Body-Focused Repetitive Behavior: What You Need to Know
Crowdfunded initiative aims to shed light on body-focused repetitive behaviors.
Posted Aug 16, 2018
Body-focused repetitive behaviors, or BFRBs, are a group of related disorders that cause people to compulsively and repeatedly damage their body — commonly by pulling out their hair (trichotillomania), picking at their skin (dermatillomania), or biting their nails (onychophagia). Despite their prevalence — such conditions are thought to affect more than 10 million people in North America alone — our understanding of why BFRBs develop and how they can best be treated has remained stagnant for years, experts say.
That may soon change, as the largest precision medicine study ever conducted on people with BFRBs is in the final stages of data collection, reports the study’s director, Tara Peris. The BFRB Precision Medicine Initiative is the first effort of its kind to investigate a set of “complex and poorly understood” behaviors, Peris says.
BFRBs can result in bald patches, scars, or infections, and frequently comes with debilitating shame, anxiety, and social isolation. The TLC Foundation for Body-Focused Repetitive Behaviors, a nonprofit focused on BFRBs, estimates that 2 to 4 percent of the population has trichotillomania, and 2 to 5 percent has dermatillomania; the two BFRBs frequently occur together. Nail-biting, the most common BFRB, is estimated to affect between 20 and 30 percent of the population (particularly children), with widely varying degrees of severity and related distress. Treatment options exist, but they leave much to be desired, says TLC’s Executive Director, Jennifer Raikes.
“We don’t have treatments right now that are effective for most people,” she says. “Relapse is more common than not.” Current treatment strategies, which include Habit Reversal Therapy and SSRIs, have about a 10 to 20 percent long-term success rate, she says, and many general therapists are unfamiliar with best practices for diagnosing and treating BFRBs. Without treatment — or a clear understanding of why they feel compelled to pull out their hair or pick their skin — living with a BFRB can be emotionally painful for those who deal with it. Raikes says, “There’s a lot of secrecy and shame that can really warp people’s lives.”
Some studies have led to apparent treatment breakthroughs — like a 2009 study finding that N-acetylcysteine, a drug commonly used to treat acetaminophen overdose, resulted in significant improvement for 56 percent of patients with trichotillomania. But the vast majority of studies on BFRBs have had fewer than 30 subjects, Raikes says, and research has been “hamstrung” by a lack of interest or funding. “People who had been researchers [on BFRBs] have been turning away,” she says. “We need to move this field forward.”
In 2014, TLC announced fundraising efforts for a large, multi-site study to unearth the biological and genetic roots of BFRBs. After raising more than $2.8 million — mostly from small individual donations, Raikes says — the Initiative launched in 2017, directed by Peris, an associate professor of psychiatry and biobehavioral science at University of California, Los Angeles.
The study includes 300 participants — subjects with BFRBs and healthy controls — who, by the study’s completion, will have undergone clinical interviews, blood work, fMRIs, and a series of computerized tasks designed to assess their reward sensitivity, response inhibition, and other traits thought to be linked to BFRBs. The study is being conducted at three sites in the U.S. — L.A., Boston, and Chicago — and is being run by lead investigators John Piacentini of UCLA, Nancy Keuthen of Mass General Hospital, and Jon Grant of the University of Chicago, respectively. A separate team in South Africa is collecting data in tandem that will eventually be examined alongside the U.S. data, Peris says.
The researchers will start analyzing the data in the coming months, and results should be published by mid-2019, according to Peris.
"The goal is to examine these behaviors at multiple levels of analysis so that we can understand what drives them — and use that information to guide new treatment development,” she says.
Ideally, she says, the Initiative will be able to identify brain activity patterns and genetic markers for different subtypes of BFRBs — people who pick at their skin when they’re anxious, for instance, versus those who pull their hair when they’re bored or distracted.
“BFRBs are heterogeneous, and there won’t be a one-size-fits-all treatment that works for everyone," she says. "We expect that data from this project will help us to identify meaningful subtypes that, in the future, will help us to match people to treatments most likely to work for them."
When it comes to treatment, “There’s a lot of room for opportunity," she says. "We can do a lot better than we’re doing, that’s for sure.”