FormalPara Key Summary Points

Hidradenitis suppurativa is a complex chronic relapsing condition afflicting 1–4% globally with higher prevalence in women and Black populations.

Stigmas relating to physical appearance and limited availability of expert dermatology professionals impact patient engagement and disease management.

The availability of new medications for the disease and its comorbidities coupled with personalized digital support tools offer promise for improved intervention and outcomes.

Introduction

Hidradenitis suppurativa (HS; sometimes referred to as acne inversa or Verneuil’s disease) is a chronic relapsing inflammatory condition anchored in the hair follicle wherein painful abscesses, nodules, and tunnels form under the skin with the potential for intermittent pus drainage and tissue scarring [1]. Current estimates of incidence are 1–4% globally with the disease three times more prevalent in women and higher rates among Black populations [2]. The physical manifestations of the disease coupled with emotional stresses lead to elevated levels of depression and anxiety among patients [3]. Stigmatization is often reported as a consequence of myriad factors ranging from societal pressures regarding physical appearance to the actual name of the disease [4,5,6]. Additionally, both prospective and diagnosed patients often record negative experiences from their encounters with healthcare professionals (HCPs) where heightened focus on the causal factors for HS flares (smoking and body mass index [BMI]) and perceived insensitive counselling negatively impacts their care [7,8,9,10]. Delays in formal diagnosis have been estimated at 7–10 years on average [3]. Delayed diagnosis, underdiagnosis, and patient stigma currently present a critical unmet need in their healthcare. The high incidence of HS alone justifies fresh approaches, but when coupled with the opportunity to also engage patients to help reduce BMI and nicotine use it represents a glaring opportunity. Fortunately, silver linings are emerging for patients. New classes of drugs are becoming available to effectively control HS [11], obesity [12], and nicotine addiction [13], and digital tools and communities are emerging to provide personalized, empathic, and culturally sensitive patient supports that have shown effectiveness for patients suffering from illnesses ranging from depression and anxiety to obesity and addiction [14]. We advocate that a combination of physician-led therapeutic management augmented by digital adjuvants can provide the ideal support for patients with HS and their associated comorbidities.

This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors.

Commentary

Reported outcomes of patients with HS and their experiences with HCPs reveal high levels of anxiety and frustration experienced [4,5,6]. Given societal trends and pressures where physical appearance is continually under scrutiny, many patients with HS resort to self-isolation during painful flares. Compounding this, the medical community intended to serve patients is also actively attuned to the global campaigns to reduce obesity and smoking rates among individuals [15]. Collectively, this presents barriers to patients with HS, who fear prejudices among health workers and as a result often disengage from managed care [4]. In an effort to find the continual, personal, empathic, and sensitive support they desire, many have enrolled in social media support groups such as Facebook [7, 16]. Groups of this nature have demonstrated improved outcomes in other disease categories and represent a critical nexus to keep patients engaged. Moreover, for many diseases (notably depression [17], obesity [18], and addiction [19]) such digital supports have evolved into sophisticated smartphone-based interactive tools, with apps rooted in behavioral psychology which incorporate learned actions at a personal level. The potential for patients with HS is obvious and has already resulted in development of a ChatBot product for diagnosis [20]. Given the potential impact of ChatGPT (generative pre-trained transformer) in medicine, it seems likely that personal inroads might be made for HS symptom management and emotional support. Some of the criticisms reported by patients include HCP non-verbal cues and lack of attention to their disease symptoms but there is clear potential for AI (artificial intelligence)-based systems to address this [4,5,6]. The use of GPT-based platforms for diabetes [21, 22], dermatology [23], smoking cessation [24], and depression [25] have been reported and it seems likely an appropriate variant can be developed for the HS community.

Designing a “Triple Win” Approach

An attractive proposition could lie in a digital tool which supports patients with HS not only in symptom management but also associated conditions (namely HS, obesity, and nicotine addiction; Fig. 2). While there is evident potential for digital support and pre-diagnostic tools for use as adjuvants for patients with HS, designing such systems must be approached thoughtfully in partnership with patients, advocate groups, and healthcare professionals in order for it be integrated into managed care. To be effective it must be recognized that flare management of HS has interdependencies with obesity and nicotine dependence for a high percentage of patients and these alone represent very challenging conditions to manage. However, even incremental steps on either can have positive benefit on HS symptoms. Data suggests that marked improvements in HS symptoms are achieved with weight loss of 15% [26]; and in the case of smokers, more than 90% of patients with HS are current or former smokers and improved long-term prognosis is observed for those who manage to reduce or quit [27]. But giving up smoking requires support and empathy. Given that HS is an inflammatory disease, the link to the inflammation–obesity “vicious cycle” is also relevant (Fig. 1) which identifies cortisol release (a stress hormone) as a marker which elevates at a rate of approximately 10% per 2.5-point increase in patient BMI [28]. This cycle may explain the impact of stress and anxiety on comorbidities including depression where cortisol is a known causative factor [29]. Critical linkages between HS, obesity, and nicotine addiction likely also have behavioral dimensions, and successful interventions on one are likely to exert impact on the other two (Fig. 2). Although therapeutics are now becoming available for all three conditions, for long-term lasting benefit it is reasoned that behavioral change must also be effected. In totality, patients with HS face considerable burdens and any interventions need to be rooted firmly through patient-driven engagements and mindful of psychological schemas. One possible approach could be driven by behavioral psychology based on the Fogg model, which is rooted in the need for carefully designed and timed prompts in order to overcome activation thresholds [30]. This approach, which might realistically be achieved by a digital support companion, is consistent with the so-called flow theory wherein an experience is rendered so enjoyable that people continue even in the face of challenges [31]. Thus, in order to make any progress at a “triple win” strategy, patient-friendly prompts and nudges will need to be crafted and staged. In order to gain insight into such, we convened a number of ideation sessions with patients and treating physicians. On the basis of this feedback, we suggest at a minimum the following features be explored for inclusion in any digital support companion:

  • On-demand counselling

  • Bidirectional video communication

  • Educational tools

    • Situational advice

    • Seasonal/lifestyle support

    • Support for spouse/partner

  • HCP–patient dialog tool

  • Anamnesis charting

  • Chat group functions

  • Self-help groups

  • Digital patient passports

  • Wound care guidance

  • Pain management

Fig. 1
figure 1

The inflammation–obesity cycle

Full size image
Fig. 2
figure 2

The benefits of a “triple win” approach to HS comorbidities. HS Hidradenitis suppurativa

Full size image

Emergent theories on the positive impact of interpersonal gratitude on disease management have been demonstrated and could also be a central feature of digital adjuvants [32]. The medical community has recognized the need for new approaches to HS care [33], even referencing the psychosocial implications in comparison with patients under treatment for related dermatologic conditions and calling for government interventions [34]. The functioning of such a digital support tool could be based on a consumer smartphone. In addition to routine two-way communication of data, messages, educational materials, and social media exchanges, there is potential to utilize some of the sophisticated sensor technology embedded in such devices. For example, the front and rear cameras offer image and video capture in excess of 10 MP, which offers potential for medical-grade imaging of tissue [35]. These images could be used to accelerate diagnostic, prognostic, and drug efficacy evaluation, and allow best practice for wound care and management to be shared among users in a group or with HCPs. Clearly any such use would need to be strictly governed by appropriate firewalls and data privacy laws [36], but if adequately provisioned, such features could be a boon to both patient and provider. The effectiveness of smartphone-based cameras and associated machine learning/AI platforms for skin imaging is improving dramatically [37], and it is easy to see how such might integrate into standard care. Likewise the microphones on modern devices, in combination with sophisticated algorithms, have the capability to interrogate speech and acoustic signals to provide information on breathing rate and a host of other health-related phenomena including mood, fatigue, and even aspects of cognitive function [38]. Collectively, these device-based signals could provide meaningful and powerful supports to a patient, their care providers, and personal network.

Finally, in support of the “triple win” approach, new therapeutics to directly tackle obesity are entering the market, with notable outcomes and which might in concert with HS drugs provide momentum to lower the activation threshold for patients [12]. Also in support of the need to destigmatize obesity, many states in the USA have enacted legislation designating it as a protected class [39]. A benefit of such is that healthcare provision cannot be denied to those individuals which may have positive benefit for patients with obesity and HS who have experienced negative interactions with their providers. There is also progress in the development of pharmacologic treatments for smoking cessation [13] and the potential for the new (glucagon-like peptide 1 [GLP-1] class) anti-obesity agents to attenuate nicotine cravings is being actively investigated [40]. It is thus conceivable that in the near future, patients will have access to dual and triple cocktail therapeutics for optimal disease control and its comorbidities. The digital support approach theorized herein might then play an assistive role in the patient journey by augmenting traditional (episodic) HCP care with on-demand (continual) patient engagement and monitoring.

Conclusion

New therapeutic options are emerging and digital solutions are appearing to help pre-diagnose patients with HS and to treat HS and its comorbidities. There is an opportunity to revolutionize HS care and reduce patient stigma. Sophisticated digital support companions, which have proven beneficial in related conditions, are advocated to augment HCP-based care and coach patients into improved health outcomes. Such tools have the potential to increase patient engagement in self-care, and capture potentially valuable data which can assist HCPs in providing optimal clinical interventions.