Dermatologic disorders

Survey Indicates Lack of Awareness of Hidradenitis Suppurativa Among Health Care Providers

According to results from the results of a recent survey, a lack of disease awareness contributes to misdiagnoses, frequent healthcare visits, and increased risk of depression in patients living with hidradenitis suppurativa (HS).

Scarred for Life: A National Report of the Patient Experience Living with Hidradenitis Suppurativa, conducted by the Canadian Skin Patient Alliance, included data from 167 individuals (71.1% from the US, 29.9% from Canada), 95.8% of which were women of an average age of 36 years.

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Among the results:

  • The median path of diagnosis in patients from Canada (n=49) was 9 years, and the average age of diagnosis was 32 years.
  • The majority of Canadian patients visited 1 to 3 different dermatologists, and half visited the emergency room. Seventy-nine percent of patients made at least 4 visits to a family physician.
  • Diagnosis was most commonly made by a dermatologist (55%) or family physician (22%).
  • Over 50% indicated the need for assistance with the management of secondary symptoms of HS, including depression, anxiety, and stress.
  • More than 60% indicated a lack of disease awareness among health care providers.
  • Less than 20% indicated that their pain was very well-controlled.

The authors of the survey recommended the evaluation of HS patients for depression, integrating pain management discussion into interactions with HS patients, and the development of a coordinated multi0-disciplinary approach for the management of HS as ways to improve support of these patients.

—Michael Potts


Scarred for life: a national report of the patient experience living with hidradenitis suppurativa. Canadian Skin Patient Alliance.