Global barriers to sexual health, pregnancy, and breastfeeding in hidradenitis suppurativa

Abstract

Background:

The impact of hidradenitis suppurativa (HS) on sexual health, pregnancy, and breastfeeding in female patients is understudied.

Objective:

To characterize the impact of HS on sexual health, barriers to breastfeeding, and barriers to accessing care for HS during breastfeeding and pregnancy.

Methods:

A cross-sectional survey of self-identified adult women with HS from June 13, 2021 to June 30, 2021 was performed to assess associations between demographic and clinical factors, including age, gender, race, and ethnicity, disease severity (patient global assessment), and difficulty accessing dermatologic care with the outcomes of sexual health-related quality of life, breastfeeding practices, and barriers to care.

Results:

Eight hundred eight eligible female respondents resided in 5 countries. Seventy-four point three percent self-identified as White, 8.3% Black, 2.4% Asian, 5.3% Hispanic, 7.1% Mixed race, and 1.4% Native Hawaiian or other Pacific Islander. Moderate to extreme difficulties with sexual activity and desire were associated with more difficulty accessing dermatologic care and higher patient global assessment scores (P < .01 for all). Depression and anxiety were associated with moderate to extreme difficulties with sexual activity (P < .01). Of the participants who were previously pregnant, 15% (n = 79/526) reported that HS interfered with breastfeeding ability. The top barrier to care was believing nothing could be done for HS during pregnancy and breastfeeding.

Limitations:

Diagnosis and disease severity were self-reported and could not be verified.

Conclusion:

Impaired sexual health was associated with access to care limitations, increased disease activity, and comorbid depression and anxiety. Our findings underscore the need for guidance on safe HS therapies during pregnancy and breastfeeding.

What is known about this subject in regard to women and their families?

• Hidradenitis suppurativa (HS) disproportionately affects women of childbearing age and significantly impacts quality of life, sexual health, and psychosocial well-being.

• Women with HS may experience disease-related challenges during pregnancy and breastfeeding, yet data on these specific impacts are limited.

• Barriers to care for women with HS include delayed diagnosis and a lack of provider awareness of safe and effective treatment options during pregnancy and lactation.

What is new from this article as messages for women and their families?

• This international survey of 808 women with HS demonstrates that sexual health concerns are associated with self-reported disease severity, difficulty accessing dermatologic care, and comorbid anxiety and depression.

• Participants who were pregnant or breastfeeding reported unique barriers to care, including uncertainty about safe HS treatments and challenges in finding knowledgeable providers.

• Addressing gaps in care related to sexual health, pregnancy, and breastfeeding is critical for improving the quality of HS care for women throughout their reproductive years.

Introduction

Hidradenitis suppurativa (HS) is a debilitating, chronic, inflammatory skin condition with major impacts on quality of life (QoL).^1–3 Women account for 74% of all HS cases in the United States, and the highest prevalence is observed during the reproductive years, specifically 18 to 49.⁴ Prior studies have reported high rates of sexual dysfunction in HS,⁵ as well as potential worsening of HS during pregnancy and postpartum. Women of childbearing potential are disproportionately affected by HS; however, there are limited data on the impact of HS severity or accessibility to HS care on sexual health, pregnancy, and breastfeeding. We sought to address this gap with a cross-sectional global survey study designed to characterize the impact of HS on sexual health, barriers to breastfeeding, and barriers to accessing care for HS during breastfeeding and pregnancy.

Materials and methods

Study design and population

We conducted a cross-sectional study of 1,040 surveyed participants from Facebook HS support groups who self-identified as having HS from June 13, 2021 to June 30, 2021. An anonymous volunteer sample was used for participant selection. Eligible participants were female, at least 18 years old, confirmed HS diagnosis by a provider or validated screening questions,⁶ and confirmed or denied a prior pregnancy. The survey included multiple-choice questions to evaluate the impact of HS on sexual health, pregnancy, and breastfeeding.

Surveys with less than 10% completion of the 35-question parent survey were removed from the analysis. The University of California, San Francisco Institutional Review Board (Protocol #19-27407) approved the survey, and participants provided informed consent. Complete methodologic details of the 35-item survey design, administration, and data preparation were previously reported.⁷ Facebook’s “Post Reach” metric,⁸ which estimates the number of individuals exposed to the post, was used to quantify the survey response rate of 20.1%. The study was designed, and all findings were reported following STrengthening the Reporting of OBservational studies in Epidemiology guidelines (Supplementary Table S1, https://links.lww.com/IJWD/A86).

Outcomes

The outcomes measured included sexual health-related QoL, breastfeeding practices, and barriers to care. Sexual health-related QoL was measured as a categorical variable adapted from 2 questions from the validated HiSQOL instrument¹: “In the past 7 days, how much has HS made sexual activity difficult?” and “In the past 7 days, how much has HS affected your desire for sexual activities?”

Statistical analysis

We used nonparametric summary statistics to report participant characteristics and outcomes. Two-sample Wilcoxon rank-sum, Fisher’s exact, and Pearson χ² tests were used to measure associations between exposure and outcome variables. All statistical analyses were conducted using Stata statistical software (version 17.0, StataCorp LLC, College Station, TX), with a significance threshold of P < .05.

Results

Participants

Of the 808 eligible female participants with representation across 5 continents (Supplementary Figure S1, https://links.lww.com/IJWD/A85), 74.3% self-identified as White, 8.3% Black, 2.4% Asian, 5.3% Hispanic, and 7.1% Mixed race. Most participants were employed full-time (54.5%). Most participants had private (49.1%) or public/government insurance (33.3%). Half of all participants (50.1%) primarily receive their HS-related care from a dermatologist, while 24.3% of participants received their HS care from a primary care provider, and 43.8% reported that access to dermatologic care was difficult or very difficult.

Approximately one-third of participants (35.5%) reported having severe or very severe disease via patient global assessment (PtGA). Anxiety (57.7%), depression (55.0%), obesity (52.4%), and polycystic ovarian syndrome (22.3%) were common (Table 1).

Table 1.

Study participant characteristics

Characteristic	Total (N = 808)
	N	(%)
Age (median, IQR)	36	(29, 43)
Disease duration (median, IQR)	18.4	(11, 25)
Not reported	24	(3.0)
Race and ethnicity (n, %)
Asian	19	(2.4)
Black	67	(8.3)
Hispanic	43	(5.3)
Mixed race	57	(7.1)
Native Hawaiian or other Pacific Islander	11	(1.4)
White	600	(74.3)
Unknown or declined to answer	11	(1.4)
Employment
Full time	440	(54.5)
Part time	84	(10.4)
Unemployed/disabled	129	(16.0)
Other	155	(19.2)
Insurance type
Private	397	(49.1)
Public/government	269	(33.3)
Other	32	(4.0)
None	110	(13.6)
Primary HS provider
Dermatologist	405	(50.1)
Primary care provider	196	(24.3)
Surgeon	30	(3.7)
Other	62	(7.7)
None	115	(14.2)
Access to dermatologic care
Very easy or easy	233	(28.8)
Neutral	220	(27.2)
Difficult	219	(27.1)
Very difficult	135	(16.7)
Self-reported Hurley stage
I	52	(6.4)
II	434	(53.7)
III	273	(33.8)
Unknown	49	(6.1)
Patient global assessment
None, minimal, or mild	110	(13.6)
Moderate	411	(50.9)
Severe	221	(27.4)
Very severe	66	(8.2)
Reported comorbidities
Anxiety	466	(57.7)
Depression	444	(55.0)
Infertility	68	(8.4)
Obesity	423	(52.4)
PCOS	180	(22.3)
Sexual dysfunction	23	(2.8)
Substance use	43	(5.3)
Referred to OB/GYN	90	(11.1)
Did you see OB/GYN for sexual health issues?	41/90	(45.6)
Has HS made sexual activity difficult?
Not at all	136	(16.8)
Slightly	115	(14.2)
Moderately	168	(20.8)
Very much	168	(20.8)
Extremely	203	(25.1)
Did not answer	18	(2.2)
Has HS affected your desire for sexual activities?
Not at all	75	(9.3)
Slightly	85	(10.5)
Moderately	129	(16.0)
Very much	156	(19.3)
Extremely	169	(20.9)
Unable to be sexually active due to my HS	87	(10.8)
Not sexually active	100	(12.4)
Did not answer	7	(0.9)

HS, hidradenitis suppurativa; IQR, interquartile range; OB/GYN, obstetrician/gynecologist; PCOS, polycystic ovarian syndrome.

Sexual health

A total of 11.1% of participants (n = 90/808) reported that their primary HS provider had referred them to an obstetrician/gynecologist to help manage their HS, of which 45.6% (n = 41/90) were seen for sexual health issues (Table 1).

Age, disease duration, race and ethnicity, and primary HS provider specialty were not associated with sexual health-related QoL. However, compared to those reporting slight or no impact (31.1%, n = 251/808), greater difficulty accessing dermatologic care (P < .01) (Fig. 1A), higher disease severity by higher PtGA scores (P < .001) (Fig. 1B), anxiety (P < .01), and depression (P < .01) were all significantly associated with moderate to extreme impact on sexual activity (66.7%, n = 539/808).

Fig. 1.

Difficulties accessing dermatologic care and worsening disease activity are associated with reduced sexual activity and desire for sexual activity in hidradenitis suppurativa (HS). These grouped bar graphs depict the relationship between (A) perceived access to dermatologic care and the impact of HS on sexual activity and desire, and (B) self-reported HS disease severity and impact on sexual activity and desire.

Similarly, compared to those reporting slight or no impact (19.8%, n = 160/808), greater difficulty accessing dermatologic care (P < .01) and higher disease severity by higher PtGA scores (P < .001) were significantly associated with moderate to extreme impact on sexual desire (56.2%, n = 454/808). In contrast, anxiety (P = .16) and depression (P = .12) were not associated with changes in sexual desire.

Pregnancy and breastfeeding

Sixty-five point one percent of respondents (n = 526/808) had a history of pregnancy. Of those, 56.5% (n = 297/526) affirmed breastfeeding, and 15% reported that HS interfered with breastfeeding ability (n = 79/526) (Table 2). Twenty-two point one percent of participants (n = 116/526) did not breastfeed for other reasons, including a preference for bottle-feeding (35.3%, n = 41/116) and inability to breastfeed unrelated to HS (43.1%, n = 50/116).

Table 2.

Study participant characteristics during pregnancy and breastfeeding

Characteristics	N	(%)
Previously pregnant	526	(65.1)
Breastfeeding practices
Chose to breastfeed	297	(56.5)
HS interfered	79	(26.6)
HS did not interfere	218	(73.4)
Did not breastfeed for other reasons	116	(22.1)
Preferred bottle feeding	41	(35.3)
Unable to breastfeed	50	(43.1)
Afraid to breastfeed	9	(7.8)
Unspecified reason	16	(13.8)
N/A	19	(3.6)
Did not answer	94	(17.9)

HS, hidradenitis suppurativa.

The top barriers to care during pregnancy and breastfeeding included believing nothing could be done for HS during pregnancy and breastfeeding (31.6%, n = 94/297), not yet receiving a diagnosis of HS from a healthcare provider (20.5%, n = 61/297), and the inability to find a provider knowledgeable about HS treatment during pregnancy (18.2%, n = 54/297) (Fig. 2). Other free-response barriers cited included embarrassment, infections, and improvement of symptoms during pregnancy.

Fig. 2.

Patient-reported barriers to obtaining care for hidradenitis suppurativa (HS) during pregnancy and while breastfeeding. This bar graph depicts the proportion of survey respondents with HS who cite each barrier to care.

Discussion

The novel findings in this global study of over 800 women with HS advance our understanding of characteristics associated with impaired sexual health and barriers to obtaining care during pregnancy and while breastfeeding.

This study highlights gaps in sexual health, pregnancy, and breastfeeding in HS and is the largest and most diverse study of female patients with HS to date. Nearly 70% of participants reported moderate to extreme difficulties with sexual activity due to HS, and this was associated with difficulty accessing dermatologic care, increased disease severity, and comorbid depression and anxiety. The cited barriers to care highlight the urgent need to improve knowledge of and access to the management of HS during pregnancy and breastfeeding.

While prior studies have reported rates of sexual dysfunction ranging from 3.5 to 62% and identified associated risk factors, including female sex, active lesions in the groin and genital areas, pain, odor, discharge, physical appearance (eg, scarring) and embarrassment,^5,9–11 the only study that assessed dysfunction, pregnancy, and breastfeeding exclusively in women was a cohort of 59 patients from 2 academic institutions.¹⁰ Furthermore, our study expands the understanding of sexual health in HS by assessing activity, desire, and associated factors in a large, global cohort.

With nearly half of all pregnancies unplanned, dermatologists must understand and counsel on HS disease course during pregnancy and safe, evidence-based treatments with patients of childbearing potential.^12–14 Prior studies have shown that HS is undertreated in pregnant women¹⁵ and impacts decisions to conceive,⁹ and most women do not receive counseling or information from their provider on the impacts of HS during pregnancy (83%, n = 49/59).¹⁰ Our study reveals a knowledge gap among providers, with over 12% of participants reporting they were told treatments for HS are unsafe during pregnancy or breastfeeding. We extend the existing literature on HS in pregnancy and breastfeeding by identifying specific and actionable barriers to care.

Our study may be limited by selection bias, recall bias, and the inability to verify disease severity due to its survey design. HS disproportionately impacts women of color; however, the majority of respondents self-identified as White. Nonetheless, the large sample size, global diversity, and focus on patient-reported outcomes bolster the generalizability of our findings. Future quantitative studies with validated instruments and comparator groups are required to further characterize the impact of HS on sexual health and barriers to care during pregnancy and breastfeeding.

Improved provider and patient awareness of HS clinical course and safe and effective treatments during pregnancy and breastfeeding is crucial to overcoming treatment barriers and improving care of HS patients of childbearing potential.

Conflicts of interest

F.A.B.R. has no conflicts to disclose. L.A.B. received consulting fees from VisualDx and serves as a workgroup chair for the HS Foundation Rx Committee (unpaid). J.L.H. is on the Board of Directors for the Hidradenitis Suppurativa Foundation, and has served as an advisor, investigator, and/or speaker for AbbVie, Amgen, Aclaris, AstraZeneca, Boehringer Ingelheim, Galderma, Incyte, Navigator Medicines, Novartis, Pfizer, Sanofi, Regeneron, and UCB. H.B.N. has received consulting fees from Abbvie, Medscape, Sonoma Biotherapeutics, Union Chimique Belge (UCB), and Novartis; and holds shares in Radera, Inc. She is Vice President of the Hidradenitis Suppurativa Foundation.

Funding

This study was supported by the Dermatology Foundation Diversity Research Supplement Award (F.A.B.R.), NIAMS K23 AR074531 (H.B.N.), and NCATS K12 TR004930 (L.A.B.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Study approval

University of California, San Francisco Institutional Review Board (Protocol #19-27407) approved the survey.

Author contributions

LAB, FABR, JLH, and HBN: Participated in research design, data analysis, and drafting and revising of the manuscript.

Acknowledgments

We acknowledge UCSF Biostatistician Nancy Hills, PhD for her assistance with analysis.

Supplementary data

Supplementary material associated with this article can be found at https://links.lww.com/IJWD/A86 and https://links.lww.com/IJWD/A85.