Intestinal Transplant Compliance: The Key is We!

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.

What Is Noncompliance?

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 an intestine 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 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:

• Missing a dosage
• Altering the dosage (taking too much or too little)
• Ending your medical regimen early
• Self-medicating with other drugs (this could be something as simple as aspirin, depending on your condition and the other drugs you take)
• Missing healthcare appointments
• Skipping or shortening prescribed treatments
• Not following dietary requirements
• Having an alcohol or drug abuse relapse
• Starting or resuming smoking

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.

What Are the Consequences of Noncompliance?

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:

• Increase in acute rejection episodes
• Increased graft loss, leading to retransplantation, renewed dialysis, etc.
• Increased susceptibility to graft and non-graft related illnesses
• Increased frequency of hospital admissions
• Increased mortality

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).

Why Are Patients Non-compliant?

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:

• Simple forgetfulness
• A belief that immunosuppressants are not necessary, especially when one is feeling healthy
• Mistaken belief that a living donor match requires less (or no) immunosuppression
• A belief that immunosuppressants stay in your "system" longer than 24 hours
• Anger or frustration at being forced to maintain an exceedingly complex medical regimen
• Poor understanding of their doctor's and pharmacist's instructions
• An effort to lessen side effects of medication
• Depression
• A struggle for independence, especially in the adolescent patient
• Running out of medication

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:

• Socioeconomic status
• The availability of familial and other social support structures
• Education, or the ability to comprehend complex instructions
• Clinical depression and a lack of motivation
• Emotional stressors of adolescence
• Poor self-image due to illnessCultural traditions and beliefs
• Religious beliefs

How Can We Increase Compliance in Intestinal Transplant Patients?

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:

• Simplify medical routines. Pill boxes, medical planners, pagers, alarms, PDAs (Palm Pilots) are all ways to help you remember to take your medications. Using one or a variety of these tools will help you put together an adherence regimen that works.
• Talk with your intestine transplant coordinator and doctor about ways to minimize side effects. If you don't speak up about what you are experiencing, your transplant team can't help you. With dietary, dosage, or frequency modifications, it may be possible to reduce the unpleasant aspects of immunosuppressants.
• Talk with your family and friends about what you are experiencing. Enlist their help in keeping you "on the straight and narrow." Remember, your family and friends may feel as helpless as you, and are just waiting for the opportunity to help out in some way.
• Educate yourself. Read everything you can about your illness, and ask questions of your transplant team. As the old saying goes, the only stupid question is the one you didn't ask.
• Join a support group. There are others out there who have struggled with the same issues you are facing, and they may be able to share with you creative solutions. Click the following link to read an interview with one of our patients.
• He shares his experiences, and explains how he deals with day-to-day activities.

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 Intestinal Transplantation.

1. Bame S, Petersen N, Wray N: Variation in hemodialysis patient compliance according to demographic characteristics. Soc Sci Med 37:1035÷1043, 1993.
2. Kraus, Michael Rupert, et al: Compliance with Therapy in Patients with Chronic Hepatitis C: Associations with Psychiatric Symptoms, Interpersonal Problems, and Mode of Acquisition [Liver]. Digestive Diseases and Sciences Volume 46(10) October 2001.