Expert Knowledge, Attitudes, and Practices in Management of Hidradenitis Suppurativa Pain

Jedrzejczak, Mark J.; Ingram, John R.; Lowes, Michelle A.; Naik, Haley B.; McKenzie-Brown, Anne Marie; Chen, Shuo; Orenstein, Lauren A V

doi:10.1001/jamadermatol.2020.5857

Cited by 13 publications

(18 citation statements)

References 7 publications

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“…The scores employed to assess signs and symptom severity were subjective and varied between studies, with the NRS being the most used tool for symptoms [ 24 , 32 , 33 ]. Furthermore, it is noteworthy that clinicians from North America and Asia are less likely to measure HS symptoms, which may reflect regional differences in clinical assessment or research trends [ 43 ].…”

Section: Discussionmentioning

confidence: 99%

“…Non-steroidal anti-inflammatory drugs, intralesional corticosteroids or neuromodulator medications could be effective treatment for pain [ 44 ]. Moreover, incorporation of psychological therapies may represent an important opportunity for reducing chronic HS pain [ 43 ]. Pain intensity correlated with impairment in QoL in all the studies included [ 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 ].…”

Section: Discussionmentioning

confidence: 99%

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The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

Montero‐Vílchez

Díaz-Calvillo

Rodríguez-Pozo

et al. 2021

IJERPH

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Hidradenitis suppurativa (HS) is a chronic, recurrent and debilitating inflammatory skin disease of the hair follicle that usually presents as painful, deep-seated inflamed lesions in the apocrine gland-bearing areas of the body. HS patients suffer from uncomfortable signs and symptoms, such as pain, pruritus, malodour and suppuration, which may impair patients’ quality of life (QoL). Although HS patients frequently experience these signs and symptoms, they are only occasionally assessed by clinicians and, unexpectedly, the scientific evidence available is limited and heterogeneous. The aim of this study is to summarize the evidence regarding the impact of HS signs and symptoms on QoL to serve as a basis for future research and help clinicians to consider them in the daily care of HS patients. A systematic review and meta-analysis were conducted following PRISMA Guidelines. The following search algorithm was used: (hidradenitis or “acne inversa”) and (pain or itch or odour or malodour or suppuration or oozing or drainage) and (“quality of life”). The literature search identified 836 references, 17 of them met the eligible criteria and were included for analysis, representing 4929 HS patients. Mean age of the participants was 36.28 years and there was a predominance of female sex among study participants. The BMI of the population was in the range of over-weight and about two out five patients were active smokers. Studies included patients with mild to moderate HS, with a mean disease duration of 13.69 years. The HS signs and symptoms assessed were pain, pruritus, malodour and suppuration. Overall, the higher intensity of a sign or symptom correlated with poorer general QoL or specific QoL dimensions including sexual distress, anxiety, depression and sleep. The most frequently employed tool to assess QoL was the Dermatology Life Quality Index (DLQI). DLQI was used in 52.9% of the studies (9/17) with a mean value of 10.70 (2.16 SD). The scores employed to assess signs and symptoms severity were subjective and varied between studies, being the numerical rating scale (NRS) for each of the most used symptoms. The mean NRS value for pain was 3.99 and the mean NRS for pruritus was 4.99. In conclusion, we have summarized, categorized and analyzed the scientific evidence regarding signs and symptoms in HS patients and their impairment in QoL. Their assessment should be thorough and included during routine evaluation of HS patients to motivate therapeutic modifications and increase patients’ health.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

Montero‐Vílchez

Díaz-Calvillo

Rodríguez-Pozo

et al. 2021

IJERPH

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“…Anticonvulsants such as pregabalin and gabapentin are also recommended for chronic pain relief in the North American Guidelines 21 . When asked how they feel about HS pain guidance from published guidelines, experts agree that current guidelines are insufficient for effective implementation in clinical practice 22 …”

Section: Pain Management In Hs Treatment Guidelinesmentioning

confidence: 99%

“…The precise mechanism by which HS causes pain remains unknown, although patients’ pain descriptions suggest that their pain is likely complex, including mechanisms beyond nociceptive pain caused by tissue damage 15–17 . Limited understanding of the pathophysiology of HS pain and lack of disease‐specific pain intervention studies contribute to variation in guidelines for treating HS pain 18–21 and differences in expert approaches to its management 22 . In a survey of 50 international HS dermatologist experts, the most commonly cited barriers to managing HS pain were self‐reported lack of knowledge, concern for treatment side effects, and concern for habit‐forming potential 22 .…”

Section: Introductionmentioning

confidence: 99%

“…pathophysiology of HS pain and lack of disease-specific pain intervention studies contribute to variation in guidelines for treating HS pain [18][19][20][21] and differences in expert approaches to its management. 22 In a survey of 50 international HS dermatologist experts, the most commonly cited barriers to managing HS pain were self-reported lack of knowledge, concern for treatment side effects, and concern for habit-forming potential. 22 The aims of this review are to: (1) review what is known about HS pain pathophysiology, (2) improve general dermatologists' knowledge and comfort with analgesic use, and (3) suggest a holistic approach to managing HS pain.…”

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confidence: 99%

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A practical, comprehensive guide to pain management hidradenitis suppurativa

Williams

Jedrzejczak

et al. 2022

Dermatological Reviews

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Background: Pain is the most impactful symptom of hidradenitis suppurativa (HS) and is highly correlated with patients' quality of life.Methods: This narrative review incorporates literature about HS pain, management of other chronic painful conditions, and expert opinion.Findings: HS causes complex pain with nociceptive, neuropathic, and nociplastic components. This article draws from knowledge about other painful conditions to propose a holistic approach to helping patients with HS manage their pain including characterizing the pain type, tips for effective physician-patient communication, and suggestions for pharmacologic and non-pharmacologic therapies. Conclusion:Pain is one of the most impactful and debilitating symptoms of HS.Improved understanding of the mechanisms that drive pain in HS as well as diseasespecific data supporting effective strategies for managing HS pain are greatly needed.

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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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Expert Knowledge, Attitudes, and Practices in Management of Hidradenitis Suppurativa Pain

Abstract: had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Cited by 13 publications

References 7 publications

The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

A practical, comprehensive guide to pain management hidradenitis suppurativa

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

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