Pain management modalities for hidradenitis suppurativa: a patient survey

Fernandez, Jennifer M.; Thompson, Alexander; Borgstrom, Mark; Orenstein, Lauren A V; Hsiao, Jennifer L.; Shi, Vivian Y.

doi:10.1080/09546634.2020.1822501

Cited by 12 publications

(15 citation statements)

References 4 publications

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“…Additionally, our results showed that the primary treatment goal for the majority (90%) of patients was to control rather than cure their HS symptoms, suggesting respondents understand that HS is a chronic disease, and stressing the impact and severity of symptoms. The high prevalence of pain in our study is in line with results from two previous surveys, 13,14 both of which showed that nearly all patients experienced pain. Additionally, our results that only 56% of respondents had their pain managed by HCPs is similar to findings from two surveys, 14,15 which found 24% and 65% of patients, respectively, received medical attention for pain.…”

Section: Discussionsupporting

confidence: 92%

“…The high prevalence of pain in our study is in line with results from two previous surveys, 13,14 both of which showed that nearly all patients experienced pain. Additionally, our results that only 56% of respondents had their pain managed by HCPs is similar to findings from two surveys, 14,15 which found 24% and 65% of patients, respectively, received medical attention for pain. These results stress the importance of HCP inquiry into pain management and highlight the necessity for development of effective pain strategies to manage HS 13,14 .…”

Section: Discussionsupporting

confidence: 92%

“…These results stress the importance of HCP inquiry into pain management and highlight the necessity for development of effective pain strategies to manage HS. 13,14 Further, our results that 59% of respondents had at least 2 days/month of HS-related work absence support previous survey results showing found that 58% of patients had HS-related absence from work, with an annual mean absence of 34 days (range 3-96 days). 16 Our finding of a negative impact on intimacy in 87% of respondents is supported by the results of a previous survey that showed a significant and unrecognized impact of HS on sexuality.…”

Section: Discussionsupporting

confidence: 90%

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Patient experiences with hidradenitis suppurativa: the Hidradenitis Patient Experience survey

Kashetsky

Mukovozov

Pereira³

et al. 2021

Clin Experimental Derm

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Summary Background Better understanding of the experience of people living with hidradenitis suppurativa (HS) is essential to identify gaps in current patient care and inform healthcare decision‐making. Aim To describe the patient experience of individuals with HS, including their path to diagnosis, symptom control, treatments, healthcare utilization, patient needs and impact on quality of life. Methods The Hidradenitis Suppurativa Patient Experience survey was created, extensively reviewed and disseminated through engaging HS‐related patient organizations, physician groups and social media groups. Results In total, 537 respondents completed the survey; the mean age was 38 years (range 14–73 years) and 95% (510 of 537) were female. The mean number of treatment types per respondent was 15, and included antibacterial soaps (93.3%; 431 of 462), avoidance of tight clothing (90.9%; 419 of 462), use of oral antibiotics (79.7%; 368 of 462), nonprescription drugs (79.7%; 368 of 462) and topical antibiotics (77.1%; 356 of 262). Pain was poorly controlled in 46% of respondents (184 of 401). HS had a negative impact on the ability to work and attend school for 81% of respondents (337 of 415), with 59% (245 of 415) missing at least 2 days of work a month and 16% (66 of 415) missing > 11 days of work. The mean number of misdiagnoses per respondent was three and the median time to diagnosis was 10 years. Conclusion Individuals with HS experience a delay in diagnosis and have suboptimal control of the disease. We propose 11 recommendations to improve diagnosis, treatment and quality of life for individuals living with HS.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 90%

See 1 more Smart Citation

Patient experiences with hidradenitis suppurativa: the Hidradenitis Patient Experience survey

Kashetsky

Mukovozov

Pereira³

et al. 2021

Clin Experimental Derm

View full text Add to dashboard Cite

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“…Self-reported pain management has been previously described in HS patients and includes both pharmacological and physical/non-pharmacological treatment approaches, reflecting the complex pain phenotype of this condition [15]. Interestingly, the different use of warm-or cold-compresses in our study and in a recent web-based patient survey may reflect the different somatosensory perceptions experienced by patients during the fluctuating disease-course (inflammatory flare vs. chronic state) [12].…”

Section: Discussionmentioning

confidence: 68%

“…The prevalence of a neuropathic pain component in the HS patient population is poorly described but has been consistently reported in other chronic inflammatory skin conditions, such as psoriasis, psoriatic arthritis and atopic dermatitis [8][9][10]. Despite the central role of pain as a relevant outcome measure in clinical trials, therapeutic management of pain in HS patients is limited and current clinical practice guidelines (CPGs) do offer only generic advice on specific pain medications [11,12]. Recently, Savage et al proposed a tailored treatment algorithm for HS-related pain, stratifying interventions on the basis of pain severity and nociceptive/neuropathic pain components.…”

Section: Introductionmentioning

confidence: 99%

Prevalence of Neuropathic Pain and Related Characteristics in Hidradenitis Suppurativa: A Cross-Sectional Study

Garcovich

Muratori

Moltrasio

et al. 2020

JCM

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Background: Pain is a core symptom of hidradenitis suppurativa (HS) and is of complex, multifactorial origin. HS patients frequently report typical neuropathic pain qualities, but its prevalence has been poorly described. Methods: In this cross-sectional study, we examine the prevalence of neuropathic pain (NP) component and related pain-characteristics of a hospital-based cohort of patients with symptomatic HS. We administered the pain-DETECT tool (PDQ), a validated screening tool for NP, collecting clinical and patient-reported data on pain, pruritus and pain-management. We obtained 110 complete datasets from symptomatic HS patients (49.1% females; Hurley I (27.3%])–II (45.5%)–III (27.3%)). According to the PDQ tool, 30% of patients were classified with a high probability (>90%) of neuropathic pain (LNP). LNP status was significantly associated with increased pain severity, disease activity, pruritus intensity and use of pain medication. Regression analysis showed a significant impact of the PDQ score on patient-reported outcomes, including pain severity and the dimensions of activity and affective pain interference. HS patients may present a mixed chronic pain phenotype with a neuropathic component, thus requiring additional pain-assessments. A multi-modal approach to pain management, in combination with disease-specific treatment, should be implemented in future interventional studies.

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Patient Perspectives of Health System Barriers to Accessing Care for Hidradenitis Suppurativa

et al. 2023

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ImportancePatient-perceived barriers to hidradenitis suppurativa (HS) care are poorly understood. Understanding health care barriers is a critical first step toward improving care for this population.ObjectiveTo characterize the health care experiences of people living with HS, including perceived barriers and facilitators to health care access, and to elucidate potential associations among these barriers and facilitators, health care access, and disease activity.Design, Setting, and ParticipantsIn this qualitative study, an inductive thematic analysis was conducted on 45 in-depth, 60- to 90-minute semistructured interviews of 45 people with HS from diverse sociodemographic backgrounds that took place between March and April 2020. Individuals were eligible if they could speak English, were 18 years or older, and were diagnosed with HS. A diagnosis of HS was confirmed through physician diagnosis or through self-reported, affirmative response to the validated screening question, “Do you experience boils in your armpits or groin that recur at least every six months?”Main Outcomes and MeasuresInterviews were audio recorded and transcribed verbatim. A modified grounded theory approach was used to develop the codebook, which investigators used for inductive thematic analysis.ResultsAmong the 45 participants included, the median (IQR) age was 37 (16) years, 33 (73%) were female, and 22 (49%) were White. There were 6 interrelated themes associated with participant-perceived barriers to accessing HS care: (1) bidirectional associations of disease activity and employment, (2) association of employment with health care coverage, (3) association of health care coverage with costs and perceived access to care, (4) association of costs with access to patient-centered care, (5) health care professional attitudes and knowledge influence patient-centered care and perceived access to care and disease activity, and (6) health system characteristics influence patient-centered care and associated costs, perceived access to care, and disease activity.Conclusions and RelevanceThis qualitative study highlights themes that generate a conceptual model for understanding barriers that may act synergistically to limit health care access and influence disease activity. The disease activity of HS may be reduced when cycle elements are optimized. This study also highlights areas for future investigations and potential systems-level changes to improve access to patient-centered HS care.

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Pain management modalities for hidradenitis suppurativa: a patient survey

Cited by 12 publications

References 4 publications

Patient experiences with hidradenitis suppurativa: the Hidradenitis Patient Experience survey

Patient experiences with hidradenitis suppurativa: the Hidradenitis Patient Experience survey

Prevalence of Neuropathic Pain and Related Characteristics in Hidradenitis Suppurativa: A Cross-Sectional Study

Patient Perspectives of Health System Barriers to Accessing Care for Hidradenitis Suppurativa

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