Why participate in research


To put it simply, research makes the treatment world go round. Effective treatments based on credible information need to come from the results of research and research needs participants. This article will explain why research is so important for the BFRB community.

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To improve understanding about BFRBs

Before treatments can be developed, first we must understand that which needs treatment. When considering the history of BFRBs or any other mental illness, there is a long trajectory of misunderstanding. For example, BFRBs were once considered a “bad habit” and treatment sought to teach people strategies to counter the habit. Then, the research groups that developed the DSM-5 that was released in 2013 found enough evidence to group BFRBs within the obsessive-compulsive spectrum of disorders. In the past five years, however, new research indicates that BFRBs have traits like tic disorders which makes a difference for treatment. Ultimately, every bit of research leads to more information that helps us understand disorders so that people who suffer from them can get help.

New assessment tools come from research that provides more information about the disorder. If research shows anything over the past several decades, it is that people who have BFRBs manifest symptoms in different ways. Consider the difference between focused and automatic behaviors. Focused behaviors are those where someone pulls hair for a purpose including emotional release, stress relief, or physical stimulation. Treatment for those behaviors involves addressing triggers and introducing a healthier response to it. On the other hand, there are people who pull automatically, without conscious awareness. The treatment method used for focused behaviors would not work for automatic pulling because without awareness of the triggers, it is extremely difficult to create interventions that target them. Therefore, treatment for automatic pulling starts with learning self-awareness. Several decades ago, this distinction between behaviors was not known and treatment methods were not nearly as effective as they are now. Now, BFRB assessment includes determining whether someone engages in automatic or focused behaviors which would not have been developed if not for research.

To develop effective interventions

With understanding comes treatment interventions that target the right thing. As treatment interventions are developed, they also go through a rigorous research process to determine whether they are effective in treating what they are supposed to treat. Take habit reversal training, for example. It took several incarnations before it developed into the components used today. Throughout its development, the components were tested in randomized controlled trials, which are the gold standard for determining clinical significance. In these studies, participants are placed either in a habit reversal training treatment group or a control treatment group, but the participant does not know which one they are in to prevent bias. Then, after the interventions are completed, researchers measure whether participants experienced improvement. Finally, the data analysis will determine whether the intervention produced statistically significant results. The interesting thing is that even if some people demonstrate improvement, it may not reach the threshold of statistically significant improvement.

The beauty of research is that a community of researchers critique results for accuracy, reliability, and validity. The more rigorous the review, the better the research becomes. Regardless of the study design, every research study has limitations, and one of the most cited limitations for BFRB research is small sample size. BFRBs are not that prevalent in the general population. High estimates indicate that only 4% of people struggle with these disorders. Then, there is the challenge that those who have them do not advertise that they have them due to the stigma involved. Finally, not many people know about research, where it occurs, or how to participate. The problem with small sample size is that the sample is not considered a representative sample of the BFRB population. In other words, just because it works on a small group of people does not mean it will work in others.

Additionally, if there is no distinction between types of BFRBs or types of behaviors, the research may or may not be appropriate for others. For example, a study on habit reversal training for BFRBs, in general, may use a sample of people with trich, excoriation disorder, and nail-biting with only a handful of people with trich. Even if the study indicates statistically significant improvement for the whole sample, which participants showed the improvement? It may be that the people with trich did not show as much improvement as those with nail-biting, which is a significant difference.

To develop pharmacological interventions.

Finally, research helps in the development of pharmacological interventions. Medicines only work if the mechanism for the disorder is one that can be chemically altered. While some medications seem to help people with trich, there are none specifically indicated for the treatment of hair pulling disorder. Recent research has started to look at the brain mechanisms that contribute to trich, but further research is needed before chemical alteration is considered.



How do I participate?

Good research is in process in several locations throughout the country. For example, at the University of Chicago, Dr. Jon Grant runs the Addictive, Compulsive, and Impulsive Disorders Research Lab where they are using brain imaging studies for people with BFRBs. The University of Wisconsin Milwaukee’s Anxiety Disorders Lab run by Dr. Han Joo Lee is conducting multiple studies on trich that are actively looking for participants. Finally, the TLC Foundation coordinates media awareness efforts for researchers looking for participants with a list of studies taking place in Los Angeles, Australia, Boston, Ann Arbor, MI, Kent, OH, Philadelphia, and Washington, D.C.      

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