Comprehensive approach to managing hidradenitis suppurativa patients

Introduction

Hidradenitis suppurativa (HS) is a devastating disease that imparts enormous health-related quality of life (QoL) impairment.¹ A recent retrospective analysis of a heterogeneous population-based patient sample reported the U.S. prevalence of HS to be 0.1%.² However, under-reporting due to delayed access to care, under-recognition, misdiagnosis, and delayed diagnosis may falsely lower the true prevalence.

Delayed HS diagnosis and fragmented care lead to patient frustration and distrust of the healthcare system. HS patients also have increased utilization of high-cost settings, such as the emergency department and inpatient units.³ HS is a complex disease with multiple comorbidities⁴ and thus requires specialized and comprehensive care. The authors direct hidradenitis suppurativa specialty clinics at major US academic medical centers. Herein we propose strategies for a practicing dermatologist to optimize clinical encounters with HS patients, as well as for dermatologists interested in developing an HS specialty clinic (Fig. 1).

Figure 1.

Algorithm of interdisciplinary network for management of HS patients. *ED, Emergency Department; OB-GYN, obstetrics and gynecology; PCP, primary care provider. *Of note, this is a representation of a patient circuit for illustrative purposes, however, there may be other providers involved in the patient’s care

Educate front-line providers in HS diagnosis and management

In one Italian study, it was noted that 40–70% of HS patients first present to general practitioners,⁵ and a recent multicenter international study found that primary care providers were reported to have made the diagnosis of HS in 20.4% of patients.³ This highlights the importance of educating front-line providers about HS patients to minimize delay in diagnosis and to encourage early referral to a dermatologist to avoid a delay in care. Establishing a strong channel of communication between dermatology and front-line providers is essential to assuring that the patient is receiving appropriate care, especially given the multiple comorbidities associated with HS.

Starting an HS specialty clinic and implementing rotations for medical students and residents (in both dermatology and related nondermatologic specialties) can help to educate the next generation of providers about HS early in their careers. Giving lectures on HS to other specialties will also help to facilitate learning about this disease. Table 1 provides a summary of recommendations for approaching HS patients that we hope will also be helpful to dermatologists who plan to start an HS specialty clinic.

Table 1.

Summary of strategies and recommendations

Strategy	Practical recommendations
Educate front-line providers in HS diagnosis and management	• Establish strong channel of communication with PCPs • Give lectures to other specialties on the signs and symptoms of HS • Start an HS specialty clinic and implement medical student and resident rotations
Establish therapeutic alliance with patients	• Listen to each patient’s story and provide individualized care • Routinely assess patients’ pain level and treat accordingly • Encourage patients to start a symptom diary and bring it with them to clinic visits • Provide information about patient assistance programs for medications and affordable wound care dressings • Wait to discuss weight loss and smoking cessation until after establishing a therapeutic alliance • Create and facilitate virtual or local HS support groups
Provide specialized, evidence-based, comprehensive care	• Build a multidisciplinary network of providers (e.g. plastic surgeons, OB-GYNs, GI, urologists, rheumatologists, mental health specialists, etc.) for HS management • Train staff to perform wound care in clinic and educate patients on home wound care • Allow adequate clinic time to see new HS patients • Partner with an infusion clinic to assist with IV medications • Partner with a pharmacist liaison to facilitate drug approval and dispensing • Provide early referral to nutritionist for dietary modifications or to bariatric surgery for weight reduction if indicated • Discuss smoking cessation and provide resources • Screen for depression, anxiety, and suicidality; consider referral to mental health counselor • Stay up-to-date on new therapeutics and ongoing clinical trials for HS

ED, emergency department; GI, gastroenterologists; HS, hidradenitis suppurativa; IV, intravenous; MA, medical assistant; OB-GYN, obstetricians and gynecologists; PCPs, primary care providers.

Establish therapeutic alliance with patients

Difficulty in obtaining a diagnosis and finding a central provider to manage their disease negatively impacts the relationship between HS patients and the medical community. Distrust of the healthcare system may lead to lower treatment adherence. Devoting time and effort to establish rapport, inspire confidence, and deliver patient-centered care are all essential in the management of HS. Paying attention to special needs that affect particular vulnerable patient populations – such as children, pregnant women, underrepresented minorities, and low socioeconomic status – will help these patients feel validated. Providing information about patient assistance programs and alternative affordable dressings can signal a commitment to formulating an achievable and sustainable treatment plan for low-resource patients.

The emotional impact of HS should not be overlooked. Consider creating and moderating a virtual or local HS support group to offer continued support for patients outside of the clinic setting. Routinely assessing pain level at clinic visits and acknowledging suffering also builds rapport and trust. For HS pain that is not alleviated by standard treatments, consider partnering with pain management or physical therapy, and maintain an open mind regarding nonconventional approaches to pain (such as with cannabis or acupuncture). Encouraging patients to keep a symptom diary to track disease triggers and treatment adherence can allow patients to feel more involved in their care plan.

Waiting to discuss sensitive topics such as weight loss and smoking cessation until a therapeutic alliance has been established can allow for the well-intentioned message to be better received. Most importantly, listening to each patient’s HS journey story will allow providers to work together with patients to create an optimized individualized care plan.

Provide specialized, evidence-based, comprehensive care

Given the numerous comorbidities associated with HS, including obesity, polycystic ovarian syndrome, Crohn’s disease, arthritis, anxiety, and depression,^1,6 it is essential to establish a network of physicians across different specialties to participate in HS care. Depending on the patient’s symptoms and comorbidities, the care team may include plastic surgeons, gynecologists, urologists, gastroenterologists, rheumatologists, infectious disease specialists, endocrinologists, and psychiatrists. Eliciting feedback from patients regarding their experience with other providers within their HS care team can help to shape and build a strong multidisciplinary network. Interdisciplinary meetings can provide a forum for discussion regarding barriers to HS management, as well as helpful strategies, that other specialties have encountered while providing care to HS patients.

Chiricozzi et al. proposed the development of HS-dedicated multidisciplinary units with four core providers: a dermatologist, plastic or general surgeon, radiologist or expert in ultrasound, and nurse/wound care specialist, and a supporting panel of consultants.⁶ We agree that proper wound care is paramount in HS management. A dedicated wound care nurse or medical assistant can help dress patients’ wounds after the clinic visit and also provide wound care education to patients to empower them to engage in self-management at home. Alavi et al. has published an HS wound care and dressing algorithm that can aid providers in choosing an optimal wound care regimen for patients.⁷ If wound care is not readily available, prompt referral to a trusted wound care specialist or an established nearby HS specialty center can help reduce delays in care.

Additional recommendations in improving care delivery include working closely with auxiliary staff, pharmacists, and nutritionists, providing patients with resources for smoking cessation and mental health support, and staying up-to-date on medical management strategies and procedures. Having staff assist the patient to remove bandages prior to the start of the clinic visit is helpful. Appropriate front desk staff education can ensure adequate time in the clinic schedule to counsel new HS patients and enable urgent dermatology office visits for established HS patients experiencing acute flares and thus minimize emergency department and hospital visits. Partnering with an infusion center will help patients access medications like infliximab and ertapenem or, alternatively, enlisting the aid of rheumatology and infectious disease colleagues to help patients obtain treatments. Furthermore, having a pharmacist liaison may assist with prescription approval and dispensing.

Nonpharmacologic modalities of treatment are also essential in HS management.⁵ Partnering with a nutritionist can assist in providing dietary recommendations. In addition, for patients who are morbidly obese, discussing early referral for bariatric surgery if the patient is an appropriate surgical candidate may provide overall health benefits beyond improving their HS disease. Tobacco exposure is associated with HS severity,^1,5 so it is useful to have a list of resources for smoking cessation readily available in the clinic. Given reports of increased prevalence of depression and anxiety among this population,¹ it is also critical to screen patients for depression and anxiety and refer to a mental health specialist as needed.

Finally, proper care of HS patients requires knowledge of both existing and new medical management strategies. Ability to perform outpatient office-based HS procedures is a key asset. We recommend considering shadowing a provider who specializes in outpatient office-based HS surgeries, such as deroofing. Awareness of ongoing enrolling clinical trials (www.clinicaltrials.gov) and location of trial sites has the potential to greatly benefit patients with severe, recalcitrant disease.

Conclusion

HS patients often suffer significant impairments to their QoL, which can be exacerbated by misdiagnosis, delays in treatment, and inadequate management. Each patient deserves quality, personalized care that is comprehensive, compassionate, and up-to-date. We sought to provide a practical discourse on considerations for optimizing care for HS patients, including recommendations that can be a catalyst in the development of specialty HS clinics.