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Around 400 B.C., Hippocrates observed that patients often lie about whether or not they are taking prescribed medication, and cautioned his physicians to be alert to this fact. Unfortunately, more than 2000 years later, compliance is still a problem for patients and their providers.
The most common definition for a compliant patient is one who is actively engaged in participating in their own care, in close collaboration with their health care providers. It implies a scrupulous adherence to medical regimens (including dosages, frequency, and associated dietary requirements), attendance at all scheduled appointments, and a continual flow of dialogue between medical personnel and the patient.
Compliance is a loaded term (fraught with connotations of coercion), and others have arisen alongside it, including adherence, therapeutic alliance, and mutuality. Whatever it is called, it is vitally important to anyone undergoing a liver transplant, as well as to their caregivers, social support systems, and medical providers. This is because the consequences of non-compliance can be devastating.
Noncompliance isn't just missing your liver transplant medications. Here are some things (a list that is by no means complete) that would constitute non-compliance, and that could adversely affect your short- or long-term outcome:
When someone's health, and often their very survival, is at stake, it is hard to imagine why they wouldn't follow their doctors' instructions, and why they wouldn't take an active role in their own care. Yet study after study reports noncompliance in a great number of patients. For instance, in a study conducted in the early 1990s, up to 50 percent of hemodialysis patients were reported to be non-compliant with at least part of their regimen (1). In another, more recent study, 23 percent of patients infected with the hepatitis C virus and on interferon therapy (17 of 74 being observed) "fulfilled the criteria of noncompliance," including seven patients who self-terminated the treatment altogether without notifying their physician (2).
Before we discuss some of the reasons for non-compliance, let's make an important distinction. It is commonly accepted wisdom that 99 percent of long-term care patients will have at least one incidence of non-compliance. People are human. You may forget to take your medication, or miss a doctor's appointment. This doesn't mean you're going to automatically begin rejecting your organ, or suffer some other serious medical consequence. It is the patient who establishes a pattern of non-compliance that is most at risk for adverse effects. For the average patient, an incidence of non-compliance is simply a reminder to be more vigilant and involved, and to address any small problems before they become big ones.
Studies vary on the relationship of graft (transplanted organ) loss to non-compliance, but by any measure, the consequences are sobering. Some effects of non-compliance include:
A perfect illustration of the severe consequences of non-compliance is contained in the following statistic: Of consistently non-compliant renal transplant patients, 100 percent will lose their graft by the fifth year (3).
Many studies have been conducted on the reasons for non-compliance. The results suggest that there are many different triggers for episodes of non-compliance. Some of these reasons include:
It is evident that non-compliance has numerous factors, including psycho-social components. Some of these myriad factors which may eventually help predict non-compliance include:
The primary factor in increased compliance is implied in the statement above. The key is we. Compliance is a cooperative effort between an active and engaged patient, a communicative and responsive team of medical personnel, strong support from family and friends, and a free flow of dialogue between all. There are, of course, other concrete steps that are being studied or already implemented in the patient care arena in order to increase compliance. Some ideas include:
Again, compliance is a team effort. Taking immunosuppressants doesn't mean you can't live a normal, active and healthy life. There will be some rough spots along the way, but by staying involved, asking questions, and enlisting the help of your friends, family and transplant team, you can enjoy a long, happy, and healthy life.
Learn more about Improving Life after Liver Transplantation.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
Children’s Hospital of Pittsburgh of UPMC
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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