Hidradenitis Suppurativa International Online Community: Patient Characteristics and a Novel Model of Treatment Effectiveness

Abstract

Treatment for hidradenitis suppurativa is diverse, yet frequently unsatisfactory. The aims of this study were to create a reproducible artificial intelligence-based patient-reported outcome platform for evaluation of the clinical characteristics and comorbidities of patients with hidradenitis suppurativa, and to use this to grade treatment effectiveness. A retrospective patient- reported outcome study was conducted, based on online questionnaires completed by English-speaking patients registered to the hidradenitis suppurativa StuffThatWorks® online community. Data collected included patient characteristics, comorbidities and treatment satisfaction. These were recoded into scalable labels using a combination of machine learning algorithm, manual coding and validation. A model of treatment effectiveness was generated. The cohort included 1,050 patients of mean ± standard deviation age 34.3 ± 10.3 years. Greater severity of hidradenitis suppurativa was associated with younger age at onset (p < 0.001) and male sex (p < 0.001). The most frequent comorbidities were depression (30%), anxiety (26.4%), and polycystic ovary syndrome (16.6%). Hurley stage I patients rated topical agents, dietary changes, turmeric, and pain relief measures more effective than tetracyclines. For Hurley stage II, adalimumab was rated most effective. For Hurley stage III, adalimumab, other biologic agents, systemic steroids, and surgical treatment were rated more effective than tetracyclines. Patients with hidradenitis suppurativa often have comorbid psychiatric and endocrine diseases. This model of treatment effectiveness provides a direct comparison of standard and complementary options.

Evaluating dietary considerations in hidradenitis suppurativa: a critical examination of existing knowledge

“…Interestingly, among Hurley I patients, dietary changes and turmeric (curcumin) were rated as more effective than tetracyclines for symptom management. Although turmeric's specific impact on HS patients has not been studied, it is known for its anti‐inflammatory properties and has demonstrated safety in six human trials 53,54 …”

“…Although turmeric's specific impact on HS patients has not been studied, it is known for its anti-inflammatory properties and has demonstrated safety in six human trials. 53,54 According to the survey, various beneficial dietary changes were reported, including a ketogenic diet, autoimmune protocol diet, sugar reduction or elimination, dairy reduction or elimination, carbohydrate reduction or elimination, nightshade reduction or elimination, gluten-free diet, chocolate avoidance, red meat reduction or elimination, unspecified dietary changes, weight loss and smoking cessation were cited as beneficial for symptom relief. Dairy emerged as the most likely food item to exacerbate HS symptoms.…”

Self‐reported treatment effectiveness for Crohn's disease using a novel crowdsourcing web‐based platform

“…The STW effectiveness model allows the comparison of many different treatments from many treatment types, raising benefits for both patients and health care professionals. A main limitation of the model is that when comparing the change in severity, a 1‐point improvement from a highly severe 5 to severe 4 level is counted the same as from moderate 3 to mild. 2 A certain diet, for example, could rank high, but rather suit patients with a milder disease.…”

“…StuffThatWorks (STW) (https://www.stuffthatworks.health) is an online platform for patients with chronic medical conditions that apply machine learning and utilizes the power of crowdsourcing 5 . The platform aims to help patients share their personal experiences by transforming these experiences into a structured knowledge database.…”

“…StuffThatWorks (STW) ( https://www.stuffthatworks.health ) is an online platform for patients with chronic medical conditions that apply machine learning and utilizes the power of crowdsourcing. 5 The platform aims to help patients share their personal experiences by transforming these experiences into a structured knowledge database. Research communities are created for each medical condition whereby patients can self‐educate themselves, ask other patients questions and find other patients with similar characteristics.…”