I was at a conference earlier this week, and like most of the conferences I attend, patient-centricity was a primary focus. Unlike my last conference, I was one of few patient representatives. Both speakers and attendees were decisionmakers in government, research, and advocacy. I was pleased by a focus on increasing patient engagement to improve everybody’s data.
During one of the panels, the discussion turned toward adherence -- what they used to refer to as compliance in the good old days. Or rather, non-adherence. Adherence, the new word used in the healthcare industry as a nod to sensitivity – apparently ‘compliance’ connotes too much blame – is a complicated and nuanced challenge. There are lots of reasons a person might not follow a treatment.
Initially, barriers to care and access were the concerns. The patient literally can’t get what they need to follow the prescribed treatment regimen. It’s too expensive. Logistics are too complicated (transportation to appointments or delivery options.) The treatment interferes too much with their job, family, lives. There are language barriers.
All of these are concrete issues that can be measured and studied.
But there is another facet to the adherence picture, a mental health facet. I have non-adhered twice in my life – once a grand and damaging fit of rebellion, and one a more subtle push of denial. I have talked about the former often. It’s a Gordian knot of rage, fear, guilt, helplessness, hopelessness, distrust, body dysmorphia, lack of access to the right clinicians, and other things you can imagine.
The latter was more subtle. My endocrinologist prescribed blood pressure medication for three years before I was diagnosed with chronic kidney disease. I didn’t take it. Who knows if it would have made a difference, but it might have. I haven’t examined the whys behind this one as deeply as I have with the other one, but I wonder sometimes if it was an attempt to experience the invincible stage everybody gets to go through, but I never got to. I think I fooled myself into thinking that if I ignored it, it would just go away. With every medical thing that had gone before, I knew better, but I crossed my fingers and hoped anyway.
Neither of my experiences with non-adherence can be easily measured or addressed. Issues like these require therapy, and one aspect of my own privilege is that I have always had access to mental health professionals. Some have been better for me than others, but I could always afford (with difficulty at times) and physically access the treatment I needed. Not only that, but as an adult, I lucked into professionals who had experience treating patients with diabetes, a significant source of my need for mental health treatment.
I’m going to hazard a guess that most people like me, who have no official diagnosis except that they struggle with balance, stress, non-clinical depression, and anxiety caused by a chronic condition, or caused by life in general and which exacerbate a chronic condition, do not have easy access to mental health professionals, let alone those with experience in the issues that come with their conditions.
Even if they do, successful treatment for mental health roadblocks* to adherence to chronic and autoimmune condition regimens is not guaranteed. Issues are almost impossible to measure. It’s hard to collect self-reported data that patients might be ashamed of, or that they might not be aware of. (How many of us are not aware of what troubles us until we are actually getting treatment?)
That doesn’t mean it should be excluded or discounted. And it’s going to be hard. Conditions a patient is unaware of or can’t articulate will require flexibility and assumptions that tread but don’t cross the line into paternalism.
What was it that FDR said? “Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty . . . “
We have our work cut out for us.