Trichotillomania: Great Impact, Low Clinician Recognition

I grew up pulling out my hair really severely. When I was 13, I had no hair from the tops of my ears up. I thought that I was really a freak and really defective. I had no idea why I was doing this. It was very scary for me . . . . When I showed my mom, she started shrieking. When she took me to a doctor, he said,“Hmm, there is something really wrong with this girl.”

--Christina, age 50

I have pulled since fourth grade. . . . I felt so alone and isolated that I didn't want to go to school anymore.

--high school freshman

While these comments hint at the personal costs of trichotillomania (TTM), a more comprehensive picture of significant psychological effects and low diagnosis rates emerged recently with the presentation of findings from the Trichotillomania Impact Project-Adult (TIP-A).

The project--conducted by Douglas Woods, PhD, associate professor of psychology at the University of Wisconsin, Milwaukee, and colleagues-- explored the phenomenology and functional impact of chronic hair pulling in adults along with treatment utilization. ¹ Martin Franklin, PhD, one of the study investigators, presented study results at the recent 13th annual National Conference on Trichotillomania and related Body-Focused Repetitive Behaviors in Los Angeles.

While TTM was once thought to be rare, recent prevalence estimates indicate that it affects some 2% of the population, placing it alongside obsessive- compulsive disorder in lifetime prevalence. A number of large surveys of college students suggest that hair pulling is extremely common. One study, for example, found that 1.5% of males and 3.4% of females engage in hair pulling that results in visible hair loss.²

At the national conference, Franklin, who is assistant professor of clinical psychology in psychiatry and clinical director of the Center for the Treatment and Study of Anxiety at the University of Pennsylvania School of Medicine, discussed the rationale for conducting the TIP-A and shared some major findings.

On November 4 and 5, 2004, he explained, 22 experts in TTM from various scientific disciplines participated in a 2-day roundtable discussion sponsored by the National Institute of Mental Health and the Trichotillomania Learning Center, Inc (TLC).3 At that discussion, it became evident that more research was needed on the epidemiology, phenomenology, functional impairment, and treatment of TTM to make it possible to secure grant funding and other support, Franklin said. The next day, TLC's Scientific Advisory Board met and decided to develop an online survey for adults with TTM. The survey was approved by the institutional review board of the University of Wisconsin, Milwaukee, and was available from March through June 2005.

“When you are doing an online survey, you have to make some modifications as to how you are going to diagnose,” Franklin said. So, the researchers slightly modified the DSMIV- TR criteria for TTM as follows:

• Recurrent hair pulling with noticeable hair loss or thinning.
• Tension prior to pulling or when attempting to resist or, more broadly, pulling in response to some uncomfortable bodily sensation (eg, an itch or urge).
• Pleasure, gratification, or relief in response to pulling (not present in every patient).
• Hair pulling is not better accounted for by another disorder and is not caused by a general medical condition (eg, not pulling in response to voices or delusions).
• At least mild impairment (eg, social or occupational).

Of the 2500 adults who completed the survey, 1697 met those criteria. The age of participants ranged from 18 to 69 years, with a mean age of 30.9 years. Most participants were women (93%). Whites accounted for 87% of the participants, but “we also had 17 Native American (1%); 4% Hispanic; 2% African American; 2% Asian; and 2% multiracial [respondents], so we can look at similarities and differences across groups,” Franklin noted. The majority of the participants were single (54%), 37% were married, and 9% were divorced or separated. The participants were generally well educated, with half having completed 4 years of education after high school.

Trichotillomania

Measures used in the survey included the Massachusetts General Hospital Hairpulling Scale (MGH-HPS), a 7- question scale that measures the severity of hair pulling; the Sheehan Disability Scale, which is a composite of 3 self-rated 10-point Likert response subscales (0 = no disability, 1 to 3 = mild, 4 to 6 = moderate, 7 to 9 = marked, and 10 = extreme disability) to assess work, family, and social functioning during the past month; and the Depression Anxiety Stress Scale (DASS-21), a short form of a 42-item self-report measure of depression, anxiety, and stress.

Norms for the DASS-21 have been established for persons with no mental disorders, persons with depression, and persons with anxiety disorders, so it is a helpful instrument when making comparisons across groups, Franklin said. Virtually any body hair can become a target for pulling in TTM, although the scalp was the most common site found in the TIP-A survey (79%), followed by eyebrows (65%), eyelashes (59%), pubic region (59%), legs (30%), arms (17%), and other locations (25%).

On the MGH-HPS, which has 7 individual items, rated for severity from 0 to 4, and assesses urges to pull, actual pulling, perceived control, and associated distress, the average score was 16.4, which the researchers regard as clinically relevant TTM.

Significant impact

TTM has wide-ranging effects on sufferers, Franklin said, and those with more symptoms have more impairment. He explained that the researchers looked at subgroups that scored either high or low on the MGH-HPS.

Compared with the low-scoring group, the high-scoring group “reported more unpleasant urges prior to pulling and pulling to achieve certain bodily sensations (eg, relief and anxiety reduction),” said Franklin. “Yet while they [high scorers on the MGH-HPS] are pulling to achieve anxiety reduction, they are also describing an increase in anxiety as a result of pulling. So, an effort to reduce anxiety is actually producing it.”

The compulsive hair pulling often affects the individual's ability to maintain close relationships, to interact socially, and to manage tasks in the home, Franklin added. Among the survey participants, 40% said they avoided social events (eg, parties, reunions) as a result of their hair pulling, 36% said they avoided group activities, and 20% said they avoided taking vacations.

The impact was nearly as great in the occupational and academic arenas. “One out of four (23%) reported daily interference with job duties; 15% said they declined job advancement as a result of TTM . . ., 4% reported specifically they quit a job because of their pulling; this is not a trivial matter by any means,” said Franklin.

He suggested that the reluctance to advance in a job may emanate from the individual's fear that increased stress will result in increased pulling.

With regard to academic functioning, 76% reported difficulty with studying because of pulling, which is not surprising, Franklin said, since studying is a sedentary activity, and it is common to get stuck in the pulling process. More worrisome is that 24% reported missing school because of pulling and 5% dropped out of school because of it. TTM sufferers missed an average of 9 school days per year because of pulling.

When comorbidity was considered, Franklin said that an “alarming” 70% of the participants believed that pulling led to the development of an additional emotional disorder. In addition, 15% reported using tobacco to reduce urges to pull, 7% reported using alcohol, and 5% reported using other substances.

The researchers also compared DASS- 21 scores for the TIP-A participants with those of persons who had obsessivecompulsive disorder and a control group in a 1998 study conducted by Martin Antony, PhD, professor of psychiatry and behavioral neurosciences at McMaster University in Ontario.⁴ The TIP-A group had higher scores on the DASS-21 subscales for depression, anxiety, and stress than did those with obsessive-compulsive disorder or the control group.

“This is a really important finding,” Franklin said. “Obviously they [TTM sufferers] are much more depressed, anxious, and stressed than folks knew.”

Treatment utilization

“Knowledge about TTM is sorely lacking in treatment settings,” Franklin said, pointing to low diagnosis rates and participants' evaluations of their treatment providers.

Although participants in the study identified themselves as having TTM, 46% reported they had never had the condition diagnosed. Thirty-two percent said they sought help for a problem other than TTM, such as depression.

Participants who received some treatment were asked about the TTM expertise of their providers, and their comments were “a little alarming,” Franklin acknowledged. When asked if their treatment provider was an expert on TTM, only 3% responded yes. Twelve percent thought their provider knew a lot about the disorder; 32% thought their provider had “some“ knowledge of TTM; and 26% reported the provider had at least heard of TTM.

“Yet, there was a category even lower than that,” Franklin said; 27% reported their treatment provider was “not at all knowledgeable about TTM.”

Of those persons who sought help for TTM specifically, 42% received pharmacotherapy (primarily selective serotonin reuptake inhibitors), 31% received some form of behavioral therapy, 19% received general psychotherapy, 13% participated in a support group, and 12% received hypnosis.

Among those who received treatment, the efficacy rates were somewhat disappointing. While 17% reported being much or very much improved and 23% said they were minimally improved, 42% said their condition remained unchanged, 8% said it was minimally worse, and 10% said it was much or very much worse.

The data show that most persons with TTM have not made use of available treatments and that the available treatments “obviously need improvement,” Franklin said.

As a result of the survey, Franklin noted that several journal articles are being prepared, some of which are already in press. They will cover such topics as a review of the literature; TTM's primary impact; focused and unfocused pulling; TTM subtypes; ethnic/racial similarities and differences; TTM and other repetitive behaviors; and an MGH-HPS factor analysis. In addition, a similar survey examining TTM phenomenology, impairment, and treatment utilization in young people is planned.

Other meeting presentations

The need for more knowledgeable treatment providers and efficacious treatments was emphasized by several presenters at the Los Angeles meeting. Christina Pearson, founder and executive director of the TLC, a national nonprofit organization working to improve the quality of life for those who have TTM or related body-focused repetitive disorders, said that in two thirds of the calls she receives, she is unable to refer TTM sufferers or their families to knowledgeable treatment providers. In instances in which she can make a referral, the treatment specialist may be several hours away.

Trichotillomania

“So there is tremendous need,” she emphasized.

Jon Grant, MD, JD, MPH, an associate professor of psychiatry at the University of Minnesota, in his presentation on current knowledge and future directions of pharmacologic management for TTM, noted that TTM frequently goes unrecognized by clinicians. He cited a recent study that examined the prevalence of co-occurring impulse control disorders in adult psychiatric inpatients.⁵ Out of 204 consecutively admitted psychiatric inpatients who were screened, 63 (30.9%) had at least 1 co-occurring current impulse control disorder, and 7 (3.4%) had TTM. In addition, among the inpatients, 9 (4.4%) had experienced TTM during their lifetime. None of the patients later identified as having TTM by study investigators using structured clinical interviews had ever had the disorder diagnosed. Yet, “among people with trichotillomania, trichotillomania was the reason some said they were depressed enough to try to kill themselves,” Grant explained.

In discussing treatment approaches for TTM, Grant said that in the past 25 years, only 5 double-blind studies have looked at medications, and 2 have compared medications with psychotherapy.

"That [small number of studies] angers me, quite frankly," he added.

While acknowledging that “behavior therapy is helpful," Grant noted, "it still has not helped everybody.” One study comparing fluoxetine with behavioral therapy and with wait-list controls found that the behavioral therapy group showed significant improvement compared with the other groups.⁶ Another study comparing cognitive-behavioral therapy with clomipramine (Anafranil) found that the former was more effective.⁷

With regard to double-blind studies of treatment with medication, fluoxetine (Prozac) was more beneficial than placebo in 2 of 3 studies, Grant said. In a study comparing clomipramine with desipramine (Norpramin), clomipramine was more effective.⁸ In a comparison of clomipramine and fluoxetine, there was significant improvement with both medications.⁹ In a double-blind placebo-controlled trial involving naltrexone (Depade, ReVia), 3 (43%) of 7 patients receiving naltrexone had significant reduction of their TTM symptoms.¹⁰

Grant said he uses naltrexone in his clinic and has found that it is helpful for patients with TTM who express urges to pull. He pointed out that subtyping patients with TTM may be useful in providing more effective pharmacologic treatments tailored to individuals.

There are a multitude of new options that researchers are exploring, according to Grant. Among them are N-acetyl cysteine, an amino acid and antioxidant that is available as a dietary supplement from health food stores; acamprosate (Campral), a new medication with antiurge properties that has been approved for the treatment of alcoholism; baclofen (Lioresal), a muscle relaxant; isradipine (DynaCirc), a dihydropyridine calcium channel blocker used to treat hypertension; and ondansetron (Zofran), a cancer antinausea medication, which Grant has found helpful for skin picking and hair pulling.

In her concluding remarks at the conference, Pearson emphasized the importance of research such as that being conducted by Grant and by members of TLC's Scientific Advisory Board.

“We have got to do the science,” she said. “We have got to come up with the answers; we have got to come up with the treatment technologies and methodologies.”

(Editor's note: The author of this article has TTM and has used behavioral therapy and support groups as part of her treatment.)

References:

1. Woods DW, Flessner CA, Franklin ME, et al. The Trichotillomania Impact Project: exploring phenomenology, functional impairment and treatment utilization. Paper presented at: 13th Annual National Conference on Trichotillomania and Related Body-Focused Repetitive Behaviors; March 4, 2006; Los Angeles.
2. Christenson GA, Pyle RL, Mitchell JE. Estimated lifetime prevalence of trichotillomania in college students. J Clin Psychiatry. 1991;52:415-417.
3. National Institute of Mental Health and Trichotillomania Learning Center, Inc. Meeting summary: scientific advances in trichotillomania and related body-focused repetitive behaviors. Available at: http://www.nimh.nih.gov/scientificmeetings/ trichotillomania.pdf. Accessed April 2, 2006.
4. Antony MM, Bieling PJ, Cox BJ, et al. Psychometric properties of the 42-item and 21-item versions of the Depression Anxiety Stress Scales (DASS) in clinical groups and a community sample. Psychol Assess. 1998;10:176-181.
5. Grant JE, Levine L, Kim D, Potenza MN. Impulse control disorders in adult psychiatric inpatients. Am J Psychiatry. 2005;162:2184-2188.
6. van Minnen A, Hoogduin KA, Keijsers GP, et al. Treatment of trichotillomania with behavioral therapy or fluoxetine: a randomized, waiting-list controlled study. Arch Gen Psychiatry. 2003;60:517-522.
7. Ninan PT, Rothbaum BO, Marsteller FA, et al. A placebo-controlled trial of cognitive-behavioral therapy and clomipramine in trichotillomania. J Clin Psychiatry. 2000;61:47-50.
8. Swedo SE, Leonard HL, Rapoport JL, et al. A double-blind comparison of clomipramine and desipramine in the treatment of trichotillomania (hair pulling). N Engl J Med. 1989;321:497-501.
9. Piggott TA, L’Heues F, Grady TA, et al. Controlled comparison of clomipramine and fluoxetine in trichotillomania. Paper presented at: 31st Annual Meeting of the American College of Neuropsychopharmacology; 1992; San Juan, Puerto Rico.
10. Christenson GA, Crow SJ, Mackenzie TB, et al. A placebo-controlled double-blind study of naltrexone for trichotillomania. Paper presented at: American Psychiatric Association Annual Meeting; May 1994; Philadelphia.