Rookie Researcher : Aggressive Recruitment (Part 4 of 8)

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Running a research study is a lot like starting a band. You start with an idea (usually that idea is ‘I should start a band’). You persuade some of your peers to join you – in my case, I had Ally on bass, Carrie on guitar, and Renee on drums. You take your time setting up, practicing, making sure everything is up to snuff; we did about 2 months of prep work tuning our tasks, seeking permission for the questionnaires we were using, reading journal articles til the word ‘trichotillomania’ looked like no more than a jumble of Latin stems.

The next step was, of course, finding an audience. No one wants to be performing for their grandparents when they could be playing Madison Square Garden (sorry grandpa).

Even in such a big city, it’s beyond difficult to find people open to admitting they battle trichotillomania (OCD, too) – I know I felt all alone in my struggle for many years. Which is why my biggest worry was simply that no one would show up to participate, and in order to quell that worry, I had to overcompensate. Our strategy to advertise and attract people was “aggressive recruitment”, and here’s what it entailed :

  • Telling EVERYONE we knew. This was mostly me, since I was always looking for an excuse to bring it up into conversation. I can’t say how many people were internally begging me to shut up about it, but every once in a while, someone would say, “my roommate does that” or “wait, there’s a name for that ? I totally do that…”. A couple participants were people I recognized, and a few more were friends of friends. On a campus of over 20,000 people, word of mouth is a powerful thing.
  • Incessant emails to the freshmen. Our Intro Psych student pool uses a system called SONA to sign up for research credit. SONA is an almighty pain to maneuver, but it did bring us about half of our participants, so it was worth the hassle. One of the nice things about SONA was that, aside from the fact we could pay these students in credit instead of cash, all students took our questionnaires at the beginning of the semester and we could reach out specifically to the ones who were eligible…every week.
  • Flyers, flyers everywhere. Every bus stop and coffee shop, every bulletin board and naked wall. I designed an exquisite flyer with pull-out tabs, and everyone on the team scoped out the ones en route to their classes. One of my favorite pieces of news would be the excited “Someone took a tab from the flyer !!!!!!!!” text with way too many exclamation marks. There was even one flyer that, over time, lost all its tabs to curious passersby, and we were all ecstatic !
  • Clinician cold calls. These were my ultimate least-favorite strategy, and I don’t think we got a single referral this way. Nobody in Syracuse treats TTM, and very few treat OCD. The list I put together from the Interweb was realistically useless, and with my dismal phone anxiety, we hardly called half the numbers on the list. The only good thing that came out of our cold-call stint was that I found out exactly how bad of a telemarketer I would be.
  • Listservs. This was the equivalent of sending a “reply all” message to a few thousand kids. The psychology kids, the neuroscience kids, the pre-med kids. Everyone acts like they don’t read those mass emails, but they do; this worked like a charm.
  • Crashing Lectures. Timid, neurotic me never expected to do this, but to my surprise, I reached a lot of people and also got to skip a lot of class, which was always nice. I’m sure my professors also liked having a 10-minute break from teaching (you’re welcome, professors). I can’t say how many times I was referred to as “that girl who talked about hair pulling in my class that one time”, but it was a great icebreaker – especially when a cute Scandinavian boy revealed that he would much rather be doing research like me than continue at his current job, nude modeling for the art department. My adviser walked by at that exact moment and heard the whole thing…mortified doesn’t begin to cover it.
  • TLC. I can’t deny that TLC was a big, gigantic help. After putting our study on their website, sending out a mass email, posting social media blasts, referring us to the Syracuse BFRB support group, and all the other things they did that I am ever so grateful for, we started getting emails from all kinds of people interested in the study. In case you don’t hear this often enough, TLC, you’re awesome.

One of my biggest points of pride about this study is that with all the work we did to make sure we were heard by thousands of people, we took the first steps to building a small local community of people with BFRB’s. They came from the university and the city alike, young and old, armed with stories of downfall and recovery. Something I absolutely adore about this community is how eager everyone is to participate in research. You all know how important it is to make advances in the field and how much it affects your future treatment. Trichsters are on the cutting edge of science, you should never forget that.

My duty was to be as loudmouthed as possible, at the very real risk of being annoying, in order for a small handful of people to feel important and special, and contribute to something bigger than themselves or their BFRB. We wanted our audience to climb onstage with us for the encore, and they did just that.

Miss the other installments of Rookie researcher?
Read Part 1 –>

Part 2 –>

Part 3 –>

imageKimi Skokin is a recent graduate of Syracuse University, studying psychology and neuroscience. She attended her first TLC conference in 2015, both as a puller/picker and as a student researcher. Her interests include Hello Kitty, Kurt Vonnegut, and teaching her peers how to pronounce trichotillomania.

Secrets from a TLC Professional Member and Former Trichster

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Hi Colleagues, can I let you in on a couple of secrets?

Having just returned from the 2015 TLC conference and completing the Professional Training Institute (PTI), I can tell you both are not to be missed! I have been a therapist for more than 30 years and the PTI training was one of the best investments I have ever made in terms of time and money spent. The TLC conference was all I had been told it would be: informative, humbling, cathartic, a life changing experience. If you are a professional with the slightest interest in treating BFRBs, you owe it to yourself, and your clients, to attend the next PTI training this fall and the TLC conference next spring. You won’t be disappointed!

Cathy is a graduate of the TLC Professional Training Institute (PTI).
Cathy is a graduate of the TLC Professional Training Institute (PTI).

The other secret is personal and until recently, I hadn’t shared it with anyone in nearly 45 years. I have Trichotillomania.   My ”habit”, as my family liked to call it, started at about age 7 and stopped when I was 13. I only pulled my eyebrows and eyelashes, never from my head. My brows and lashes grew back, but they did not look the same. Gone were the long lashes and thick brows I had inherited from my mother. I have no idea why, but I have not pulled in a noticeable way since puberty.  This makes my Trich experience somewhat unusual, but what is not unusual is the almost daily urge and desire to pull, which never goes away. Such is the power of this disorder!

Growing up on a cattle ranch in rural Missouri, I can assure you Trichotillomania was not a topic people discussed over their biscuits and gravy at the main street cafe on Saturday morning!   I can say with certainty, nobody in my small town had ever heard of it. On the other hand, if I had been a cow and developed Bovine Trichomonasis, (yes, there is such a thing), the veterinarian would have been summoned, and, in no time, arrived to fix the problem.

Trust me when I tell you cattle were worth a lot of money where I came from and usually received the best care available. Alas, I was not as lucky as the cows. Instead, I made the trip to town to see the family doctor who informed my mother he had no idea what was wrong with me, but I should stop it before I lost all of my brows and lashes! That was the treatment plan-just stop it! (Bob Newhart couldn’t have said it any better than our doctor did that day). Sense of humor aside, it was devastating to find out I had a strange disorder the doctor didn’t know anything about. I will never forget hearing my mother tell my father “it” doesn’t even have a name, but if I chose to stop I could. The shame of it was unbearable.

I was in college before I came across the word Trichotillomania. I couldn’t pronounce it, but oh the relief to know it was a real condition! Coincidentally, I discovered TLC at the same time and promptly called for information. The TLC materials arrived within a week, but when I opened the packet and started reading, I was overcome with a profound sense of shame and self-loathing like nothing else I had experienced before. I couldn’t file that information away fast enough!  It stayed in the back of the file cabinet for 15 years until it was “rediscovered” during a move to a new office.   Immediately, I went from the file to the TLC website and there it was: professional training was being offered in 2 months in one of my favorite cities no less. This time there was no hesitation and no feelings of shame, I would definitely be there. Since completing the PTI training in 2014 and putting a professional listing on the TLC website, I have watched my practice grow by leaps and bounds! The best part however, is how much I enjoy the work. I have not felt this satisfied with my career in a very long time-maybe ever. I can’t thank Charley, Fred, and Renae enough for giving me the knowledge and tools to launch this new chapter in my life. A big thank you also goes to the TLC community for giving me the courage to share my story.

Cathy is in private practice in Woodbury, Minnesota. She is also an adjunct faculty member at the University of Minnesota where she encourages social work students to learn about treating BFRBs. Contact Cathy at www.bridgesandpathways.com or clchavez@umn.edu.

Rookie Researcher : The Team (Part 3 of 8)

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Rookie Researcher 3 : The Team

Being a college student, one gets a lot of proverbial hat hair. If you’re making the most of your college experience (or in my case, if you’re trying to rush to graduate a year early in order to save yourself 60 grand), you’ll be so busy, you’ll need to schedule your bathroom breaks and deep breaths several days in advance. Here are some of the hats I wore my final semester of college : student (or as some of my professors would prefer, smart-ass), research assistant at the VA, volunteer at Planned Parenthood, library worker, tutor in two places, lab coordinator, magazine editor, friend/classmate, and oh yeah, investigator of a research study !

Coming into college as a hardcore introvert, having to work with people in many different contexts on a daily basis really toughened me up. In order to succeed, you have to learn how to lead, follow, and work side-by-side with others, while still continuing to do certain things on your own. So many hats. In research, everything is collaborative – this is why most labs have an organized hierarchy of full professors, assistant professors, postdocs, grad students, undergrads, and that one guy who’s always in lab but never really does anything. My study had no such structure. The thought of having to bear the brunt of this project all by myself terrified me, and I knew I needed to assemble a team.

This team was assembled on merit, but what happened next can only be described as serendipity. I first reached out to Carrie and Ally, who I had worked with the previous year, then to round out the group came Renee, who I’d worked with at the VA. I basically hand-picked the hardest workers I could find, so I got lucky that they all agreed. We were all business, at first. I was pondering how in the world I could get these three bright girls motivated to learn more about TTM and OCD – these were two tiny clinical populations, both surrounded by a heap of stigma. My motivation was intrinsic, but I was afraid their’s wasn’t. But I suppose I became so open about my personal struggle with trich (I had just come off a four-month pull-free streak, when a falling out with a friend led to an ugly relapse), that the admissions came shortly after, all within the same few weeks :

“Oh yeah, I have OCD. I count my steps. It used to be much worse, but I still do it.”

“Oh yeah, I had to take time off from school to get treatment for my OCD.”

“Oh yeah, I used to pull out nearly all my eyelashes when I’d get really stressed.”

I was floored. What are the odds ? I’ll tell you – if the established prevalence rate for TTM is about 4% (1 in 25, for now), and the prevalence rate for OCD is around 1%, the odds that our merry band would all have history of OCD or TTM is 0.000016% (you’ll have to double-check my math, of course).

I will always propound that psychology benefits from case study, especially the scientist’s. My experiences with TTM are a major asset in my career in research – I know which questions remain unanswered, how to explain a scientific idea to someone in a relatable way, and how a participant might want to be treated during the course of the experiment. The whole setup of my experiment was deliberate, designed to help myself, really. Maybe by approaching my battle from an empirical standpoint I could make some sense of what was underlying these uncontrollable behavior patterns I’d had for almost a decade. I’m not sure when it became apparent to me that this was a community project, not a Kimi project, but it’s not about me anymore. It became about being around to give directions, to ask the tough questions, to point out a participant walking through the door and say, “You see ? You are not alone.”

It’s easy to tell someone that they’re not alone, and another thing to gather proof. One of my favorite moments was driving to Liverpool, the four of us, getting ready to share our stories to the TTM support group there. Our arcs were all similar – we’d had our low points where it all seemed hopeless, then stasis, and now some kind of upswing. We were girls who had spent all our lives isolated from others with our same problems, who’d beaten infinitesimal odds to come together and prove to one another that we weren’t alone. And because of our shared struggle, we made one hell of a team.

Miss the first installment of Rookie researcher? Read it here –>

imageKimi Skokin is a recent graduate of Syracuse University, studying psychology and neuroscience. She attended her first TLC conference in 2015, both as a puller/picker and as a student researcher. Her interests include Hello Kitty, Kurt Vonnegut, and teaching her peers how to pronounce trichotillomania.

Research Update: The ComB Treatment Development Study

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Submitted by the team at the Clinical Psychology Research Lab at American University

Your donations at work – The ComB Treatment Development Study was directly funded by TLC members and donors – people just like you!

The Clinical Psychology Research Lab at American University, directed by David Haaga, has recently completed several projects about trichotillomania (TTM), including a treatment development study of the Comprehensive Behavioral Model (ComB) and a study about the social and economic impact of TTM. The ComB treatment development study, directed by David Haaga and Charles Mansueto (Behavior Therapy Center of Greater Washington), was completed in January 2015. This study aimed to concretize and pilot test ComB for TTM, with the ultimate goal of rigorous testing of the efficacy of the model. ComB was developed to provide therapeutic strategies for managing the distinct factors that maintain individuals’ hair pulling (Mansueto, 1990).

Sixteen patients were treated with the ComB manual, which was written by Charles Mansueto, Ruth Golomb, and Suzanne Mouton-Odum and revised according to feedback from both study patients and therapists. Attendance and treatment satisfaction were both high, suggesting that the treatment was highly acceptable to patients. ComB study therapists were found to reliably select interventions from the manual more than therapists who had not been trained in the manual, which is important for ensuring consistency with the ComB model that can generalize across therapists. Additionally, a measure of therapist adherence was developed and pilot tested, which had good reliability results.

Results showed that TTM symptom severity and related impairment improved at post-treatment and began to slightly decline at three-month follow-up. Unfortunately, decline at follow-up has been a trend in TTM treatment studies (Falkenstein et al., 2014). Quality of life also improved at post-treatment, and continued to stay improved at follow-up. Improvements in self-reported TTM symptoms had large correlations with improvements in quality of life, disability, and depressive symptoms. Overall, the ComB treatment study has resulted in the development of a manual and measures to be used in a future randomized controlled trial of the ComB treatment model for TTM. Preliminary results about the efficacy of ComB treatment are promising. The ComB approach to treatment is important to investigate further because it allows clinicians to expand the scope of current cognitive-behavioral treatment for TTM by maximizing the amount of tailoring therapists can do for each hair puller’s unique presentation.

David Haaga’s lab at American University has also been investigating the social and economic impact of TTM. Results further demonstrate that individuals with TTM spend a great deal of time on hair pulling behaviors and experience social avoidance, interpersonal difficulties, occupational difficulties, and economic strain. More specifically, those struggling with hair pulling may spend three hours per day on hair pulling behaviors and hundreds of dollars on products to conceal the effects of hair pulling and/or treatment to reduce hair pulling.

Additionally, data suggested that economic costs significantly correlate with symptom severity; however, social costs, time costs and work-school costs did not correlate with TTM symptom severity. In other words, an individual with more severe TTM symptoms will likely spend more money on products and treatment for TTM, compared to an individual with less severe symptoms. Conversely, more severe symptomatology was not associated with more difficulties at work, relationship distress and/or time. Thus, treatment for TTM may help a patient reduce their symptoms, but their social life may not improve with treatment. Accordingly, it is important to consider interpersonal and daily functioning, in addition to symptom reduction, with respect to treatment outcomes.

Falkenstein, M. J., Rogers, K., Malloy, E. J., & Haaga, D. A. F. (2014). Predictors of relapse following treatment of trichotillomania. Journal of Obsessive-Compulsive and Related Disorders, 3, 345-353.

Mansueto, C. S. (1990, November). Typography and phenomenology of trichotillomania. Paper presented at meeting of the Association for the Advancement of Behavior Therapy, San Francisco, CA.

Rookie Researcher : The Obstacles (Part 2 of 8)

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Rookie Researcher : The Obstacles

Anybody can have an Eureka moment – heck, if I had a nickel for every half-baked concoction of mine, I’d have a trust. Some say there’s a link between creativity and mental illness, and for the short while I’ve been immersed in the TLC community, I believe it! I’ve known actors, artists, photographers, writers, musicians, vloggers (our modern storytellers), the list goes on, who pick and pull. Do we flourish creatively because of our BFRB’s, or do our habits arise from the expression of hyperactive hands and eyes that are meant to be molding ideas? We may never know. All I know is that the majority of half-baked ideas burn to a crisp; ideas are worth little unless acted upon. So once I had my Eureka moment, I meant to actually implement it…but I learned quickly that this process is hard, even harder when dealing with something as mysterious as TTM.

The first thing was the paperwork. The Eureka moment happened in July, and our first participant wasn’t run until late January. The initial protocol was unlike anything I’d ever seen…they wanted every detail, details that I didn’t even know yet! I had no idea what half the questions even meant, which entailed a lengthy talk with my adviser during syllabus week while both of us were still in summer mode. If it sounds like it felt akin to pulling teeth, then I left the office that day with sore gums and a lot of marks made in red pen…

Oh, then there were the appendices that needed to be attached! I have a feeling they are called appendices because they’re virtually useless and I badly wanted them removed (actually, they were far from vestigial, but that didn’t stop them from being totally annoying). Consent forms, recruitment flyers, more scripts than if I were writing a play, they all had to be created from scratch or borrowed from someone who actually knew what they were doing. Then I submitted it all, wondered when I would finally get to start the fun stuff, heard back a month later with about a dozen major modifications, and effectively lost all hope.

Actually, the long delay before my study’s approval was partially my fault because I never really learned math, I think I’d just faked it since the second grade. You see, standard rules of compensation hold that a participant gets paid around $0.05 for every minute they are in an experiment. For a 90 minute experiment, that amounts to four and a half buckaroos…how I calculated that I’d need to pay each subject $45 still makes me scratch my head. What was so fabulous about this whale of a mistake was that only the IRB (the approval board) caught it, even though it had been shown to my adviser, my whole team, my mother (who was a math major), and a grant committee that gave me a thousand dollars with that figure in the budget. I still can’t help but laugh when I’m reminded of my big giant gaffe. Unfortunately, word got around, and they’re making me go back and repeat the second grade.

On a more serious note, another thing you must learn if you want to research BFRBs is to make do with what you’ve got. Unless you are very, very lucky, chances are your adviser or mentor will know very little about BFRBs. My university doesn’t have a single professor specialized in anxiety or OCD, let alone TTM. My adviser’s specialty was cognitive modeling, worlds away from TTM, but I included a cognitive component in my experiment especially so I could capitalize on his expertise. I annotated several of his papers to oblivion, and after a while, he started sending me papers he stumbled across about executive function in the OCD spectrum. Research consists of one learning experience after another; every researcher has something to contribute if you only look hard enough. I still run the risk of not being taken seriously by not properly collaborating with a TTM expert, but stepping outside my niche remains one of the best decisions I made for the study.

So that’s how I spent the 6 months between my Eureka moment and my ‘holy-sh*t-this-is-really-happening’ moment: shuffling through mountains of paperwork, becoming an overnight expert in cognitive psychology, and mostly bumbling around without a clue. There are going to be obstacles at every step of the way, so like a chess master, you must be three steps ahead at all times. Foreseeing the problem that might never exist will save a lot of trouble in the end. Ask a lot of questions, seek out people who might know a thing or two, be patient, be realistic, be open-minded, all that jazz. Mastering the prep work will make the fun stuff that much more magnificent.

Oh, and one more thing: always double-check your arithmetic.

Miss the first installment of Rookie researcher? Read it here –>

imageKimi Skokin is a recent graduate of Syracuse University, studying psychology and neuroscience. She attended her first TLC conference in 2015, both as a puller/picker and as a student researcher. Her interests include Hello Kitty, Kurt Vonnegut, and teaching her peers how to pronounce trichotillomania.

BFRB Precision Medicine Forum: Updates and Next Steps

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Get the latest news on the BFRB Precision Medicine Initiative (BPM) plus more updates from TLC in this special release of our Member Newsletter:

To subscribe to TLC’s quarterly newsletter, become a member and support TLC programs like the ground-breaking BPM Initiative.

TLC members support our mission is to  end the suffering and isolation caused by body-focused repetitive behaviors. Members are the core community that makes that possible. We can only achieve this with your support!

Rookie Researcher : An Idea (Part 1 )

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Rookie Researcher is an 8-part serial on what it’s like to do research on trichotillomania while also being a regular college kid who struggles with trichotillomania.

By Kimi Skokin

The truism my first psychology teacher used to sell me on what is now my career path was this : “psychology is EVERYTHING.” It’s an art and yet a science, theoretical and yet practical, individual and yet social. The brain is the seat of what makes us human, the champion of evolution, and simultaneously the source of all, sometimes egregious, human error.

Similarly, research is equal parts empirical and creative, at the same time requiring fastidiousness and passion. When I first started college, under the impression that my psychology education would be more liberal arts-y in nature, all the systematic and stiff rules of experimental design bored me to tears. It wasn’t until my first research experience that I actually appreciated how much thought goes into a research study. Each seemingly standardized tenet becomes a subjective judgment call, and each seemingly meaningless detail, like what kind of folders you’re using or extraneous commas in your analysis code, makes a world of difference.

When I set out to start my own research study in July of last year, I knew all this, to some degree. Until that point I had presented some posters, scheduled some participants, tried my hand at coding, and thought I knew everything there was to know (boy, was I wrong).

One of the things that nobody told me, from the jump, was that an ‘idea’ for a research study is not actually an idea proper. It’s actually more of a Frankenstein’s monster of dozens of smaller, half-baked ideas. The only thing I knew for sure was that I wanted to study TTM, because I was just starting to come out to my peers about my condition, and so few people knew anything about it that I knew it would get people’s attention.

So TTM was my jump-off point. The next conclusion I came to was that by comparing TTM to a better-known disorder in some way, I could get some relative answers. The question then became which one, because TTM could co-occur with just about anything – depression, anxiety, PTSD, eating disorders, bipolar, OCD, other BFRB’s…and then I remembered that TTM wasn’t classified where it had been a year prior. I wondered what were the arguments for and against changing the location, and I tried to exhume my own opinion. As someone with more than one fixed pulling style (as most of us are), I could make a case for TTM as an impulse-control disorder given how often pulling feels out of my control, and on the other hand, I could also make a case for TTM as an OCD spectrum disorder because of how often it feels like a ritual to get the kinks out of my hair (even though I’ve stopped pulling, I still find myself cutting the kinks out of my naturally curly hair with scissors sometimes).

Fun fact : even after seeing the preliminary results, I’m still just as confused about where TTM belongs as I was last July. And at the TLC conference this year, one of the researchers I met who had a hand in the classification change said that ‘no one was completely happy with where it was, and no one is completely happy with where it is now’, so I’m not the only one.

I had a good start – a quandary that still baffles me and the scientific community to this day. And I knew of some self-report measures from the clinic I was volunteering at that I could use. And my adviser told me about some cognitive tests that he already had codes for (including one test that had never been used on people with TTM before). And I had old notes from my Research Methods and Stats courses on how to carry all this out. And I started finding papers where people much smarter than myself were talking about the same thing in loftier terms.

After some time, all these mini realizations snowballed into something that started to sound coherent. I’d stitched and stapled my monster of an idea together with all the bells and whistles, and lo and behold, it was actually viable!

Read Part 2 –>

imageKimi Skokin is a recent graduate of Syracuse University, studying psychology and neuroscience. She attended her first TLC conference in 2015, both as a puller/picker and as a student researcher. Her interests include Hello Kitty, Kurt Vonnegut, and teaching her peers how to pronounce trichotillomania.