OCD and Delayed Diagnosis

One of the most critical challenges faced by people with OCD is the delayed or incorrect diagnosis they often receive. Although epidemiological studies show that OCD is a relatively common neuropsychiatric disorder with a significant impact on the general population, the numbers do not fully reflect how many individuals remain undiagnosed, misdiagnosed, or without access to appropriate treatment.

What do studies show?

According to an earlier study (Hollander et al., 1997), conducted between 1994–1995 with a sample of about 700 individuals, participants were diagnosed with OCD an average of 16 years after the onset of their first symptoms. Since then, additional research has confirmed this significant delay between symptom onset and access to proper care. Key barriers include stigma, lack of understanding and recognition of the disorder, and limited awareness of effective treatment options (Garcia–Soriano et al., 2014).

In a more recent study by Hezel et al. (2022), conducted on a smaller sample of 165 adults with OCD aged 18 to 58, it was observed that the average time between the onset of initial symptoms and diagnosis has decreased to 11 years, down from 16 years two decades earlier. Although this reduction is considered encouraging, the time span remains particularly long and is associated with delayed initiation of treatment, which in turn negatively impacts the quality of life of both patients and their families.

Early onset, delayed diagnosis

A particularly interesting finding of the above study concerns the link between the onset of symptoms at a younger age and a more delayed diagnosis. Research data suggest that individuals whose symptoms appear earlier in life tend to wait longer before seeking treatment compared to those whose symptoms begin after childhood or adolescence. Although the exact reasons for this phenomenon are not entirely clear, Stengler et al. (2013) suggest that some early, atypical symptoms are either underestimated or mistakenly considered normal both by the individuals themselves and by family members, especially parents.

The need for awareness and education

These findings emphasize the urgent need for greater and ongoing awareness among parents, healthcare providers, and educators. Equally important is the continued training of mental health professionals, so that OCD is recognized early and treatment is not delayed. Early diagnosis not only improves access to effective treatment, but also has a profound impact on treatment outcomes and overall quality of life.

Sources:

García-Soriano, G., Rufer, M., Delsignore, A., & Weidt, S. (2014). Factors associated with non-treatment or delayed treatment seeking in OCD sufferers: A review of the literature. Psychiatry Research, 220(1-2), 1–10. https://doi.org/10.1016/j.psychres.2014.07.009

Hezel, D. M., Rose, S. V., & Simpson, H. B. (2022). Delay to diagnosis in OCD. Journal of Obsessive-Compulsive and Related Disorders, 32, 100709. https://doi.org/10.1016/j.jocrd.2022.100709

Hollander, E., Stein, D. J., Kwon, J. H., Rowland, C., Wong, C. M., Broatch, J., & Himelein, C. (1997). Psychosocial function and economic costs of obsessive-compulsive disorder. CNS Spectrums, 2(10), 16–25. https://doi.org/10.1017/S1092852900007239

Stengler, K., Olbrich, S., Heider, D., Dietrich, S., Riedel-Heller, S., & Jahn, I. (2013). Mental health treatment seeking among patients with OCD: Impact of age of onset. Social Psychiatry and Psychiatric Epidemiology, 48(5), 813–819. https://doi.org/10.1007/s00127-012-0584-2