Clinical features of olfactory reference syndrome: An internet-based study
Introduction
Persistent preoccupation with body odor has been described in various neuropsychiatric and psychological disorders since 1891 [1]. Olfactory concerns are a prominent feature in various conditions cross-culturally (e.g., Taijin kyofusho in Japan and Korea) and across diagnoses (e.g., olfactory hallucinations in schizophrenia, major depression, and eating disorders) [2]. Olfactory reference syndrome (ORS), a severe and impairing psychiatric condition characterized by a preoccupation that one emits a foul or offensive odor, was first introduced by Pryse-Phillips [3] in a detailed description of 36 cases of individuals with olfactory symptoms. The clinical features and associated symptoms of individuals with perceived body odor have subsequently been noted in various case reports and series [3], [4], [5], [6], [7], [8], [9], [10], [11], [12]. In case reports, individuals with ORS have been shown to engage in time-consuming rituals aimed at masking or fixing the odor [4], [9], [12], [13], avoid social situations [11], experience impaired work functioning [4], exhibit significant distress [5], report suicidal ideation and past suicide attempts [3], [12], [14], [15], and sometimes become housebound [4]. Despite the marked severity and impairment associated with ORS, empirical research on ORS is extremely limited.
ORS was first categorized as an atypical somatoform disorder in the DSM-III [16] and later as an example of delusional disorder of somatic type in DSM-IV-TR [17]. However, its categorization has been controversial [4], [15]. Recent research findings challenged the appropriateness of categorizing ORS as a delusional disorder since the core belief is not always held with delusional conviction [12]. Moreover, the clinical presentation of ORS (i.e., obsessions about personal odor and compulsive odor-related behaviors) and its preferential response to selective serotonin reuptake inhibitors (SRIs) overlap significantly with obsessive-compulsive spectrum disorders and suggest a more accurate classification as part of the obsessive-compulsive and related disorders [5]. Indeed, the DSM-5 Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic, and Dissociative Disorders Workgroup highlighted the importance of studying ORS and suggested adding ORS to the Appendix of Criteria Sets Provided for Further Study [18]. Olfactory reference syndrome currently appears in DSM 5 under “Other Specified Obsessive Compulsive Disorders” as Jikoshu-kyofu, a variant of taijin kyofusho characterized by fear of having an offensive body odor [19].
In order to better understand the classification and treatment of ORS, it is critical to first investigate its clinical and epidemiological features. Thus far, research on ORS has been limited to case reports, case series, and theoretical papers. Samples have included individuals receiving treatment in specialty OCD treatment clinics [5], [12] and inpatient samples [3], which may not accurately reflect the prevalence and features of ORS in the general population. Little is known about the features of ORS in a widely ascertained community sample.
The current study expands on previous findings by investigating the clinical features of ORS in a diverse, community sample. We used internet sampling procedures in order to ascertain a broad sample of individuals with self-reported ORS and to increase the generalizability of the results. Since patients with ORS often feel ashamed and embarrassed about their concerns [3], we hoped that the anonymity of the project would allow individuals who may otherwise be too ashamed to discuss their concerns or seek mental health treatment to participate. Although internet sampling procedures are not without limitations, several studies have demonstrated that data gathered via the Internet may be as reliable as data collected with paper and pencil measures [20], [21], [22].
Understanding the clinical features of ORS and putative overlap with other disorders (e.g., obsessive-compulsive disorder [OCD] and body dysmorphic disorder [BDD]) will help inform diagnostic classification and treatment. This study is the first systematic examination of the clinical features of ORS in the general population. The primary purpose of this study was to enhance our understanding of the diagnosis and treatment of individuals suffering from ORS. Since ORS is often undiagnosed or misdiagnosed in clinical settings, gathering information on the clinical presentation of ORS will aid clinicians in diagnosing future patients.
Section snippets
Participants
The Institutional Review Board at the Massachusetts General Hospital approved all recruitment and study procedures. Participants were recruited online (e.g., advertisements on internet search engines and support group forums), through letters to local clinicians, and flyers posted in the community. Recruitment materials provided a link to the survey, which operated from January 2010 – March 2010. Participants were included if they were 18 years or older, proficient in English, and had
Results
Descriptive statistics of the demographic and symptom-related characteristics of the sample are depicted in Table 1.
Discussion
The clinical features of ORS are complex and heterogeneous, as evidenced by our findings. Individuals reported multiple and wide-ranging sources of preoccupation. Additionally, participants detailed distressing, time-consuming rituals and avoidance behaviors. ORS symptom severity was associated with poorer insight; however, there was a broad range of insight. Dimensionality of insight is consistent with other obsessive compulsive and related disorders (e.g., OCD and BDD) and has implications
Competing Interest Declaration
All authors have completed the Unified Competing Interest form at http://www.icmje.org/coi_disclosure.pdf. The authors declare that they have no competing interests to report.
Acknowledgments
The authors would like to thank the participants for their time and fruitful contributions to this study.
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