Barriers to Diagnosis and Treatment
by Monnica Williams, Ph.D.
OCD found in all racial groups
Great strides have been made in developing effective treatments for people with obsessive-compulsive disorder (OCD), but not all segments of our society have benefited. African-Americans experience OCD at similar rates as the general population, but are less likely to receive treatment. Among those with severe OCD, 93% of Americans receive some type of treatment but only 60% for African-Americans do. Even among those who are able to access care, few African-Americans receive specialized treatment, and only 20% are using an SRI medication, the most effective medication for OCD.
No Blacks to be Found at OCD Specialty Clinics
The DSM-IV field trial, one of the largest studies of Americans with OCD, was devised to better understand the symptoms of OCD. The study examined patients at top OCD specialty clinics at five urban sites. However, out of 454 participants, only 2.8% were African-Americans, whereas 94.6% were European-Americans. The absence of African-Americans being assessed or treated at these specialty clinics supports the finding that black people less likely to receive the most effective treatments for OCD. As a result, African-Americans are more likely to experience lifelong disability from this treatable disorder.
Little is known about African-Americans with OCD
African-Americans are absent in OCD specialty clinics and are also under-represented in research studies. In the scientific literature, there are almost no published studies focused on the diagnosis, assessment, or treatment of African Americans who have OCD. Thus, there is much we do not know about the treatment of African-Americans with OCD, using medication or psychological therapy.
The small amount of work that has been done examining African-Americans with OCD has found some striking differences from European-Americans. For example, black Americans were more likely to have a later age of onset (32 years), as opposed to late adolescence (19 years). Later age of onset is associated with greater severity, poorer insight, and a higher chance of having other disorders. Once black patients meet criteria for OCD, they were very unlikely to get better, leading top scientists to conclude, "high levels of overall mental illness comorbidity and severity, limited access to state-of-the-art treatments, or reduced responses to currently available OCD treatments, which have not been well tested in the African-American population, may all contribute to the high OCD persistence."
No tests to identify African-Americans with OCD
Mental health professionals and researchers often use special OCD tests to identify OCD symptoms in patients. However, research has shown that many of these tests are not valid for African-Americans. Some tests have indicated that African Americans who were actually normal, had problems like too much washing or checking. All researchers who develop tests are supposed to make sure the tests work properly for different ethnic groups, but this has not been done for African-Americans with OCD. Thus, aside from an in-depth (and expensive) interview with psychologist, we are not sure what the best way is to screen large numbers of black people for OCD.
African-Americans with OCD may be misdiagnosed
OCD symptoms are so varied that it is critically important to understand symptom differences in African-Americans. This is because patients who do not have the most common OCD symptoms (i.e. excessive washing and obvious repetitive checking) may not be quickly identified by mental health providers. There may be cultural differences in obsessive, compulsive, and anxiety symptoms. It is possible that African-Americans with the most severe form of the disorder, especially those with unusual obsessions or compulsions, may be misdiagnosed as psychotic. Cross-cultural research has found differences in the types of obsessions and compulsions in studies done internationally, but few such studies have been done with ethnic minorities in the US. It is very possible that misdiagnosis may account for the lack of identified African-American OCD patients.
New research on OCD in African-Americans urgently needed
There is a fundamental gap in our understanding of OCD in African-Americans.
It is urgently important that we identify and address barriers to diagnosis and treatment that are resulting in the ongoing suffering and disability of thousands of African-Americans with OCD.
Learn more about African-Americans with OCD at black.ocdproject.org.
Source: Himle JA, Muroff JR, Taylor RJ, Baser RE, Abelson JM, Hanna GL, Abelson JL, & Jackson JS. (2008). Obsessive-compulsive disorder among African Americans and blacks of Caribbean descent: results from the national survey of American life. Depress Anxiety.