A Preliminary Analysis of the Phenomenology of Skin-Picking in Youth with PWS

Below is a special guest blog from Jessica Morgan, a graduate student working with Dr. Eric Storch at the University of South Florida.  Their group has an interest in understanding skin picking (and other obsessive/compulsive behaviors) in PWS so that they can help develop more effective ways to decrease the behavior.  Many thanks to Jessica for summarizing their study:

Many research studies in the past have shown that skin-picking can be a common habit in youth with PWS, but few studies have looked at the nature of this habit and the impact it can have, as well as the other problems that correlate with severity of skin-picking.  A survey of skin-picking and associated factors in youth with PWS was conducted by a research team at the University of South Florida, headed up by Jessica Morgan and Dr. Eric Storch, and was partially funded by a grant from the Foundation for Prader Willi Research.  The results have just been published in the journal Child Psychiatry and Human Development [Morgan et al, 2010].

We received many replies; 67 parents of youth age 5-19 with PWS completed the survey and were used in data analysis. We found that 95.5% of parents who participated in the survey said that their child picked his/her skin, and about 42% picked their skin to a degree that it would be considered a clinical problem, according to the Skin Picking Scale which was included as part of the survey. Many different locations were targeted, most commonly the hands, legs, and face. Although scabs, itchy skin, and insect bites were frequent targets of skin-picking, approximately 60% of participants said that their child picked at healthy skin as well. Parents most commonly reported that their child used the fingernails or fingers to pick the skin.

More than half of the sample said their child commonly picked skin at school, while waiting, while watching television, while riding in the car, and while lying in bed. Because these are times when children might be bored, skin-picking may commonly serve as a way to self-stimulate or relieve feelings of boredom for some youth. However, the reason why children pick their skin will likely be different for each child.

Regarding the consequences/impact of skin-picking in youth with PWS, parents often said their child suffered infections and scarring due to skin-picking. In 10–15% of cases, youth suffered with deep craters or disfigurement due to skin-picking. In several instances, hospital visits were necessary given infection or overall impairment. This shows that kids with PWS can be significantly impacted because of their skin-picking.

Youth who picked their skin to a degree that it would be considered a clinical problem also were more anxious, more impulsive, and had more problems in health-related quality of life. Also, they were more likely to pick their skin in a “focused” way; that is, they usually were aware of their skin-picking while it was happening, but they still experienced strong urges to pick their skin.

It is critical that clinicians recognize the prevalence of skin-picking and its associated impairment when treating individuals with PWS. If reduced anxiety is related to reductions in skin-picking, cognitive- behavioral therapy (CBT), an approach with proven success in childhood anxiety and OCD, may be helpful for youth with PWS pending developmental alterations in treatment delivery. Of note, the research group that conducted this study is also conducting another study, funded by the Foundation for Prader Willi Research, that is examining a modified CBT protocol to treat compulsive behaviors in youth with PWS. Preliminary results of this study have indicated that Habit Reversal Training (HRT) and exposure components paired with rewards for good behavior work well to treat skin-picking and obsessive–compulsive symptoms in youth with PWS. HRT is a treatment that involves increasing the child’s awareness of their own behavior, and replacing the habit that you don’t want with a “competing response,” or a habit that doesn’t cause problems, like squeezing a Koosh Ball for example. It’s important to understand why the child is picking his/her skin (the function that behavior serves), though, to make sure the treatment addresses the function of that behavior. Currently, there is no demonstrated effective treatment for treating skin-picking in PWS. Given its promise among typically developing individuals, investigating HRT that is adapted for youth with PWS holds potential merit. Given our results, treatment approaches that incorporate rewards for good behavior, as well as a “competing response” that is satisfying enough to relieve the urges to pick skin, may be important considerations in tailoring interventions for these youth.

 

Topics: Research

Theresa Strong

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Theresa V. Strong, Ph.D., received a B.S. from Rutgers University and a Ph.D. in Medical Genetics from the University of Alabama at Birmingham (UAB). After postdoctoral studies with Dr. Francis Collins at the University of Michigan, she joined the UAB faculty, leading a research lab focused on gene therapy for cancer and directing UAB’s Vector Production Facility. Theresa is one of the founding members of FPWR and has directed FPWR’s grant program since its inception. In 2016, she transitioned to a full-time position as Director of Research Programs at FPWR. She remains an Adjunct Professor in the Department of Genetics at UAB. She and her husband Jim have four children, including a son with PWS.

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