Patients With HS Often Misdiagnosed, Have Poorly Controlled Disease
Patients with hidradenitis suppurativa (HS) undergo a variety of treatments, but pain is still poorly controlled and the disease is often misdiagnosed.
Researchers aimed to describe the patient experience of individuals with HS through creating the Hidradenitis Suppurativa Patient Experience survey. Experience information included their path to diagnosis, symptom control, treatments, health care utilization, patient needs, and impact on quality of life.
A total of 537 participants completed the survey. A mean of 15 treatment types were reported:
- Antibacterial soaps (93.3%, n=431)
- Avoidance of tight clothing (90.9%, n=419)
- Oral antibiotics (79.7%, n=368)
- Nonprescription drugs (79.7%, n=368)
- Topical antibiotics (77.1%, n=356)
Pain was poorly controlled in 46% of respondents, and HS had a negative impact on the ability to work and attend school for 81%. HS is often misdiagnosed, with a mean number of misdiagnoses per respondent being 3 and a median time to diagnosis of 10 years.
“Individuals with HS experience delay in diagnosis and have suboptimal control of the disease,” concluded the study authors. “We propose 11 recommendations to improve diagnosis, treatment, and quality of life for individuals living with HS,” they added.
Reference
Kashetsky N, Mukovozov IM, Pereira J, Manion R, Carter S, Alhusayen R. Patient experiences with hidradenitis suppurativa: the hidradenitis patient experience survey. Clin Exp Dermatol. Published online July 8, 2021. doi:10.1111/ced.14826
