Edward Smith, MD, a neurologist, explains why setting clear expectations around treatment benefits and risks can help patients and families stay engaged with care plans over time.
Transcript
Probably the best way to avoid noncompliance is to explain upfront what the expectation is.
If I prescribe steroids for instance, going back to Duchenne in this patient, they need to know I don’t expect — we don’t expect — this drug to keep you from getting weaker. We expect it to keep you from getting weaker as quickly as you would have otherwise.
But how do you prove that in that one patient, five years later? They’re weaker. You can only make the case for that with large numbers of patients over a long period of time and so sharing the data that are available: “Here’s why I recommend these steroids,” going back to that example. “Yes, there are a lot of bad side effects, but here’s the efficacy data that we’ve seen, you know, over 30 years of treating Duchenne muscular dystrophy with steroids.”
It’s a very tricky thing. And these are discussions that need to recur. You know, families and patients hopefully feel comfortable, or should feel comfortable talking honestly with their physician, their care team about their concerns and whether or not they should really continue that treatment recommendation if it’s causing too much disruption, or bad side effects.
Everything is a risk-benefit calculation. When that treatment effect is relatively low, like we were discussing, slowing progression as opposed to, you start taking this drug and for instance your weakness will not progress anymore.
You may not get much stronger, but you’re not going to get weaker. Versus start this treatment, and you’re going to begin to get stronger over time and maintain that.
As that efficacy or benefit increases, so does the risk tolerance. And so does the compliance or the desire to remain compliant.