Ongoing inflammation, patinet's impact, frequent flare-ups.

Recognizing persistent burden in hidradenitis suppurativa: why early diagnosis and ongoing reassessment matter in HS care
Hidradenitis suppurativa (HS) is a chronic, relapsing inflammatory disease characterized by painful nodules, abscesses, and draining tunnels affecting intertriginous areas such as the axillae, groin, and inframammary regions. Symptoms often begin in early adulthood and can persist for decades. Despite advances in understanding HS, many patients continue to experience recurrent flares, pain, malodor, drainage, and progressive scarring that substantially affect quality of life, work productivity, and psychosocial well-being.

Delayed diagnosis remains a major contributor to this burden. Patients often experience delays of several years before receiving an accurate diagnosis, frequently consulting multiple specialists and receiving alternative diagnoses such as furunculosis, cellulitis, or sexually transmitted infections. This prolonged diagnostic journey may contribute to fragmented care and delays in appropriate management. Survey data also highlight persistent knowledge gaps among non-dermatology clinicians, particularly in recognizing early or atypical presentations of HS.

Even after diagnosis, disease activity may persist or fluctuate. Signs that may suggest ongoing or uncontrolled HS include recurrent flares with new nodules or abscesses, progression of draining tunnels and scarring, persistent pain or odor, and continued impairment in patient-reported outcomes such as the Dermatology Life Quality Index (DLQI) or the Hidradenitis Suppurativa Quality of Life score (HiSQOL), even when visible disease appears stable.

Recognizing HS relies on 3 key clinical criteria: typical lesions (nodules, abscesses, draining tunnels), characteristic locations (axillae, groin, inframammary regions), and a chronic or recurrent disease course (eg, ≥2 flares within 6 months). Periodic reassessment using clinical signs, flare frequency, and patient-reported outcomes may help identify patients who could benefit from adjustments in management.

How do you recognize persistent or uncontrolled HS in your patients? What clinical signs or patient-reported outcomes prompt you to reassess and adjust management in these patients?

The patient's emotional response to this chronic, relapsing condition is the clue to reassessing and adjusting management. HS causes significant discomfort, embarrassment, and need for frequent doctor appointments

HS is chronic disease process and delay in seeking care and misdiagnosis (acne,folliculitis ) is common and by the time usually gets appropriate attention it is already quite progressed since it mostly affects the intertriginous areas it has profound effect on the QOL and even minor disease severity can have profound implication so I take that in consideration in evaluating uncontrolled HS in addition to ofcourse the nodules abscesses and sinus tracts and be as aggressive possible with the newer modalities of treatment

Frequent flare-ups, secondary infections, that causes scarring, pain with lesions and swelling that can last for weeks.

abscesses in the axilla and groin most often and lesions that frequently return despite appropriate therapy, scarring from multiple I&D's as well as larger pore size are also common in these individuals plus lesions showing in other more common places (average person) i.e. face and pilonidal

Physical exam will show inflamed, tender, sometimes draining nodules in the groin or axilla, and there is often scarring, enlarged pores, and post-inflammatory pigmentary changes that gives evidence of the chronicity of the condition.

Usually persistent or uncontrolled HS is determined by screening tools such as IHS4. Also ongoing evaluations with the patient themselves. Clinically we see persistent inflammation, ongoing patient complaints, and progression.

The tool I use the most is the IHS4 (International Hidradenitis Suppurativa Severity Score System) Although, one must still recognize this disease in order to use the tool. Recurrent symptoms and severity of flares makes me re-adjust my strategy

Uncontrolled HS is defined less by static severity and more by trajectory and burden:
• Persistent inflammation
• Frequent flares
• Structural progression
• Ongoing patient impact

continued flares despite conservative therapy with topicals, oral antibiotics, hormonal treatment