Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project.

BACKGROUND: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. OBJECTIVE: To evaluate unmet needs from the perspective of HS patients. METHODS: Prospective multinational survey of patients between October 2017 and July 2018. RESULTS: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. LIMITATIONS: Data were self-reported. Patients with more severe disease may have been selected. CONCLUSION: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.

Hidradenitis Suppurativa Is Associated with Polycystic Ovary Syndrome: A Population-Based Analysis in the United States.

Polycystic ovary syndrome (PCOS) has been linked to hidradenitis suppurativa (HS). However, evidence establishing a relationship between the two conditions is limited. We sought to determine the prevalence of PCOS among patients with HS and the strength of the association. We performed a cross-sectional analysis involving 22,990 patients with HS using clinical data from a multihealth system analytics platform comprising more than 55 million unique patients across all census regions of the United States. The prevalence of PCOS among patients with HS was 9.0%, compared with 2.9% in patients without HS (P < 0.0001). The likelihood of patients with HS having PCOS was 2.14 (95% confidence interval 2.04-2.24) times that of patients without HS, and PCOS was associated with HS across all subgroups. The strength of the HS association with PCOS was similar to that of diabetes mellitus (odds ratio 2.88, 95% confidence interval 2.83-2.93) and obesity (odds ratio 3.93, 95% confidence interval 3.87-3.99) with PCOS. The influence of disease severity on the strength of association with PCOS could not be assessed, nor could an HS phenotype for patients also having PCOS. This analysis could not establish directionality of relationship, nor causal link. In conclusion, PCOS is associated with HS, and patients with HS who have symptoms or signs of androgen excess should be screened for PCOS.

A Large Skin Cancer Screening Quality Initiative: Description and First-Year Outcomes.

IMPORTANCE: The lack of prospective randomized clinical trials demonstrating that full-body skin examination (FBSE) reduces melanoma morbidity or mortality has prompted an "I" rating from the United States Preventive Services Task Force for population-based skin cancer screening. More data on these screening programs are needed. OBJECTIVES: To describe a skin cancer screening quality initiative in a large health care system and to determine if the intervention was associated with screening of a demographically higher-risk population than previous screening programs and if melanoma incidence and thickness differed in screened vs unscreened patients. DESIGN, SETTING, AND PARTICIPANTS: This observational evaluation of a prospectively implemented quality initiative was conducted in a large health care system in western Pennsylvania (University of Pittsburgh Medical Center, UPMC) among adults seen in an office visit by a UPMC-employed primary care physician (PCP) in 2014. INTERVENTIONS: Implementation of a campaign promoting annual skin cancer screening by FBSE, including training of PCPs, promotion of the initiative to physicians and patients, and modification of the electronic health record (EHR) to include FBSE as a recommended preventive service for patients 35 years or older. MAIN OUTCOMES AND MEASURES: Characteristics of screened and unscreened patients and melanomas detected among them. RESULTS: Of 333 735 adult patients seen in an office visit by PCPs in 2014, 53 196 patients (15.9% of the screen-eligible population) received an FBSE, and 280 539 did not. Screened patients were slightly older (median age, 60 vs 57 years; P < .001) but did not differ significantly by sex (43.2% vs 43.1% men; P = .49) from the unscreened population. Fifty melanomas were diagnosed in screened patients and 104 melanomas were diagnosed in unscreened patients. Screened patients were more likely than unscreened patients to be diagnosed with melanoma (adjusted risk ratio [RR], 2.4; 95% CI, 1.7-3.4; P < .001) and to have a thinner invasive melanoma (median thickness, 0.37 mm vs 0.65 mm; P < .001). The incidence of melanoma lesions 1 mm or thicker was similar in screened vs unscreened patients (adjusted RR, 0.7; 95% CI, 02.-2.2; P = .52). CONCLUSIONS AND RELEVANCE: Large-scale screening for melanoma within a United States health care system is feasible and can result in increased detection of thinner melanomas. This intervention also resulted in screening of a higher proportion of men and an older patient population than previous screening interventions in which younger individuals and women predominated.