Patients on average spent between 1 and 8 hours per day preoccupied with negative thoughts about their perceived [mal]odor.
The high risk of suicidality in patients with olfactory reference syndrome (ORS) was among the new research findings disclosed at the American Psychiatric Association’s recent annual meeting in New Orleans.
“Reports over the last century suggest that ORS is very clinically important,” said Katharine Phillips, MD, director of the Body Dysmorphic Disorder and Body Image Program at Rhode Island Hospital, professor of psychiatry at Brown University in Providence, and a DSM-5 Task Force member.
At a press briefing, Phillips explained that patients with ORS are preoccupied with the belief that they emit a foul or offensive body odor, which is not perceived by others.
“They suffer tremendously as a result, appear to be very impaired in terms of their functioning and appear to have a high risk of suicidality,” she said.
ORS may be more common than generally recognized, according to Phillips. She cited a questionnaire of 2481 students in Japan, in which 2.1% reported being concerned with emitting a strange body odor during the past year.
“We can’t assume that is equivalent to the clinical syndrome of ORS, but it does suggest that ORS could be relatively common. It is certainly underrecognized and minimally studied,” she added.
Listen to Katherine Phillips, MD, discuss
olfactory reference syndrome in this podcast.
To better understand the syndrome and to stimulate further research, a DSM-5 Work Group and others1 have drawn up research diagnostic criteria for ORS and have proposed that ORS be included in the DSM-5, most likely in the Appendix of Criteria Sets Provided for Further Study. While DSM-IV does not explicitly mention ORS, Phillips said, some of its clinical features are discussed in the text on delusional disorder and social phobia.
Phillips reported on her small, recently completed study that systematically examined the clinical features of ORS in 20 individuals in whom the syndrome was diagnosed.2 The researchers examined some previously unstudied aspects of ORS and used several standardized measures that had not been used in earlier studies. These included the Structured Clinical Interview for DSM to assess comorbidity, the Brown Assessment of Beliefs Scale to assess insight/delusionality and referential thinking, and a slightly modified version of the Yale-Brown Obsessive-Compulsive Scale for Body Dysmorphic Disorder to assess ORS severity.
The average age of the patients in the study was 33.4 years, and on average, they had been suffering from ORS since they were 15 or 16 years old. Sixty percent were female. The most common comorbid disorders experienced over their lifetime were major depressive disorder (85%); social phobia (65%); and substance use disorders, including both alcohol and other drugs (50%).
Patients on average spent between 1 and 8 hours per day preoccupied with negative thoughts about their perceived odor (eg, I smell horrible). Eighty-five percent had delusional ORS beliefs (ie, complete conviction that they smelled bad), and 77% had current ideas or delusions of reference. For instance, they misinterpreted others’ actions, such as opening a window or rubbing of the nose, as being a reaction to their offensive smell.
Social isolation was prevalent among these patients, Phillips reported. Three-quarters of the patients said they had at some time avoided social situations entirely and 40% admitted remaining housebound for at least 1 week.
“I interviewed all the patients in the study, spent a lot of time asking them about their symptoms and treated some of them,” Phillips said. “I am so struck by the incredible distress that they experience and by the incredible sense of social isolation and social ostracism they feel. They believe people are laughing at them or mocking them.”
A majority of the patients (68%) had a history of suicidal ideation, and 47% attributed the ideation to the distress caused by ORS symptoms. Thirty-two percent had attempted suicide, and 16% had made at least 1 attempt that they attributed primarily to ORS. More than half (53%) had been hospitalized for a psychiatric disorder, with one-third of the sample attributing at least 1 hospitalization primarily to their ORS symptoms.
Seeking treatment from nonpsychiatrists to diminish the perceived body odor was common (44%). Some patients, Phillips said, went to dentists for perceived halitosis, dermatologists if they thought they had foul-smelling sweat, or gastroenterologists for perceived anal odors. One individual had tonsils removed, hoping the removal would eliminate perceived bad breath.
“So, 44% sought such nonpsychiatric treatment and about one-third actually received it,” Phillips said. “We found that in no case did these treatments diminish the worry about the perceived body odor.”
In the study, 75% of the participants felt the odor was coming from the mouth, followed by armpits (60%) and genitals (35%).
Nearly all the participants (95%) engaged in ORS-related compulsive behavior, Phillips said, such as smelling themselves (80%), showering for hours every day (68%), changing clothes frequently, and seeking reassurance from other people that they smelled okay. Nearly all the patients attempted to mask the perceived odor, usually with perfume/powder, deodorant, mouthwash, gum, or mints.
Asked about treatment, Phillips responded that some “promising treatments” exist. A variety of case reports, she said, indicate that cognitive-behavioral therapy is helpful. Based on her clinical work and review of the literature, Phillips added that serotonin reuptake inhibitors also might be beneficial.
Unfortunately, there is a dearth of treatment research,3 even though these patients suffer tremendously.
References1. Feusner JD, Phillips KA, Stein DJ. Olfactory reference syndrome: issues for DSM-V. Depress Anxiety. 2010;27:592-599.