How much disease education is too much?

By Dr Irwin Lim, Rheumatologist

Our clinic's been developing more and more resources for patient education.

A person given a serious diagnosis of a chronic, life-changing disease such as rheumatoid arthritis (RA) or ankylosing spondylitis (AS) needs to be supported.

We believe that treatment decisions, especially difficult ones, become a little easier to make and agree on, if the persons involved have understanding and insight into their diseases.

So, front up, from the point of diagnosis, information needs to flow.

But, is too much information a problem?

There's so much to consider.

Different people want different amounts. People process info differently. Some like to read, some don't. Some prefer video or audio. Some just want to be told.

While it's easy to assume healthcare providers can just tailor what education they provide to the individuals, it's not so easy in a real life setting.

We have protocols and pathways that we tend to default to. To be efficient. To not forget stuff we would like to get done.

I thought I'd share what I would do for a typical new RA diagnosis.

In the consultation room, my patient will receive a folder containing a variety of printed sheets about the disease and possible treatments. It includes a simple workflow diagram showing the treatment path we will likely follow. A plan of attack, so to speak.

After they've left my room, my patient will get an introductory email from our rheumatology care coordinator, Flora, with appropriate weblinks:

The patient is also booked in for a face-to-face session with Flora to run through key concepts and to help the person navigate the health maze.

And of course, there is phone access, email contact and follow up appointments.

My worry is that we're providing too much in too short a time. Does too much lead to turn off?

There must be ways to improve this information dissemination, such as closer links to patient support groups. In a reasonably cost/time effective way.

I'd love to hear your ideas.