Misdiagnoses and barriers to care in hidradenitis suppurativa: A patient survey

Rick, Jonathan W.; Thompson, Alexander; Fernandez, Jennifer M.; Maarouf, Melody; Seivright, Justine; Hsiao, Jennifer L.; Shi, Vivian Y.

doi:10.1111/ajd.13672

Cited by 10 publications

(9 citation statements)

References 6 publications

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“…Thus, support groups may narrow gaps in education when patients are unable to access or have delays in obtaining dermatological care. 5 The results show HCP's may be underutilizing HS support groups as a recommended resource. HCP's can recommend support groups to address emotional health in addition to other mental health referrals.…”

Section: Discussionmentioning

confidence: 93%

Support Group Utilization and Perspectives Among Hidradenitis Suppurativa Patients

Shih

Atluri

et al. 2022

J of Skin

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Introduction: Hidradenitis suppurativa (HS) is a chronic inflammatory dermatosis associated with significant psychosocial burden. HS patients are more likely to experience mental health comorbidities such as depression and anxiety. They may also experience isolation due to fear of stigmatization as HS lesions are often associated with pain, scarring, and odor. This study investigates the perspectives of HS patients on HS support groups and the usage of this resource among this population. Methods: An anonymous Redcap survey was utilized via online social media HS support groups between 10/2021-1/2022 to collect demographic, usage, and perspective data. Comparative statistics were conducted and p-value of <0.05 was considered significant. Results: Of the 166 respondents, 78% respondents were part of an HS support group however, only 12% of respondents were recommended to join by their main HS healthcare provider and most (68%) learned about support groups through their own internet searches. Most respondents were daily (42%) and weekly (38%) support group users. Virtual meetings were preferred by the majority compared to in person meetings (50% vs 13%). The top reasons respondents reported attending support groups were to better understand HS, increasing their knowledge of HS resources, and access to treatment/care tips. Respondents without dermatologists as their main HCP and skin of color (SOC) respondents were more likely to report that support groups improved their care of HS (4.29 vs 3.90, p=0.031). Conclusion: Our findings highlight the preferential format of virtual support groups and that support groups may be an underutilized resource by healthcare providers for their patients. Support groups may help to narrow gaps in education when patients are unable to access or have delays in obtaining dermatological care, especially in SOC patients who have historically experienced higher rates of healthcare disparities.

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Section: Discussionmentioning

confidence: 93%

Support Group Utilization and Perspectives Among Hidradenitis Suppurativa Patients

Shih

Atluri

et al. 2022

J of Skin

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“… 1 Patients may experience misdiagnoses or progressive disease before receiving an accurate diagnosis. 2 Meeting patient needs in time-constrained clinic visits may be challenging for healthcare providers (HCPs). Herein, we characterize HS patient priorities during clinic visits.…”

Section: Dear Editorsmentioning

confidence: 99%

Optimizing hidradenitis suppurativa clinic visits: Patient perspectives

Shih

Brooks

et al. 2022

International Journal of Women’s Dermatology

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“…Our results show that nearly one-fourth of respondents did not feel confident in diagnosing HS and almost half were not confident in managing mild HS. Important educational areas for OB-GYNs include earlier HS diagnosis, especially given the prevalence of misdiagnosis of HS, 2 and management of mild HS. One German study found that approximately 30% of patients had consulted gynecologists for HS symptoms, but only around 5% were ultimately diagnosed by gynecologists.…”

Section: Dear Editorsmentioning

confidence: 99%