The Future

Introduction

This chapter is our vision for the way forward from gaps to goals . We first summarize the major gaps that exist in order to provide optimal care for HS patients. We then outline the journey to address these gaps and the programs and initiatives required to do this ( Fig. 35.1 ).

Major Gaps to Address Now for Optimal Care of HS Patients in the Future

• 1.

  Delayed diagnosis and treatment may lead to uninhibited disease progression

  • It is unacceptable that there is a prolonged delay for most patients to be diagnosed with HS, on average, about a decade. It is critical that patients are diagnosed promptly so they may be treated much earlier in their disease course. As inflammation progresses, it causes irreversible tissue destruction and scarring in the region of disease activity. Given the relapsing and remitting nature of HS, a dynamic treatment plan is often needed to care for HS both during flares and periods of remission. Treatment goals are to improve quality of life, prevent permanent disfigurement, and reduce the need for visits to acute care settings. Another major gap is that it has not yet been definitively demonstrated that preventing HS from advancing will avert progression and scar formation. Early and proactive treatment has been shown in other destructive inflammatory diseases, including rheumatoid arthritis, to limit disease progression via the treat-to-target paradigm wherein treatment modalities are aggressively and proactively managed to maximize long-term health-related quality of life.

• 2.

  Suboptimal access to care impedes HS management

  • Patients deserve timely access to knowledgeable care and effective treatment that leads to disease remission. HS patients describe insufficient access to healthcare providers who are educated about HS, as well as geographical restrictions to HS providers. In terms of treatment limitations, there is only one FDA-approved treatment for HS; adalimumab (Humira, AbbVie) based on the PIONEER I and II studies. Patients in some states face challenges accessing this therapy. There are also issues with access to off-label and procedural therapies, as well as financial difficulties in obtaining wound care supplies. Disparities in access to care have been suggested in this disease that predominates in women and Blacks, and it is already documented that Blacks with HS experience significant healthcare disparities.

• 3.

  Limited understanding of HS clinical course, clinical phenotypes and disease burden prevents personalized medicine approaches

  • The ultimate goal of providing personalized treatment requires comprehensive knowledge of clinical course, clinical phenotypes, and disease burden. These features may hold important clues to predict disease prognosis and treatment response. Patients progressing along a given clinical course, as well as patients with different phenotypes, may respond to specific treatment approaches more positively than others. In addition, it is now appreciated that there are significant systemic co-morbidities associated with HS. Understanding these cardiometabolic, rheumatologic, oncologic, and psychological co-morbidities may also help tailor treatment for patients with HS.

• 4.

  Insufficient understanding of HS pathogenesis inhibits therapeutic development

  • The unique HS pathogenic signature is still not known; this has hindered the development of novel targeted therapies. Accelerated basic and translational research is imperative to rationally target dysregulated pathways and guide therapeutic development.

• 5.

  Paucity of novel therapeutics currently limits finding a permanent remission or a cure

  • There is a paucity of high-quality evidence for HS treatments. To address this deficit, carefully designed randomized controlled trials (RCTs) of novel targeted therapies are needed. While developing these HS clinical trial programs, special considerations include patient selection and recruitment, development of outcome measures, the role of placebo or active treatment comparators, and conduct of concomitant translational research for pathogenesis and biomarkers during the RCTs.

The Journey From Gaps to Goals

• 1.

  Clinician, patient, and public education

  • To improve time to diagnosis and treatment, education of clinicians, patients, and the general public is paramount. Increasing awareness of HS diagnostic criteria across medical specialties will reduce under-diagnosis, misdiagnosis, and diagnostic delay. Education programs for front-line providers who first encounter patients with HS symptoms and signs could reduce the time to diagnosis and dermatology referral. Another major goal is to educate clinicians as treatment paradigms are developed to induce early disease remission and prevent progression, such as treat-to-target approaches. In addition, increased awareness of the clinical signs and symptoms of HS in the general public could decrease the stigma associated with HS. Physicians can work with patient organizations to improve patient education.

  • Given the high disease burden and healthcare costs associated with HS, efforts should be made to improve both pharmacologic and nonpharmacologic treatment plans. An individualized written home-management action plan has shown efficacy in other chronic inflammatory conditions, such as asthma and atopic dermatitis. Patients are provided with written instructions on flare recognition and corresponding step-up/step-down treatment at home. This is highly applicable to HS, another chronic disease with intermittent flares. Providing HS patients with proper disease education and a written treatment action plan may empower them to manage acute HS flares at home as opposed to seeking care in an acute care setting.

• 2.

  Multi-specialty/interdisciplinary HS clinics

  • A key component of optimizing current HS management is developing specialized HS treatment centers and multi-specialty HS clinics anchored by the dermatologist, as discussed in Chapter 32 . Multi-specialty care can take different forms, including a multidisciplinary clinic with available specialists in one clinic, or referral to a network of specialists interested in and knowledgeable about HS. This comprehensive approach is modeled on the delivery of cancer care. First, those who provide direct care of HS lesions are essential, such as dermatologists, surgeons, nurses, and wound care specialists. Second, access to healthcare providers who care for those with comorbidities, as discussed in Chapter 8 , is also key. This includes assessment and treatment by pain specialists, psychologists, psychiatrists, rheumatologists, endocrinologists, cardiologists, primary care physicians, as well as counselors, dietitians, or nutritionists. Patient-led HS support groups established within a specialized HS treatment center can also provide a valuable resource for HS patients and their families, as discussed in Chapter 33 .

  • Caring for patients in the context of a multi-disciplinary setting can also improve our understanding of the most effective ways to integrate therapeutic approaches for HS management, including conventional medications, physical procedures such as surgery and lasers, and complementary and alternative medicine (CAM). An interdisciplinary approach can also facilitate the timely management of acute flares of HS. Developing multi-disciplinary HS clinical care in areas of higher HS prevalence can also help to reduce health disparities.

• 3.

  Clinical, epidemiology, and genetics studies

  • Personalized medicine requires knowledge of patient and disease characteristics that guide treatment selection, which can be gained by long-term studies of clinical course, and large-scale epidemiology and genetics studies of HS patients. Earlier chapters have outlined our current knowledge of these areas, but there is still much to be learned. Studies on the role of imaging modalities to facilitate diagnosis, lesion assessment, and treatment planning are also needed. In addition, skin and serum biomarkers may also be useful to guide treatment choice and develop predictors of response, and further investigation in this area of research is warranted.

• 4.

  Basic science and translational research

  • The current understanding of HS pathogenesis is described in earlier chapters. To expand and accelerate this knowledge, increased basic science and translational research are needed, such as in the fields of genetics, immunology, and the human microbiome. Increased funding for HS research is critical for these efforts.

• 5.

  Clinical trials for HS

  • Chapter 34 outlined the current pipeline of treatments for HS. To reach our ultimate goal of permanent remission and a cure for HS, greater numbers of clinical trials in all disease stages are needed. Guidance for optimizing clinical trials in HS can be developed in conjunction with physicians, industry partners, regulatory bodies as well as patients. Some key considerations include the design of RCTs and pragmatic clinical studies, choice of comparator arms, dosage regimens, development and implementation of outcomes measures, biomarker studies within clinical trials, and patient recruitment.