By David L. Rosenbloom
Patient compliance with medically prescribed drug regimens is, and always has been, a major factor in how effective physicians are in treating disease. Compliance has been monitored as far back as the time of Hippocrates. When the effect and dosages of various potions were recorded, so were notations of when and if the patients had taken them or not. Yet over two millennium of recorded medical history, compliance has continued to be low.
What the studies and anecdotal evidence show
According to a 2003 report from the World Health Organization, “Adherence to long-term therapy for chronic illness in developed countries averages 50%. In developing countries, the rates are even lower.”
A 2005 report in the New England Journal of Medicine (NEJM) Adherence to Medication states that physicians have difficulty recognizing patient non-compliance and when they take measures to improve patient behavior, the results have been mixed. “Simple dosing (one pill, once daily) helps to maximize adherence, particularly when combined with frequent reinforcing visits, despite the fact that 10 - 40% of patients taking these simple regimens continue to have imperfect dosing.
The same NEJM article points out that only about 1/3 of patients come close to perfect adherence. Even in controlled clinical drug trials, average adherence rates of 43-78% are reported. Poor adherence accounts for worsening of disease, death and increased healthcare costs. “Of all the medication-related hospital admissions in the United States, 33-69% are due to poor medication adherence, with a resultant cost of approximately $100 billion a year.”
Why are these compliance numbers so low, even in today’s environment of highly effective drugs with proven success records? Patient attitude is to blame. Most patients are passive when it comes to their own healthcare treatment. They generally want to please their doctors, who are normally viewed as experts and authority figures. So they tell the doctors what they believe their doctors want to hear, i.e. “Yes. I’ve taken my medicines as directed.”
When patients are questioned about why they aren’t compliant, the NEJM article lists the following excuses: “forgetfulness (30%), other priorities (16%), decision to omit doses (11%), lack of information (9%), and emotional factors (7%); 27% of the respondents did not provide a reason…”
What’s the answer?
I think is has largely to do with a failure to include the patient in the treatment process. I know this from 8+ years of my own dealing with kidney disease. The more I’m involved, the better my doctors educate me, the healthier I am. This is not pie-in-the-sky philosophy. Anecdotal evidence other than mine shows this to be correct. Patient passivity leads to non-compliance, non-adherence, or what many of us on the patient side prefer to call non-accommodation.
In the kidney dialysis world, we call it “learned helplessness.” If you are unfortunate to have kidney failure, in most cases, your doctor or nephrologist will automatically place you in a clinic where you will receive inadequate treatment – three, 3-4 hour treatments of dialysis a week. Your only responsibility is to show up, take your meds and follow an impossibly restrictive diet. The medical staff will do the rest per the doctor’s instructions. Unfortunately, many people who are placed on this in-clinic regimen, will not improve nor survive very long.
Perception and education
Those of us who have taken back control of our disease treatment, have escaped from this outmoded dialysis regimen and switched to more frequent modalities, most of which we do at home in familiar surroundings with the aid of loved ones as caregivers. Many of us have done it alone. The technology is available. The problem is that most kidney patients are not educated about the choices available to them.
Both articles I have quoted above note this phenomenon. The WHO reports states that “practitioners must have access to specific training in adherence management, and the systems in which they work must design and support delivery systems that respect this objective. … For the effective provision of care for chronic conditions, it is necessary that the patient, the family and the community who supports him or her all play an active role.”
So where do we start to correct this imbalance. I think it’s with the perception of the roles that patient and healthcare professional play in the treatment. We can start by eliminating the medical terms “compliance” and “adherence.”
“Both terms are imperfect and uninformative,“ states the NEJM article. I wholeheartedly agree. Compliance and adherence are so one-sided, i.e. “you will do as I wish - no questions, no contradictions. Just be a good, little patient and do as Doctor says.” This leads to patients being passive, uninformed and intimidated. It places the entire blame for not understanding or not following orders on the patient, who is most likely lost in a maze of high technology and arcane medical terminology.
Accommodation on the other hand implies an action I do willingly, on my own initiative. I've always felt that with kidney failure, our brain has to take over the management functions our kidneys did naturally. I realize this is a very intellectual view of a life and death matter, but it is what must happen if you want to survive and regain control of your life. You must “think” about things that your kidneys no longer do, like regulating and eliminating excess fluids, taking supplements to replace natural hormones produced in working kidneys, and avoiding certain “bad” foods which will significantly worsen your health. You must learn what dialysis can and cannot do for you, and then begin to accommodate your lifestyle to those needs.
It’s not rocket science, it’s common sense that’s been honed by education. And this is where the physician and the medical staff must play a larger role. The kidney patient, or for that matter any patient with a chronic condition, must be told the basic facts up front, at the very beginning of treatment. If the patient is incapable or too ill to understand, then the spouse, family or caregiver must become the patient’s surrogate. And at each important juncture in the process of treatment – from diagnosis to dialysis and hopefully transplant, the patient and the caregiver must be a critical part of the team. They must understanding the procedures used, the drugs proscribed, and results of tests. It will take more time and more effort than we have been willing to employ. But it will result in better outcomes, a goal we all seek.