Data collection critical to understanding and treating eating disorders
By Steven Crawford
Dec 28, 2017 | 6:00 AM
Compared to many illnesses, eating disorders are extremely underfunded which reflects not only a misunderstanding about just how many people are impacted but also just how dangerous these illnesses can be.
More than 30 million Americans experience an eating disorder in their lifetime. That’s nearly one in 10. Yet, depending on the diagnosis, as few as 6 percent will receive treatment. Those statistics are even more harrowing when you consider that eating disorders have the highest mortality rate of any mental illness. They intersect in complex ways with increased risks for suicide, substance abuse, depression, obesity and a long list of potential short and long-term medical complications.
What can be done about it? Awareness is the first step to change, but planning large-scale countermeasures requires real data on the extent of the problem. How do people from varied backgrounds and lifestyles experience eating disorders? What do they have in common? Where do they live — how many, for example, are in Baltimore and other parts of our state? Right now, we just don’t know. And that must change.
That’s why a coalition led by Harvard’s Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) is asking the Centers for Disease Control (CDC) to monitor eating disorders as a part of national disease surveillance efforts. Specifically, by adding eating disorder questions to three pre-existing surveys, administered in schools and communities nationwide: the Youth Risk Behavior Surveillance System (YRBSS), the National Health and Nutrition Examination Survey, and the National Health Interview Survey.
By including eating disorder questions in our national health monitoring, we can get a more current, accurate picture of how eating disorders may be impacting underserved communities such as people of color or communities affected by poverty and food insecurity. There’s the potential to capture the reach of eating disorders in overlooked patient groups such as male youth, men of color, military personnel, veterans and even athletes.
We know from initial research that the impact of eating disorders extends beyond the stereotype of the young, white, emaciated female. We see this easily in our outpatient clinic and in our hospital-based programs at The Center for Eating Disorders at Sheppard Pratt in Towson. Patients come from across the mid Atlantic (and beyond) and reflect a variety of ages, weights, genders, sexual orientations, socioeconomic status and religions.
The last data we have regarding eating disorders in Maryland youth is from 2011 when the YRBSS found that over 20 percent of high school girls and nearly 10 percent of high school boys in our state were going 24 hours or more without eating to lose weight. This represented a significant increase over past years. Another significant increase showed up in the number of youth who reported vomiting or taking laxatives in an effort to drop pounds. These are not benign actions. Yet, we have no explanation for why these questions were dropped from all future YRBSS surveys despite knowing such trends were on the rise in local schools.
Also reported in the 2011 data was that 30 percent of Maryland high school students had been teased about their weight or size. Why is this significant? Weight-based bullying represents a major risk factor for the development of eating disorders.
In 2014 we learned that 42 percent and 44 percent of middle school students in Baltimore City and Baltimore County respectively, were trying to lose weight. However, because the survey no longer asks questions about methods, we have no way to know just how many are engaging in risky or harmful behaviors in pursuit of this goal.
Without monitoring systems in place, it’s extremely difficult to move past persistent stereotypes to allocate services to the communities and individuals who most need it. Consequently, eating disorder researchers and public health experts across the nation are often left with outdated and piecemeal data to shape public health programs. Gathering updated and accurate information about eating disorder symptoms annually will help target outreach and education efforts. This information will aid immensely in efforts to intervene early in the course of the illness, saving time, money and suffering.
Compared to many illnesses, eating disorders are extremely underfunded, which reflects not only a misunderstanding about just how many people are impacted but also just how dangerous these illnesses can be. In the past, The National Institute of Health allocated only $1.20 in research funding per affected eating disorder patient, compared to $159 per affected individual with schizophrenia. Without funding, it’s difficult to collect data to help inform treatment, prevention and education. Without data, it’s difficult to justify funding. People with eating disorders in Maryland — and around the nation — deserve better. Adding questions about eating disorders in the CDC’s national health surveillance surveys would be a great start towards healthier communities.