Topic 2: Diagnostic Delay Remains Common
Patients with HS often live with symptoms for years before receiving the correct diagnosis. In a 2024 retrospective study of 285 patients at a Portuguese referral center, the mean diagnostic delay was 10.1 years and did not improve when 2018–2022 was compared with 2006–2017.2
A 2024 real-world analysis across Europe and the United States identified misdiagnosis, delayed specialist referral, and patient embarrassment among factors contributing to diagnostic delay. Longer delay was associated with worse disease-related outcomes, although observational data cannot prove that delay alone caused every outcome.3
Why the diagnosis is missed
- HS may be labeled as recurrent boils, folliculitis, abscesses, or an infected cyst.
- Lesions may be absent, less inflamed, or already draining on the day of examination.
- Care may be fragmented across urgent care, primary care, emergency care, surgery, and gynecology.
- Patients may not volunteer symptoms involving the groin, buttocks, inframammary folds, or anogenital area.
- A single encounter may not reveal recurrence, bilaterality, multiple involved regions, or prior procedures.
- Weight stigma, smoking stigma, and embarrassment may discourage disclosure or contribute to symptoms being dismissed.
| Communication note: Smoking and higher body weight are associated with HS and may influence disease, but neither is required for diagnosis. Avoid framing HS as the patient’s fault or delaying appropriate treatment until behavior changes occur. |