Moving Beyond Weight in Pediatric Obesity Research and Care

For the last two days, we have been both observing and participating in an NIH meeting on pharmacotherapy for obesity in children and youth that has been quite a pleasant surprise. Scientists, clinicians, parents, and young persons came together in a stimulating exchange of ideas. Perhaps the most notable dialogue focused on a desire to move beyond an excessive focus on weight in pediatric obesity research and care.

In a panel discussion on the second day of the meeting, OAC board member and patient advocate Liz Paul told researchers and clinicians why this is so important:

“For you, this is your work. For me, this is my whole life. I move through life wearing a billboard because of obesity that leads people to make assumptions about me and my health. It can be overwhelming.”

ConscienHealth’s Ted Kyle moderated a panel discussion of parents and youth on the second day, from which three major ideas surfaced.

1. The Whole Person

“This is a constant weight on my whole life,” said one of the youth participating in this panel. Echoing Liz Paul, every panel member described in very personal terms how this disease affects just about every aspect of life for young persons and their parents.

All too often, the focus of pediatric obesity research and care is too narrow, with body weight as a dominant outcome measure.

2. Outcomes Beyond Weight

Obesity clinicians and scientists know it is far more than body weight that defines this disease. Yet the focus on body weight as a primary measure of clinical outcomes persists. From this patient panel, it became clear that there is a need to look more broadly. To find ways to bring patient reported outcome measures into view.

3. Better Science

With any chronic disease, the science is always complex and incomplete. But as one parent pointed out, “If my child has diabetes, their doctor can explain it in medical terms that make sense. But the explanations I receive about obesity are simply not clear or grounded in medical science.”

We can do better on this.

Prioritizing the Lived Experience of Obesity

We are grateful to Voula Osganian, who organized this meeting for NIH, because she worked with meeting co-chairs to bring parents and youth into the agenda. Those co-chairs were Sarah Armstrong, Ihuoma Eneli, and Aaron Kelly. After the meeting, Kelly told us he viewed the meeting as a resounding success:

“We identified the most critical questions that need to be answered in future research studies. The highlight, though, was hearing from families with the lived experience of obesity. You could have heard a pin drop in the room every time they spoke. As scientists, we need to proactively seek their advice to help guide the direction of our work. At the end of the day, we want to prioritize the kind of research that is most meaningful to people living with obesity.”

Click here to view the agenda of this meeting. For further perspective on lived experiences with obesity, click here, here, and here. For insight on lived experiences of children and youth with chronic diseases, including obesity, click here.

A Walk in the Woods, Madame Lecoeur and Her Children, painting by Pierre-Auguste Renoir / WikiArt

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November 30, 2023