Social Impact of Hidradenitis Suppurativa Associated With Worse QOL, Mental Health Burden

Patients with hidradenitis suppurativa who reported feelings of stigmatization due to their condition had worse quality of life and higher levels of depression and social anxiety vs those not reporting feelings of stigmatization.

The social impact of hidradenitis suppurativa (HS) may increase the quality of life (QOL) burden and risk of adverse behavioral health outcomes in patients, according to study findings published in Archives of Dermatological Research.

HS is characterized as a debilitating skin disease that can have a negative impact on patient QOL, even in mild presentation. The painful nodules, abscesses, and sinus tracts that affect patients with HS can cause significant psychosocial burden, noted researchers.

In particular, feelings of stigmatization, defined as the awareness of devaluation, discrediting, or social disapproval based on a physical mark or attribute, are of notable concern because they can lead to patient feelings of shame and isolation due to fears of negative reaction.

“Although there are limited quantitative studies assessing feelings of stigmatization using an objective measure, feelings of stigmatization have been associated to be proportionately dependent on the clinical stage and location of the disease,” said the study authors. “Moreover, the association between stigmatization secondary to HS and its relationship to psychiatric comorbidities and burden of HS is limited.”

They conducted an observational study of 153 patients (n = 30 clinic; n = 123 mail) between June and September 2018 who had received a clinical diagnosis of HS from the Atrium Health Wake Forest Baptist Dermatology clinic within the past 5 years to assess stigmatization and its relationship to patient QOL, depression, and social anxiety using objective tools. From this cohort, 67 responses (response rate [RR], 44%) were received (clinic, n = 27 [RR, 90%]; mail, n = 40 [RR, 33%]).

Participants completed the Dermatology Life Quality Index (DLQI) to assess for skin-related QOL; Patient Health Questionnaire 9 (PHQ-9), to assess for depression; and the Brief Fear of Negative Evaluation (BFNE), to assess for social anxiety. Increasing scores on the DLQI, PHQ-9, and BFNE correlate with worse QOL, increasing levels of depression, and social anxiety, respectively.

Participants also completed an adapted version of the Feelings of Stigmatization (FoS) survey to measure stigmatization, which is scored on a range of 0 (minimum stigmatization) to 155 (maximum stigmatization).  Respondents were divided into 2 groups based on the median FoS (72): high stigma (72 or more) and low stigma (less than 72).

The respondent study cohort had a mean age of 39 years, 57% were African American patients, and 90% were female patients. The average stigma score was 74, and the median score was 72. The FoS was shown to correlate (r) weakly with PHQ-9 (r = 0.42) and moderately with DLQI (r=0.68) and BFNE (r = 0.51).

Findings indicated that participants in the high stigma group were more likely to have worse QOL (18.1), higher levels of depression (11.1), and higher social anxiety (30.1) compared with their low stigma counterparts (6.7, P < .001; 4.9, P < .001; 23.2, P < .001, respectively). No difference in disease severity was shown according to FoS.

The limited response rate among the cohort was cited as a potential limitation of the study findings. Moreover, although the FoS is a validated objective measure of stigmatization, it was originally intended for patients with psoriasis.

“Participants who felt more stigmatized were also more likely to have worse QOL, more social anxiety, and depression,” concluded the study authors. “A multidisciplinary patient-centered focus on the treatment of both physical and psychosocial aspects of HS may help decrease HS burden.”


Singh R,  Kelly KA, Senthilnathan A, Feldman SR, Pichardo RO. Stigmatization, a social perception which may have a debilitating impact on hidradenitis suppurativa patients: an observational study. Arch Dermatol Res. 2022;1-4. doi:10.1007/s00403-022-02412-5

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