Pregnancy in Hidradenitis Suppurativa—Patient Perspectives and Practice Gaps

Abstract

This survey study reports on patients’ concerns about the implications of hidradenitis suppurativa for sexual and reproductive health, heritability of the condition, and pregnancy and childbirth as well as the inadequate information and support from clinicians.

Hidradenitis suppurativa (HS) is a chronic inflammatory disease that is disproportionately prevalent among women of reproductive age.¹ Inflammatory conditions such as systemic vasculitis and systemic lupus erythematosus during pregnancy have adverse outcomes, including increased preterm birth and pregnancy loss.² Yet, few data regarding the implications of HS for pregnancy are available, limiting the ability to counsel and deliver care to women with HS.³ Results of this survey study characterize the perspectives and practice gaps related to pregnancy and childbirth among female patients with HS.

Methods

Between September 1, 2019, and March 30, 2020, an electronic survey with 2 reminders was distributed by email to female patients at 2 academic dermatology departments. These patients were aged 18 to 40 years and had an International Classification of Diseases, Ninth Revision (ICD-9) or an International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) code for HS (ICD-9 code 705.83; ICD-10 code L73.2). Findings were summarized using frequencies and percentages for categorical data and means, SDs, and ranges for continuous data. This study was exempted from review by the institutional review board of the University of Pennsylvania because it was a deidentified survey, and it was approved by the institutional review board of the University of California, Los Angeles, which waived informed consent because the survey posed minimal risk.

Results

Of the 172 patients invited to participate, 59 (34%) responded, with a mean (SD) age of 32 (5.4) years (Table). Twenty-nine respondents (49%) reported ever being pregnant, 5 (9%) reported an inability to conceive despite 12 months of trying, and 7 (12%) reported receiving fertility treatments. Of the 29 respondents who had ever been pregnant, 17 (59%) reported that their most recent pregnancy was planned. Two of the 29 women (7%) were pregnant at the time of the study. Among the remaining 27 women, 20 (74%) had full-term births, 4 (15%) reported miscarriages, and 3 (11%) underwent abortion.

Table. Demographic Information of Respondents (N = 59).

Characteristic	No. (%)
Age, mean (SD) [range], y
At time of survey completion	32.0 (5.4) [21-40]
At time of HS onset	17.8 (6.3) [8-37]
At time of HS diagnosis	24.7 (6.9) [11-39]
During most recent pregnancy	30.0 (5.6) [20-38]
No. of pregnancies, mean (SD) [range]a	2.2 (1.4) [1-6]
Marital status
Married	24 (41)
Single	23 (39)
Partnered	11 (19)
Divorced	1 (2)
Educational level
High school diploma	2 (3)
Some college	17 (29)
Bachelor’s degree	20 (34)
Master’s degree	14 (24)
Doctorate degree or professional training	6 (10)
Race/ethnicity
White	30 (51)
Hispanic or Latino	12 (20)
African American	10 (17)
Middle Eastern	4 (7)
Asian	3 (5)
HS areas of involvement
Groin folds	50 (85)
Axillae	36 (61)
Buttocks	35 (59)
Vulva	30 (51)
Breast	16 (27)
Lower abdomen	9 (15)
Scalp	4 (7)
Behind ears	3 (5)
Posterior neck	3 (5)
Hurley stage
I	9 (15)
II	45 (76)
III	5 (8)
Family history of HS	22 (37)

Abbreviation: HS, hidradenitis suppurativa.

^aNo. of pregnancies among those who reported previous pregnancies (n = 29).

Forty-three women (73%) agreed with the survey statement, “HS negatively impacts my sexual health” (Figure, A). Fourteen patients (24%) believed that HS impedes their ability to become pregnant because of decreased sexual activity (11 [79%]) or because HS medications decrease fertility (8 [58%]). Twenty-nine of 59 respondents (49%) believed that pregnancy requires the discontinuation of all HS medications for safety reasons. Forty of 59 patients (68%) worried that their child would have HS. Twelve of 59 patients (20%) believed HS poses risks to the child, including through HS transmission (8 [67%]) or infection (7 [58%]) during vaginal delivery. Among 13 women (22%) who worried that childbirth would be more difficult, 11 (85%) reported having HS involving the vulva and groin. Among 8 women (14%) who worried breastfeeding would be more difficult, 4 (50%) had HS involving the breast.

Figure. Survey Results.

HS indicates hidradenitis suppurativa.

Most patients reported not receiving counseling or information from their physician on how HS could impact pregnancy (49 [83%]), heritability of the disease (47 [80%]), and sexual health (45 [76%]), or how HS medications could impact pregnancy (42 [71%]) (Figure, B). Thirty-two women (54%) wished their physician provided more counseling on HS and pregnancy.

Discussion

These findings identified patient concerns regarding the implications of HS for sexual function, fertility, pregnancy, and childbirth and revealed practice gaps in HS counseling and care. These factors may have unfavorable implications for family planning and mental health and may play a role in the inadequate treatment of HS in patients who are pregnant or planning to become pregnant. Survey respondents were aware that inadequate counseling from clinicians was an important practice gap, and most respondents expressed a desire for more information. In turn, this gap reflects the paucity of data to guide counseling.⁴

Although the rate of unplanned pregnancy among respondents is similar to national data on unintended pregnancy, this finding supports the need for family planning counseling in women with HS. Unplanned pregnancies are associated with decreased prenatal care, posing health risks to women and their children.⁵ Family planning and prenatal counseling are particularly critical for those with HS given that clinicians weigh the risks of medication use against the benefits of disease control, which is associated with improved pregnancy outcomes for those with inflammatory conditions. The miscarriage rate of 15% is consistent with that in the general US population and is similar to that reported previously in HS.⁶

This survey study highlights the important concerns and practice gaps regarding the reproductive health of female patients with HS. The study limitations include recall bias, low response rate, use of a nonvalidated survey, and generalizability to nonacademic settings. Improved counseling and systematic evaluation of outcomes associated with pregnancy and HS are needed.