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.
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.
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(Drug information on 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.”