Creation of a Registry to Address Knowledge Gaps in Hidradenitis Suppurativa and Pregnancy

Adelekun, Ademide; Micheletti, Robert G.; Hsiao, Jennifer L.

doi:10.1001/jamadermatol.2019.4162

Cited by 14 publications

(16 citation statements)

References 6 publications

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“…Currently, no standardized guidelines on the management of HS during pregnancy exist. To address this and other knowledge gaps, the National Hidradenitis Suppurativa Pregnancy Registry is being created, which will collect data on HS disease activity and management, including the use of biologic therapies during pregnancy as well as maternal and fetal outcomes 16 . This registry will supplement the Hidradenitis Suppurativa Prospective Observational Registry and Biospecimen Registry Project (HS PROGRESS) 17 .…”

Section: Pregnancy In Hs Patientsmentioning

confidence: 99%

The most recent advances in understanding and managing hidradenitis suppurativa

2020

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Hidradenitis suppurativa (HS) is a chronic, inflammatory, recurrent, and debilitating skin disease of the hair follicle unit that typically develops after puberty. HS has a significant negative impact on both the quality of life (QOL) of patients affected by this disease as well as family members and caregivers. However, the pathogenesis of HS is multifactorial and still remains to be fully elucidated, which makes the development of treatments difficult. The last 10 years have seen a surge in HS research, and many new findings have come to light, yet much more remains to be elucidated. Physicians must employ a multidisciplinary approach to maximally address all facets of HS. Clinical characteristics of the disease that differ between females and males as well as across different races and ethnic groups must be considered. Targeted topical, oral, and injectable therapies continue to be developed for HS as a greater understanding of the pathogenesis is reached. However, randomized controlled trials regarding dietary factors that may contribute to HS are needed to meet our patients’ growing concerns and questions about the role of diet in HS pathogenesis. Finally, improved outcome measures are needed to standardize HS severity and grading between physicians and clinical trials, and a more diverse representation of HS populations is needed in clinical trials.

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Section: Pregnancy In Hs Patientsmentioning

confidence: 99%

The most recent advances in understanding and managing hidradenitis suppurativa

2020

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“…Multidisciplinary collaboration is essential in the development of individualized treatment plans for women of childbearing age with HS. Prospective studies ( Adelekun et al, 2020 ) in women with HS are needed to further investigate the impact of delivery method on HS symptoms and improve dermatology and obstetrics/gynecology collaborative counseling of patients with HS regarding the optimal delivery method.…”

Section: Discussionmentioning

confidence: 99%

Menses, pregnancy, delivery, and menopause in hidradenitis suppurativa: A patient survey

Fernandez

Hendricks

Thompson

et al. 2020

International Journal of Women's Dermatology

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Background Hidradenitis suppurativa (HS) is a chronic inflammatory disorder that primarily affects women of childbearing age. There is a paucity of data on HS disease activity during menstruation, pregnancy, and menopause and the potential impact of HS on the method of delivery. Objective We aimed to characterize the natural history of HS symptoms during menses, pregnancy, and menopause. We also sought to evaluate the potential impact of HS on delivery method and whether there were delivery-related healing complications unique to women with HS. Methods An anonymous survey was distributed via social media to international HS support groups and patients at three HS specialty clinics in North America. Responses were collected from March to July 2019. Results A total of 279 respondents answered questions on disease changes during pregnancy. Menstruation caused worsening of HS symptoms in 76.7%, no change in 22.2%, and improvement in 1.1%. During pregnancy, the distribution between symptoms worsening (34.8%), having no change (28.7%), and improving (36.6%) was relatively even. After menopause, participants typically reported either worsening (39.5%) or no change (44.2%) in HS symptoms. Among respondents with anogenital HS involvement who delivered vaginally, 3.1% believed that HS interfered with vaginal delivery (VD), and 23.5% believed that VD caused an HS flare. Cesarean section (C-section) delivery was reported by 44.2% of participants. Ten participants reported that they were advised by their doctor to have a C-section instead of a VD because of severe anogenital HS. Of those who underwent a C-section, 33.9% reported that HS interfered with incision healing, and 51.2% reported developing new HS lesions in their C-section scar. Conclusion To our knowledge, this is the first study describing the potential influence of HS on a patient’s method of delivery. Multidisciplinary collaboration plays a pivotal role in developing individualized treatment and birth plans for pregnant women with HS.

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“…Several investigations are warranted to move this field forward, including mechanistic studies regarding how reproductive hormones impact disease activity, prospective registries to evaluate the efficacy and safety of HS treatments during pregnancy and pregnancy outcomes in patients with HS ( Adelekun et al, 2020 ), implementation of effective targeted strategies to improve sexual function in women with HS, and longitudinal studies to explore the cumulative life course impairment that HS inflicts on patients. These studies would be part of a wider movement within the HS research community to understand the pathogenesis of the disease, expand the therapeutic armamentarium, and hopefully lead to the development of therapeutic and disease biomarkers in HS.…”

Section: Current Knowledge/management Gaps and Future Directionsmentioning

confidence: 99%

“…Hidradenitis suppurativa (HS) is a chronic skin disease with features of autoinflammation and autoimmunity, manifesting as painful nodules and abscesses, as well as malodorous, draining, epithelialized tunnels with a predilection for flexural areas of the skin. As a systemic inflammatory disorder, HS is associated with multiple comorbidities across organ systems, including inflammatory bowel disease, inflammatory arthropathy, as well as metabolic syndrome ( Adelekun et al, 2020 ). In North American and European epidemiologic studies, HS has been found to disproportionately affect women of childbearing age (Adelkun et al, 2021 ; Garg et al, 2021 ; Miller et al, 2016 ).…”

Section: Introductionmentioning

confidence: 99%

Clinical considerations in the management of hidradenitis suppurativa in women

Kozera

Lowes

Hsiao

et al. 2021

International Journal of Women's Dermatology

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Hidradenitis suppurativa (HS) is a chronic, inflammatory disease of the skin with a predilection for women. The role of sex hormones, including estrogen and progesterone, is incompletely understood, but alterations in hormone levels may play a role in disease activity for many patients. Specific clinical considerations should be made for women with HS, particularly in the setting of pregnancy, childbirth, breastfeeding, and menopause. Current knowledge gaps regarding HS include the cumulative impact of disease across an individual's lifespan, as well as the mechanistic role of sex hormones in the disease. An improved understanding of the pathophysiologic role of hormones in HS would optimize our ability to use targeted therapies for hormonally driven disease. Psychological and psychosexual support for women with HS is an important facet of any holistic management strategy for the disease. This article integrates up-to-date pathogenic and mechanistic insights with evidence-based clinical management to optimize care for women with HS.

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Creation of a Registry to Address Knowledge Gaps in Hidradenitis Suppurativa and Pregnancy

Abstract: Vossen ARJV, van Straalen KR, Prens EP, van der Zee HH. Menses and pregnancy affect symptoms in hidradenitis suppurativa: a cross-sectional study.

Cited by 14 publications

References 6 publications

The most recent advances in understanding and managing hidradenitis suppurativa

The most recent advances in understanding and managing hidradenitis suppurativa

Menses, pregnancy, delivery, and menopause in hidradenitis suppurativa: A patient survey

Clinical considerations in the management of hidradenitis suppurativa in women

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