From Reactive to Proactive: Building Longitudinal Care Plans That Actually Work for Hidradenitis Suppurativa

Hidradenitis suppurativa (HS) is a chronic, inflammatory disease that is characterized by recurrent and often unpredictable flares. In day-to-day clinical practice, visits are frequently focused on managing the most recent flare, adjusting treatments visit by visit, and hoping for stability in between. While this approach is often necessary in the moment, it can unintentionally keep care focused on reacting to disease activity rather than proactively managing the condition to shape better longer-term outcomes.

HS care does not have to remain episodic or crisis driven. Implementing a proactive, longitudinal approach can help anticipate disease behavior, align treatments with patient goals, and improve outcomes over time. Three core strategies can help shift care in this direction.

1. Design the treatment plan to include flares, not just the good days.

Proactive HS care starts with accepting the reality that although the goal is to minimize flares as much as possible, they can still happen. The goal is not to eliminate every flare, but to ensure that when flares occur, there is a clear, predefined plan in place.

Effective longitudinal plans include guidance for flare management. This may involve flare action plans, guidance on when to initiate specific therapies, and a framework for adjusting treatment intensity if flares become more frequent.

When patients have clarity on what to do at the first sign of worsening disease, flares can often be addressed earlier and more effectively. From a clinical perspective, this reduces last-minute urgent visits and allows care to proceed in a more controlled, intentional manner. Just as importantly, it alleviates the anxiety patients often carry around the uncertainty of flares, giving them greater agency over their condition.

2. Anchor care around goals, not just lesions.

HS severity is not fully captured by lesion counts alone. Pain, drainage, functional limitation, odor, and quality of life often matter far more to patients than the number of nodules present on examination.

Proactive care requires shifting the clinical lens toward patient-centered goals. For one patient, the priority may be reducing pain enough to work consistently. For another, it may be minimizing drainage or addressing residual scarring. Discussing these goals helps ensure treatment intensity is aligned with patient priorities and strengthens the therapeutic partnership between patients and their dermatologists.

When patients understand how each aspect of the treatment plan connects to what matters most to them, adherence and satisfaction improve. These goals also provide a stable reference point when treatment adjustments are needed, guiding decisions beyond short-term disease fluctuations.

3. Manage HS as a longitudinal, iterative process.

HS is a multifactorial disease with significant variability in presentation and treatment response. No single therapy works the same way for every patient, and many will require ongoing refinement of their care plan over time.

Setting expectations early is critical. Patients benefit from understanding that HS management is an ongoing, iterative process rather than a linear path with a fixed endpoint. This framing normalizes treatment adjustments and reinforces that changes in therapy reflect active disease management, not failure. Longitudinal care involves monitoring what works, identifying what does not, and adjusting the plan accordingly. Ongoing partnership between the patient and dermatologist is essential to achieving and maintaining long-term disease control.

While reactive care can improve immediate symptoms, chronic conditions such as HS benefit most from intentional, forward-looking treatment plans. A proactive approach empowers both patients and dermatologists to reclaim control over the disease course rather than responding to it one flare at a time.

HS will always require vigilance, but with the right structure in place, it does not have to be managed in crisis mode. Thoughtful care plans allow dermatologists to do what they do best: guide patients through complex disease with strategy, expertise, and partnership over time.

Dr Ghias is the co-founder and chief medical officer at Tono Health in Brooklyn, NY. Disclosure: The author reports no relevant financial relationships.

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