Many of my blogs are inspired by comments I read on lupus sites. This blog is one of those. As is usually the case, I copied this post from my own website:
Lupus Patient Compliance
Figuring out why treatment works with one lupus patient and not another is a critical challenge for researchers. Different manifestations of lupus vary in their response to treatment protocols; ethnic background also seems to influence outcome. Obviously, in every case the goal is to get maximum benefit out of treatment. Of the many factors that come into play in a clinical setting, one that has received some attention is patient compliance--that is, the consistency with which a patient follows a prescribed treatment regimen.
This would seem to be a no-brainer: if you don't take your medicine you can't get well. However, understanding the role of patient compliance in treatment success is not that clear cut. The ability or willingness to follow through on a treatment plan can be affected by education or culture, and it's not easy to sort out these aspects of patient profile. It would be extremely helpful for researchers to understand whether ethnic background, cultural setting, poor patient compliance or another element significantly contributes to more successful outcomes. Often, all of the factors are so intertwined that even the most well-designed studies have trouble separating them.
Despite this blending of influences, one thing does come through in the studies: patient behavior can affect treatment outcome. This is really important for us to know. Though patients are not responsible for being ill and generally cannot by themselves change the course of their disease (and sometimes, even with help, cannot do this), they can participate in treatment so that a successful outcome is more likely.
A few years ago, when I wrote my first book about lupus, I described my love/hate relationship with prednisone. Before this treatment option was offered I suffered without relief through frequent flares and worsening symptoms. And yet--when the appropriate medication was finally prescribed, I resisted. I resisted because I had read so much about the dangers of prednisone. And I resisted for reasons I did not completely understand.
We all come to illness with a set of personality traits. In my case, because of a rather challenging childhood, I was (am) stubborn. I never accepted other people's estimation of my prospects for a good future, because those prospects seemed so poor. Ignoring every realistic appraisal of my chance for success, I pressed on.
All that obstinacy worked. While I didn't blaze pioneer trails, I did make a life for myself, a relatively contented one.
So when lupus intruded, I saw it as just another challenge, to be confronted in my usual style. But in insisting upon going my own way, I wasn't fighting lupus; I was working against myself.
I think, for a lot of people, the resistance to medication partly reflects a desire to maintain control. But this can be a misguided and counterproductive impulse. The best control we can hope to exert over our disease will probably come from learning about it and participating with our doctors in forming a treatment plan. Medication is a tool we use to help ourselves; it is not something that is done to us--it is something we choose to do in order to fight the real enemy: lupus.
Research on patient compliance in lupus has not yielded consistent conclusions, though some studies do outline the role of patient compliance in outcome. One article, "Treatment adherence and clinical outcome in systemic lupus erythematosus", in the journal "Rheumatology", suggests that not only does patient compliance increase the chance of treatment success, but compliance is more likely to occur when doctors and patients collaborate.
References to numerous studies is contained in the "Rheumatology" article. One that is discussed, "Morbidity of systemic lupus erythematosus: role of race and socio-economic status" from the "American Journal of Medicine", 1991, finds a definite correlation between poor adherence to treatment plan and severe renal disease.
While we as patients should understand that compliance with a treatment plan is probably in our best interest, doctors also must understand their role in promoting our willingness to comply. In a National Institutes of Health publication, "Lupus Erythematosus, A to Z" , the authors state: "People with lupus should work with their doctors to develop their medication treatment plan. Patients should thoroughly understand the reason for taking a drug, its action, dose, administration times, and common side effects." Another article, in the journal "Rheumatology", cites research which found that lupus patients "...who participated more actively" in their treatment plans "...accrued less organ damage over a median follow-up period of 4.7 years".
With lupus--or any chronic, incurable disease--so much is determined by factors outside of our reach. The one thing we may have some control over is ourselves (although, when lupus is raging, cognitive compromise may interfere even with this). I think it's clear that we cannot afford to be casual about compliance with treatment. We, as partners in our own care, should cooperate in developing a treatment plan, and once we are on board, give it everything we've got.