Work impairment in a woman with severe hidradenitis suppurativa after delayed diagnosis: A call for action.

Dear Editor,

We report on a 33-year-old female patient who presented with a 25-year history of hidradenitis suppurativa (HS). Severe inflammatory lesions and scarring covered her buttocks and axillae, with over 62 deep nodules (Fig. 1). Seven years passed before a diagnosis of HS was confirmed. During this delay, her condition worsened, resulting in her inability to work; the patient is now on the Ontario Disability Support Program. Her treatment plan included intravenous ertapenem for 6 weeks, followed by moxifloxacin, rifampicin, and metronidazole. She was counseled on weight loss, referred to a pain specialist, nutritionist, and psychotherapist, and now requires surgical consultation.

Fig. 1

Severe interconnected sinus tracts of the axilla, consistent with Hurley stage III.

HS is a chronic inflammatory condition with greater prevalence in women and characterized by the formation of nodules, abscesses, and sinus tracts in intertriginous regions, with accompanying pain, pruritis, and scarring (Garg et al., 2020). In our patient, the delayed diagnosis led to debilitating disease, and decreased quality of life and interference with work became devastating. Work absenteeism due to HS has been reported in 30% of working patients, accounting for up to 41.5% of their working time (Sandhu et al., 2020). Women today are leading change, and strives for earlier diagnoses are imperative to prevent more severe disease states that are detrimental to workplace empowerment for women.

Despite increased research over the past decade geared toward bringing awareness to HS, long diagnostic delays persist. In 2020, a multinational study including 27 institutions in 14 countries across four continents reported a mean HS diagnostic delay of 10.2 years (Garg et al., 2020). Similarly, Zimman et al. (2019) reported HS diagnostic delays of up to 11 years in 2019, with up to 21 health care visits prior to a diagnosis.

Diagnostic delays may stem from a reluctance to visit a general practitioner due to embarrassment caused by malodorous discharge and lesions in intimate regions and occasionally disappointment due to ineffective treatments (Clerc et al., 2019, Garg et al., 2020). Moreover, when symptoms are tolerable, patients are less likely to seek care (Clerc et al., 2019).

Furthermore, with no confirmatory diagnostic tests, HS is diagnosed clinically. However, due to its varying clinical presentations, HS is often mistaken as a simple infection, boil, or abscess (Garg et al., 2020). Garg et al. (2020) found that 63.7% of patients (n = 827) visited a physician ≥5 times before receiving a formal HS diagnosis. Misdiagnoses may also be attributable to limited HS exposure within the curriculum taught to training physicians. Clerc et al. (2019) report that only 32 general practitioners (16.9%) were taught about HS during their medical training.

To prevent hinderance of workplace empowerment for women and avoid invasive interventions, a timely diagnosis is essential. Therapeutic delay is associated with reduced clinical response; thus, recognizing a window of opportunity in treating patients with HS is important (Marzano et al., 2020). With an earlier diagnosis, our patient’s need for and extent of surgery would have been significantly reduced, with a better prognosis. Greater advocacy initiatives, continued research, and frequent word-of-mouth communications between practicing dermatologists, the public, and primary care physicians will be important if we hope to reduce diagnostic delays.

Conflict of Interest

None.

Funding

None.

Study Approval

The author(s) confirm that any aspect of the work covered in this manuscript that has involved human patients has been conducted with the ethical approval of all relevant bodies.

Financial Disclosures

Dr. Afsaneh Alavi has consulted for AbbVie, Janssen, LEO, Galderma, Novartis, Infla Rx, and Valeant; is an investigator for AbbVie, Novartis, Regeneron, Pfizer, Boehringer-Ingelheim, Glenmark, Merck Serono, Roche, Xoma, Infla Rx, UCB, and Xenon; and has received a grant from AbbVie.