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Trichotillomania: Great Impact, Low Clinician Recognition

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.”

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