“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.
“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(Drug information on 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(Drug information on 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(Drug information on 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(Drug information on cysteine), an amino acid and antioxidant that is available as a dietary supplement from health food stores; acamprosate(Drug information on acamprosate) (Campral), a new medication with antiurge properties that has been approved for the treatment of alcoholism; baclofen(Drug information on baclofen) (Lioresal), a muscle relaxant; isradipine (DynaCirc), a dihydropyridine calcium channel blocker used to treat hypertension; and ondansetron(Drug information on 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.)