Seven Years to a Name: A Narrative Review of Delayed Recognition of Hidradenitis Suppurativa and the Cost of the Diagnostic Journey to Patients
DOI:
https://doi.org/10.5281/zenodo.22236477Keywords:
Hidradenitis Suppurativa, Diagnostic Delay, Primary Care, Misdiagnosis, Quality of LifeAbstract
Hidradenitis suppurativa is painful, visible, and diagnosed on history and examination without a single laboratory test. It also
takes the better part of a decade to name. The gap between how easy the diagnosis is and how long it takes is the subject of this
review.
Objectives: To review the published evidence on diagnostic delay in hidradenitis suppurativa: how long it lasts, where in the
pathway the time is lost, what it costs the patient, and whether it has improved.
Material and Methods: Narrative review of international surveys, national cohorts, guideline documents, randomised trials of
systemic therapy and qualitative studies indexed in PubMed and the major dermatology journals. No new patient data were
generated; every estimate quoted is one published by the original investigators.
Results: In a survey of 517 patients with hidradenitis suppurativa and 516 with psoriasis across 24 countries, mean delay from
first physician visit to diagnosis was 7.2 years against 1.6 years for psoriasis, and mean delay from symptom onset to first visit
was 2.3 against 1.0 years. A delay of more than two years was reported by 73.3 per cent of patients with hidradenitis suppurativa
against 26.7 per cent with psoriasis. Later national cohorts reported delays of 8.4 years in France, 10.0 in Germany and 10.1 in
Portugal.
Conclusion: Roughly three quarters of the delay occurs after the patient has already presented to a doctor, which locates the
problem in recognition rather than in help-seeking. Studies published across nearly two decades show no improvement, and the
delay matters more now than it did, because effective systemic treatment exists and irreversible scarring accumulates while the
diagnosis is missed.
Abbreviations: HS – Hidradenitis Suppurativa, DLQI – Dermatology Life Quality Index, IHS4 – International Hidradenitis
Suppurativa Severity Score System, TNF – Tumour Necrosis Factor, IL – Interleukin, GP – General Practitioner.
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