Developing a health measure

When I started out in research on Down syndrome, I wanted to see if patients were getting all the recommended health screens. I quickly found out that they were not, so I set out to find ways to improve completion of and adherence to health care guidelines. I remember thinking that making sure patients received the right healthcare was a key way to make sure their health was optimal.

A savvy reviewer for one of my manuscripts caught a line I wrote incorrectly equating preventative healthcare screening and health. The reviewer commented:

“Your interventions are improving adherence, but is that improving health?”

This got me thinking - what is health? What does it mean to be healthy? And, if I wasn’t improving it—yet—then how could I?

I learned that the first step to being able to improve health was being able to measure health. I researched a lot of different definitions of health and related health concepts, like health related quality of life, mental health and others. With the research team, we thought about disease (deficit) models and debated the concept of health. To be able to measure health, we considered the constructs and components that comprise it.

What do you think? What are signs that you are in good health? What makes a day a healthy day?

We then tested out these ideas through years of study. We created a survey that asked about everything we thought would measure health. Because this was a new measure (there wasn’t an existing one specific to Down syndrome), we compared our questions to the best measures available to see if our questions were getting at the concepts we hoped that they would.

From all of that work, and nearly a year of statistical analysis, we were able to pare down our survey to 25 questions about the 7 most important concepts of health.

It's been such a long journey to get to this point, but I'm excited to think about how I can now measure the health of my patients with Down syndrome—and hopefully take steps to improve health when possible. And I have lots of ideas for other research that could blossom from this work.

Thanks for reading!

And, make today a healthy day.