‘Compliance’ isn’t a four-letter word

If you have arthritis, you’re probably fast becoming an expert on medications. And you may have had a few thoughts about compliance — that is, taking your drugs exactly as prescribed. You may even be among that sizable contingent of people who believe, where medications are concerned, that “compliance” isn’t a word for polite company. The truth is, compliance has gotten a bad rap. It’s actually one of the good guys. It’s just been misunderstood — by a lot of people.

Innumerable studies have shown that people (as many as 75 per cent of patients in some studies) don’t follow their physicians’ prescribed therapy closely enough for the regimen to work. There are all kinds of reasons: Some people don’t like to take any drug, prescribed or not. Some are afraid; they see a list of side effects associated with their use, and they assume they’re going to develop each and every one of them; others feel slightly better and promptly quit taking any more pills.

Part of the problem can be traced to the too-brief time people have with their doctors; a patient has to be extremely well prepared to take full advantage of a 10-minute visit. Most people aren’t, and don’t. A good proportion opeople forget as much as half of what physicians tell them immediately after an appointment, including why, when and how they’re supposed to take a prescribed medication. The visit is simply too stressful and they may not have clearly understood what the doctor was telling them.

It’s even tougher for people with arthritis, who may only see their rheumatologist every six months. Many are so keyed up, especially on a first visit, or when they’ve just been diagnosed, that they not only forget what the doctor said but also what they wanted to ask about the medication prescribed. The result is a communication gap that may leave patients in the dark. And, let’s face it, it’s hard to stick to a strict regimen over a long period of time. “Maintenance is what we’re all poor at, isn’t it?” Dr. Arthur Bookman, a rheumatologist at The Toronto Hospital, asks rhetorically. “We’re not very good at maintaining a diet or exercise, and the same thing applies to drugs. Doing things regularly, properly, is hard for all of us, and I think it’s unrealistic to expect patients to take these drugs exactly as prescribed on a regular basis.”

However, Bookman believes patients do comply if time is spent dealing with areas where there might be a problem: “I find it very helpful when a drug is prescribed to take time and tell them what to expect, and leave the door open for them to contact me when there are side effects,” he says. “When I do that, I feel I’m getting very good compliance, at least initially.”

You may not be so lucky. You might not have a doctor who’s willing or able to take enough time to answer all your questions, so prepare ahead. Write down any questions you have beforehand, putting the most important queries at the top of the list. List exactly what your problem is, medications you’re taking, unusual symptoms, and so on. Take notes. If you don’t, you may well forget the answers or only remember part of the information. Two of the most important questions you should ask are: “Why do I need this medication?” and “What could happen if I don’t take it?”

Most anti-arthritis drugs, while they may have a pain-relieving component, are prescribed to control the disease. Most of us expect “painkillers” to erase our pain more or less instantly, preferably permanently. That’s not always a realistic assumption, and it’s even less pertinent to most arthritic illnesses. If you expect arthritis medications to do for your disease what ASA does for a headache, you’re in for a disappointment.

People can do themselves real harm through noncompliance, says Dr. Ian Chalmers, a rheumatologist from the University of Manitoba’s Health Sciences Centre in Winnipeg. “Especially if they’re on a regimen of anti-inflammatories or a more particular regimen of disease-suppressive agents,” he says. “If they allow the disease to break through by not sticking to their medication, they run the risk of increased joint damage and deformity over a longer period of time.”

Understandably, people become frustrated over the long haul of a chronic disease, and some may ditch a prescribed regimen for an unproven remedy, either for pain relief or in hopes of “a cure.” Chalmers doesn’t really blame them: “I imagine what I’d do in those circumstances, and I strongly suspect I’d be tempted to do the same thing.”

At the same time, though, he urges patients to at least carry on with what he’s prescribed, while he tries to “gently wean them away from the idea of seeking a complete cure.” He encourages patients to let him know if they’re experiencing pain that’s not controlled by their medications. If so, he can prescribe other drugs that are often very effective.

Marie Chambers, a pharmacist with The Arthritis Program at York County Hospital in Newmarket, Ont., tells her clients to talk to their doctors before deciding to stop taking a prescribed medication: “The medication can often be gradually reduced over time, but stopping it on your own is not an informed decision. The goal is to keep patients on the smallest long-term dosage that will control their disease.”

And don’t think that taking half a dose, or two-thirds, will cut your risk of adverse reaction. The nature of most arthritis medications is such that stopping short may completely wipe out the drug’s efficacy — without substantially reducing the risk of adverse reactions.

“The biggest danger,” says Toronto rheumatologist Dr. Arthur Bookman, “is when you list side effects but don’t weight them. The patient only hears “side effects”; not the frequency or chance of getting them. Even if it’s one in a million, they don’t want to touch the medication. It’s really hard to convey the concept that the drug has been tested; that it’s safe to use and the vast majority of people have no side effects whatsoever.” On the other hand, a physician can’t guarantee his patient won’t be one of those who experience side effects, so both patient and physician have to be vigilant. That way, side effects are caught early, before there’s any great risk, and the medication stopped or changed.

Explaining risk-to-benefit ratios to already-anxious patients can be an uphill climb, so Chambers turns the argument around: When people say they don’t want to take a medication because of the potential side effects, she asks them, “‘Have you thought about the side effects’ — I use the same words — ‘that the disease could cause? Once your bone and cartilage begin to be eaten away, there’s no going back’.”

Compliance isn’t blind obedience; proper compliance means knowing the difference between appropriate and inappropriate use. Inappropriate utilization might be someone who takes their medication for two days, and when it doesn’t work stops taking it. Equally inappropriate would be someone taking the medication for eight weeks, despite abdominal pain or diarrhea and no benefit.

If you’re experiencing side effects, talk to your physician. Find out if it’s a recognized side effect or something unusual. Then appropriate action can be implemented.

Be businesslike. Agreeing to take a medication is like signing a contract. Just as you wouldn’t break a contract with anyone else, you should go back to your doctor and re-negotiate if you want to make a change. Your doctor may agree you should stop taking a drug, but if you interrupt a course of medication on your own, months from your routine appointment — and then suffer a flare – – it’s going to be very difficult for the doctor to assess the efficacy of the medication.

So, ask questions, learn as much as you can about your disease and your medications. And remember: When we’re educated about our medications, we’re more likely to take them as prescribed. Studies have shown that taking medication as prescribed — yes, being compliant — results in less pain, more mobility and a more active life. It’s your decision.