adherent, when in fact slightly less than 40% followed through precisely. More interestingly, in that same study, 67% of the patients thought they were adhering to treatment when in fact computer chips on their medication bottle showed that this was not the case.4-5
Other studies have shown that self-reported non-compliance (i.e., people admitting to not taking medication) is accurate, but self-reported adherence (i.e., people saying they are taking medication as prescribed) is not accurate.6-7 This shows that medication adherence is not just about patients arguing with their doctor about the need to take treatment; it is a much more complex problem. Sometimes the consumer is not aware of what is going on.
Why does this happen?
If treatment is effective and stops illness, why is there such a problem with taking it?
Common reasons include:
Not understanding how the medication should be taken—“I didn’t realize I had to take it all the time”
Not understanding why the medication should be taken—“I thought it was only for when I had hallucinations”
Misunderstandings—“I don’t want to become addicted to the medication”
Side effects—can be real or perceived (sometimes symptoms of the illness or a reason for the illness can be mistaken for a side effect)
Not seeing the treatment as helpful or necessary
Stigma—not wanting others to know that medication is being taken for a mental illness, and/or facing stigma from friends and relatives who have negative opinions about the illness and treatment
Financial—are the medications affordable?
Inconvenience—having to take this medication with food/without food/two hours after food/ four times a day/etc.
What can be done?
Research has been directed toward dozens of ideas, from simplifying medication routines, to telephone reminders, mail-in reminders, education groups, special packaging for medications and so on. The results are contradictory and show that there is no one reliable method. Not surprisingly, the best results come from the most personalized, intensive approaches.2,8
Contributing factors from the illness
In my experience, one of the common reasons for not wanting to take medications anymore is that the patient sees an improvement in their illness. The patient thinks that because they are feeling better they no longer need the treatment. For example, in a study of people being treated for post-traumatic stress disorder, patients who took antidepressants for less than a year had a much greater chance of relapse, even if they no longer had symptoms.9
With many mental illnesses, memory becomes a problem. Concentration and motivation may also be impaired. When this happens, simplifying the medication routine is essential. Once-daily medications, blister packing or dosettes† are possible solutions. Reminders from family members or mental health professionals are also helpful.
If there is psychotic illness, it can add other factors as well. For example, if there are remaining positive† symptoms like delusions or hallucinations or thought confusion, sticking to a treatment schedule can be challenging.
Another factor is lack of insight or self-awareness that one has a mental illness. This may be due to a variety of factors: symptoms of the illness that affect thinking and judgment, denial or differing beliefs about the cause of the illness or the reasons for improvement.
Contributing factors from the medication
The nature of medications can also make it difficult to keep taking them. Side effects are often cited as a reason for stopping treatment. Some side effects only become apparent over time. Other side effects are present early on and dissipate with time. Because we live in such a “quick fix” society, many people become frustrated when they experience side effects before the benefits of the medication take effect. And in some cases, other medications need to be added to control side effects that linger.
The way medications are prescribed can be important. Fewer doses during the day or depot injections† may be helpful. The most important factor, however, is that the patient is involved in deciding how medications will be taken, and that they understand how to take them properly.
It is imperative that patients understand why medication is required, how long medication is required, and what the benefits and side effects are.
People vary in what they want to know about their medications. For some, knowledge about potential side effects is not at all helpful, while others feel prepared when informed. Besides differing amounts of information being appropriate for different people, differing amounts of information may be appropriate at different stages of the illness. For some patients, hearing the long lists of every possible side effect of their medication can be overwhelming. A good relationship with a health professional who can explain or reassure is crucial.
Patients should know what resources are available to them. They should also know who is an appropriate support. Are family members helpful, or are they perceived as nags? Patients should try new strategies, such as setting a timer as a reminder. Cell phones and wrist watches can be invaluable aids.
Patients should know what to do if any problems arise. Do they know what to do if they begin to experience side effects? Do they know what to do if they miss a dose of their medication?
Not complying with medication can lead to relapse of symptoms, a reduction in quality of life and increased suffering. Armed with knowledge and ideas, the road to recovery can be much smoother and quality of life greatly improved.
About the authorFiona is a psychiatrist in Vernon and Salmon Arm. She trained in psychiatry in Glasgow, Scotland, and her interest is in mental health service delivery. Fiona is vice-chair of the BC Alliance on Mental Health and Addiction Services, which advocates for better mental health services.
Haynes, R.B., Taylor, D.W. & Sackett, D.L. (1979). Compliance in health care. Baltimore: Johns Hopkins University Press.
Awad, A.G. (2004). Antipsychotic medications: Compliance and attitudes towards treatment. Current Opinions in Psychiatry, 17(2), 75-80.
Weidan, P.J., Kozma, C., Grogg, A. et al. (2004). Partial compliance and risk of rehospitalization among California Medicaid patients with schizophrenia. Psychiatric Services, 55(8), 886-891.
Diaz, E., Levine, H.B., Sullivan, M.C. et al. (2001). Use of the medication monitoring event system to estimate medication compliance in patients with schizophrenia. Journal of Psychiatry and Neuroscience, 26(4), 325-329.
Remington, C.J. & Collins, A. (2001, October). Video workshop: An educational intervention to enhance compliance in schizophrenia. Program and abstracts, American Psychiatric Association 53rd Institute on Psychiatric Services, Orlando, FL.
Rickels, K. & Briscoe, E. (1970). Assessment of dosage deviation in outpatient drug research. Journal of Clinical Pharmacology and the Journal of New Drugs, 126, 113-115.
Boczkowski, J.A., Zeichner, A. & DeSanto, N. (1985). Neuroleptic compliance among chronic schizophrenia outpatients: An intervention outcome report. Journal of Consulting and Clinical Psychology, 53, 666-671.
Peterson, A.M., Takiya, L. & Finley, R. (2003). Meta-analysis of trials of interventions to improve medication adherence. American Journal of Health-System Pharmacy, 60(7), 657-665.
Davidson, J., Pearlstein, T., Londberg, P. et al, (2001). Efficacy of sertraline in preventing relapse of posttraumatic stress disorder: Results of a 28-week double blind trial, placebo-controlled study. American Journal of Psychiatry, 158, 1974-1981.