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Helping Patients Understand the Big Picture

Monday, January 27, 2014
Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions When it comes to the big picture of a health condition and how it may affect people’s bodies and lives over time, it’s easy to take what we understand for granted and assume patients and families know, too.

I was recently struck by this while working on a decision aid for End Stage Renal Disease. When we tell people who are newly diagnosed or living with diabetes that over time it can cause kidney problems, do they really understand they may be on a trajectory toward renal disease, dialysis and kidney failure? Or do we simply say it can cause “serious problems” and take for granted they know what lies ahead? I think it takes a lot of people by surprise – and it’s not a nice one. In fact, we often begin our interviews of patients who are starting treatments like dialysis with what they wish they’d known.

A local nephrologist told me that as many as 30% of their first-time appointments never show up, because people with diabetes have no idea why they’ve been referred. We heard this from patients themselves in our Crohn’s Disease focus groups. We were concerned all the information about ulcers and anal fistulas was too scary and overwhelming. But what we heard is: this is the real information I wish I’d understood when I was first diagnosed.

Now, I’m not talking about “scaring people into being good patients,” or getting into all of this when someone is first diagnosed. Overwhelming people is not helpful. But making sure they understand enough about their condition and how it may progress can feed into why they’re being asked to do so much day-to day care. And it can help their family engage in their care, too.  

Tags: patient engagement, communication, health literacy
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