Hidradenitis Suppurativa Is Associated with Severe Sexual Impairment.

INTRODUCTION: Hidradenitis suppurativa (HS) is a chronic inflammatory disorder of the pilosebaceous unit, often affecting and deforming intimate regions. HS is associated with severe pain, pruritus, and constant, purulent, malodorous discharge expected to impair sexual health of patients. METHODS: We performed a cross-sectional, multicentric study involving 199 German patients from the health services research project "Epidemiology and Care in Acne inversa (EpiCAi)." The sexual health, HS severity, and quality of life of the studied group were evaluated using a specially designed questionnaire. RESULTS: Regardless of gender, HS has an enormous impact on patients' sexual health. The patients scored, on average, 28.8 ± 5.3 points on the Relation and Sexuality Scale (RSS). Multiple linear regression revealed that females and patients with Hurley III stage had higher sexual dysfunction (p = 0.012). Sexual dysfunction is associated with pain (ß = 0.25), the number of active lesions, the affected areas (ß = 0.14), and psychosocial aspects, including low quality of life (ß = 0.404), stigmatization (ß = 0.411), depression (ß = 0.413), and anxiety (ß = 0.300). Patients already see a substantial decrease in sexual frequency in the early stages of HS, while functional impairment and fear increase with the severity of the disease. CONCLUSION: Sexual health and management of its dysfunctions should be part of a holistic approach to HS patients.

Electronic Patient-Reported Outcomes in Hidradenitis Suppurativa: Content Validity and Usability of the Electronic Hidradenitis Suppurativa Symptom Daily Diary, Hidradenitis Suppurativa Symptom Questionnaire, and Hidradenitis Suppurativa Quality of Life Questionnaire.

BACKGROUND: Hidradenitis suppurativa (HS), a chronic skin condition that causes pain and physical dysfunction, can impact significantly on quality of life. Disease-specific tools have been designed to assess the impact of HS on patients, including the HS Symptom Daily Diary (HSSDD), the HS Symptom Questionnaire (HSSQ), and the HS Quality of Life (HiSQOL©) questionnaire, which have been developed into electronic instruments (eHSSDD, eHSSQ, and eHiSQOL©). OBJECTIVES: The objective of this study was to establish the content validity of the electronic version of the HSSDD and HSSQ, and the acceptability and usability of the HSSDD, HSSQ, and HiSQOL©, using concept elicitation and cognitive debriefing interviews. METHODS: This was a non-interventional qualitative video interview study involving participants aged ≥18 years with moderate to severe HS recruited from a single clinical site in the USA. Interviews gathered feedback on participants' symptom experience, followed by training and completion of the eHSSDD, eHSSQ, and eHiSQOL© questionnaires on electronic handheld devices. Participants were then interviewed on the content of the eHSSDD and eHSSQ and the acceptability and usability of all three instruments. Interviews were transcribed and qualitatively analysed. RESULTS: Twenty participants with moderate to severe HS (median age: 41.5 [range: 20.0-64.0]; n = 16/20 female) were included. All participants found the eHSSDD, eHSSQ, and eHiSQOL© instructions clear and described the instruments as "easy", "simple" and "self-explanatory". Overall understanding of individual items within the eHSSDD and eHSSQ was high; however, 6/20 participants had difficulty in understanding the average skin pain item in the eHSSDD. All participants were able to accurately recall their symptoms within the recall periods of the eHSSDD and eHSSQ, although 4/20 participants found the 24-h recall period of the eHSSDD limiting. Completion time was quick across all instruments, and usability was high, with the majority of participants reporting no difficulty in completing questionnaires on electronic devices. CONCLUSION: The concepts covered in the eHSSDD and eHSSQ are relevant and important to patients, supporting their content validity. The findings also provide evidence of acceptability and usability of the eHSSDD, eHSSQ, and eHiSQOL©. A limitation was that all participants were recruited from a single site, which may have introduced selection bias and thus limited the generalisability of results.

Item-specific patterns of the Skindex-17 in individuals with different levels of Hidradenitis Suppurativa severity: a network analysis study.

Background: Recent studies are stressing the idea that the level of Hidradenitis Suppurativa (HS) severity does not always correspond to the same illness load. In fact, it was found that there was no significant association between Skindex-17 and clinical severity of HS, and that some items of the Skindex-17 might be more related to HS severity than others. Objective: The aim of the current study was to explore the associations between different levels of clinical severity of HS (mild, moderate, severe) and the Skindex-17 single-item responses in a large sample of adults patients. Methods: A cross-sectional study with a sample include 547 consecutive HS patients, approaching for the first time the specific dermatologic evaluation. Eligible criteria included age ≥ 18 years, HS diagnosis formulated contextually by the same expert clinician, and providing informed consent. All participants completed the Skindex-17 and were evaluated for the disease clinical severity with the International Hidradenitis Suppurativa Severity Score System. A Network Analysis was conducted, which represents a powerful methodological approach in clinical research. It allows to study specific patterns and the structure of complex system in order to better understand how the elements of the system interact with each-other. Three different Network Analyses were conducted for each group of HS clinical severity by including the items of the Skindex-17 as the nodes of each network. Results: Among 547 patients, 40% (219) were female and mean age was of 32.70 (±11.41). Different patterns among items of the Skindex-17 for the three clinical severity groups emerged, meaning that in each group different items are more crucial than others. The psychosocial subscale of the Skindex-17 is the most relevant when assessing the Quality of Life of individuals with different levels of HS severity, however, with the progression of the disease, individuals place attention also on two different aspects of the symptoms subscale of the Skindex-17, irritation and pain, which in turn perfectly reflect the severity of HS, from a clinical perspective. Conclusion: These results provide new insights on the association between levels of HS severity and related Quality of Life, measured with the Skindex-17.

Self-management-competency as a new target in Hidradenitis suppurativa care.

Background: Hidradenitis suppurativa affects approximately 1% of the population.Objective: Highlighting the relevance of self-management-competency as a new therapeutic target.Method: 258 patients from the 'Epidemiology and Care in Acne inversa (EpiCAi)' project were included in the study. Disease burden was measured by patient-rated questionnaires in terms of disease activity, pain, quality of life, depression and insomnia and correlated with the domains of the health education impact questionnaire (heiQ) measuring self-management-competency.Results: 66 male (25.6%) and 192 female (74.4%) patients, with a mean age of 40.3 ± 10.24 years were included. Mean scores of pain on the numeric rating scale (NRS), Dermatology Life Quality Index (DLQI) and Hospital Anxiety and Depression Scale (HADS) were 5.11 ± 2.68, 11.35 ± 7.79 and 13.71 ± 7.57, respectively. The Insomnia severity index (ISI) showed a mean of 9.58 ± 5.76. The HADS has the highest increased total risk across all heiQ domains. With respect to the heiQ domains, the highest exposure can be attributed to improving constructive attitudes and approaches as well as decreasing emotional distress.Conclusion: There is a clear association of self-management-competency with overall disease burden, which underlines the need for psychoeducational support. This study provides ideas to develop new possible strategies of care.

Internalized Stigma in Hidradenitis Suppurativa: A Multicenter Cross-Sectional Study.

BACKGROUND: Hidradenitis suppurativa (HS) causes significant physical, social, and psychological burdens. Internalized stigma, acceptance of negative attitudes and stereotypes of society regarding a person's illness, has not been studied previously in HS. OBJECTIVES: The objective of this study was to investigate the internalized stigma state of HS patients and identify the factors affecting it. METHODS: This multicenter, prospective, cross-sectional study included 731 patients. Internalized Stigma Scale (ISS), Hurley staging, Physician Global Assessment, Dermatology Life Quality Index (DLQI), Skindex-16, Beck Depression Inventory-II (BDI-II), and Visual Analog Scale (VAS)-pain score were used in the study. RESULTS: The mean ISS value (57.50 ± 16.90) was comparable to the mean ISS values of studies in visible dermatological and various psychiatric diseases. A significant correlation was found between the mean values of ISS and all disease activity scores, quality of life measures, BDI-II, and VAS-pain scores. Obesity, family history, low education and income level, vulva/scrotum involvement and being actively treated are significant and independent predictive factors for high internalized stigma in multivariate analysis. CONCLUSIONS: HS patients internalize society's negative judgements, which may create a profound negative effect on access to health care. Therefore, in addition to suppressing disease activity, addressing internalized stigma is fundamental for improving health care quality.

Stigmatization, a social perception which may have a debilitating impact on hidradenitis suppurativa patients: an observational study.

Hidradenitis suppurativa (HS) is a debilitating disease and patients are prone to feelings of stigmatization. In our cohort, we assessed how feelings of stigmatization may relate to patient quality of life (QOL), depression, and social anxiety. Participants completed the Dermatology Life Quality Index (DLQI) to assess QOL, Patient Health Questionnaire 9 (PHQ-9) to assess depression, the Brief Fear of Negative Evaluation (BFNE) to assess social anxiety, and an adapted version of the Feelings of Stigmatization (FoS) to assess stigmatization. The FoS also correlated with DLQI (R = 0.68), PHQ-9 (R = 0.42), and BFNE (R = 0.52). Participants with greater FoS were also more likely to have worse QOL (18.1), higher levels of depression (11.1), and higher social anxiety (30.1), as compared to those with less FoS (6.7, P < 0.001; 4.9, P < 0.001; 23.2, P < 0.001, respectively). HS is a chronic disease with no definitive treatment. Effective screening protocols, coupled with pharmacological and nonpharmacological interventions, may help patients with HS's psychosocial burden.

Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research.

Hidradenitis suppurativa is a chronic disease that disrupts patients' physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0-4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach's alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa.

Quality of life in patients with early- and late-onset hidradenitis suppurativa.

Hidradenitis suppurativa (HS) usually has an early onset, however, also onset in the mid-40 s may occur. Recently, the threshold of 28 years to distinguish patients with early and late onset has been proposed. The objective of our study was to compare the quality of life (QoL) and psychological distress in early- and late-onset HS patients. In this cross-sectional, observational study, consecutive patients diagnosed with HS aged ≥ 16 years were recruited. Dermatology-specific QoL was evaluated using the Skindex-17 questionnaire, and psychological distress using the 12-item General Health Questionnaire (GHQ-12). Patients were categorized into "early onset" (< 28 years) and "late onset" (≥ 28 years). Data were collected on 467 patients. Mean age at diagnosis was 21.6 years, with 22.0% of patients presenting with late disease onset. Patients with late onset reported worse psychosocial QoL and higher psychological distress compared to early onset. No differences between the two groups were observed for clinical severity. In the final multivariate model lower diagnostic delay, higher number of fistulae, higher BMI, ex-smoker, no localization on axillae, no localization on mammary region, presence of psoriasis, and higher scores on the psychosocial scale of Skindex-17 were statistically significantly associated with late onset. In conclusion, the psychosocial impact of HS is higher in patients with late onset compared to those with early onset. Differences between these two groups should be further investigated.

Hidradenitis suppurativa and suicide risk: a multivariate analysis in a disease with a high psychological burden.

BACKGROUND: Hidradenitis suppurativa (HS) is a disorder that can lead to serious sequelae and important comorbidities. It has been associated with different mental health conditions, such as depression, anxiety or completed suicide. The objective is to analyze the suicide risk (SR) among patients in a monographic HS consultation, as well as to establish individual association factors. METHODS: Patients older than 18 years seen in our specific HS unit were consecutively included and invited to respond to the self-administered Beck hopelessness scale. Those patients with significant intellectual disabilities or severe mental health conditions, including a history of psychosis, were excluded. In addition, data related to the skin process were collected. Subsequently, it was studied whether there were significant differences between patients with absent-mild SR and those with moderate-severe SR and a logistic regression analysis was performed to determine the relationship of these variables with SR. RESULTS: A total of 136 patients were included in the study, 51.5% men. Of them, 21.3% presented a moderate or severe SR (score ≥ 9 in the Beck test). This risk was significantly related to having a previous or concomitant psychiatric disorder (OR = 2.586, 95% CI 1.044-6.409, p = 0.040) followed by the history of biological treatment (OR = 2.867, 95% CI 1.004-8.182, p = 0.049). The existence of other affected relatives was confirmed as a protective factor (OR = 0.377, 95% CI 0.150-0.951, p = 0.039). CONCLUSIONS: The prevalence of SR in patients with HS is higher than that of the general Spanish population. The presence of a psychiatric disorder and the need for biological treatment are established as factors that increase SR, both of which can be interpreted as a more advanced disease. As a protective factor, the presence of other cases in the family is established, which suggests a greater normalization of the disease.

Impact of psychiatric comorbidities in psoriasis, hidradenitis suppurativa and atopic dermatitis: The importance of a psychodermatological approach.

BACKGROUND: There is a strong interaction between the immunological and nervous system in the skin. Lesions that are physically disfiguring and chronically relapsing have a high impact on quality of life (QoL) and can result in the emergence of psychiatric disorders. The literature data confirm a higher prevalence of psychiatric disorders in patients with psoriasis, hidradenitis suppurativa (HS) and atopic dermatitis (AD), but such data are compromised by low-quality evidence due to methodological heterogeneity. OBJECTIVES: The primary aim was to analyse the prevalence of psychiatric comorbidities in a group of psoriasis, AD and HS patients compared with a control group. The secondary aims were to evaluate the impact of psychiatric comorbidities on the disease development, severity, flare-ups and QoL. METHODS: A total of 59 cases and 64 controls were included. RESULTS: Generalized anxiety disorder and depressive disorder with anxious distress were found to be risk factors for AD. Age, smoking and substance-related disorder showed a specific association with HS. Major depressive disorder showed a specific association with dermatology life quality index (DLQI) and all the above disease flare-ups. CONCLUSIONS: Atopic dermatitis, psoriasis and HS are associated with psychiatric disorders. A psychodermatological approach improves outcomes in terms of QoL, disease flare-ups and long-term management.

Associations of Internalized Skin Bias With Age, Adverse Psychopathology, and Health-Related Quality of Life Among Patients With Hidradenitis Suppurativa: A Cross-sectional Analysis.

Importance: Hidradenitis suppurativa (HS) is a chronic autoinflammatory disease that is highly associated with affective disorders such as depression and anxiety. Recent studies have shown that patients with HS may also endorse high levels of internalized skin bias (ISB). This redirection of skin disease-related social stigma toward oneself may also play an important role in the associations between adverse psychopathology (eg, depression, anxiety) and health-related quality of life (HRQOL). Objectives: To evaluate the associations of ISB with other core outcomes in HS and to determine if ISB may mediate the associations between adverse psychopathological outcomes and impaired HRQOL. Design, Setting, and Participants: A cross-sectional study of adult patients with HS recruited from 1 academic medical center as well as through virtual social and recruitment networks. Eligible participants completed an online survey comprised of 4 survey instruments along with demographic and disease history information from April 1, 2021, to July 15, 2021. Main Outcomes and Measures: Measures included the Internalized Skin Bias Questionnaire (ISBQ), Burns Anxiety Inventory, the Beck Depression Inventory-II, the Hidradenitis Suppurativa Quality of Life (HiSQOL) instrument, along with demographic and disease history information. The primary outcome was HRQOL as measured by the HiSQOL. Data were analyzed in July through August 2021. Results: The survey was completed by 230 of 279 patients (82.4%; mean [SD] age, 39.2 [11.2] years; 209 [90.9%] identified as female, 203 [88.7%] as not Hispanic, 178 [77.7%] as White). Depression and anxiety were shown to be a substantial burden in this sample, with 56.5% of participants' scores qualifying for moderate or greater anxiety and 45.7% moderate or greater depression. The mean (SD) HRQOL scores were moderately high at 34.5 (16.7), indicating strong levels of impairment. There was a moderate correlation between ISBQ score and depression (r = 0.67); and fair correlations with HRQOL (r = 0.52) and anxiety (r = 0.56). Therefore, ISB appears to positively mediate the associations between depression and anxiety (estimated proportions of total effect that were mediated, 38.7% and 24.9%, respectively) and HRQOL. After controlling for age, disease severity, and disease duration, both ISB and anxiety were positive predictors of impaired HRQOL. Conclusions and Relevance: This cross-sectional study found that ISB was associated with adverse psychopathology and impaired HRQOL in patients with HS. Furthermore, ISB appears to mediate the associations of depression and anxiety with HRQOL. Future studies are needed to design interventions targeted at addressing adverse psychopathology associated with ISB and improving HRQOL and well-being for patients with HS.

¿Afecta la hidradenitis supurativa a la calidad de vida del paciente? Una revision de la literatura / Does hidradenitis suppurativa affect the patient's quality of life? A review of the literature

La hidradenitis supurativa es una enfermedad autoinmune crónica debida a la obstrucción de un folículo piloso, que da lugar a la formación de nódulos. Se desconoce la etiología concreta. Algunos factores desencadenantes son los antecedentes familiares, la obesidad, el hábito tabáquico, la ropa ajustada y los factores hormonales e inmunológicos, entre otros. La sintomatología típica es dolor, supuración, prurito y mal olor, y puede llegar a generar cicatrices, fístulas y tunelizaciones. Las localizaciones de las lesiones típicas son en axilas, zona inguinal, perianal y zona mamaria. Cursa con brotes y no es contagiosa. Dependiendo del estadio existen diferentes tratamientos para esta. El diagnóstico se basa en una entrevista sobre los antecedentes familiares, la localización de las lesiones, las manifestaciones clínicas y la alta recurrencia de la enfermedad. Afecta a un 1% de la población mundial, con mayor incidencia a las mujeres. Objetivos: Investigar si la patología afecta a la calidad de vida de los pacientes y averiguar las repercusiones en esta. Metodología: Se realizó mediante una revisión sistemática de los últimos 5 años, tanto de la hidradenitis supurativa como de la pregunta a estudio en las siguientes bases de datos: Google Académico, PubMed, CINAHL, Web of Science, Scopus y Cochrane. Resultados: Los pacientes refieren tener una peor calidad de vida debido a síntomas de la hidradenitis supurativa, como el dolor, prurito y mal olor. Estos afectan en su vida diaria, vida laboral y relaciones sociales, entre otros. Conclusiones: Tras la búsqueda, se afirma la pregunta de estudio. La calidad de vida del paciente con hidradenitis supurativa está disminuida y deteriorada debido a los síntomas que la cursan. Además, conlleva una serie de comorbilidades tanto psicológicas como personales (AU)

Hidradenitis suppurativa is a chronic autoimmune disease due to the obstruction of a hair follicle leading to the formation of nodules. The specific etiology is unknown. Some triggers are family history, obesity, smoking, tight clothing, hormonal and immunological factors, among others. The typical symptomatology is pain, suppuration, itching, bad smell and can generate scars, fistulas and tunnels. Typical lesion locations are in the armpits, inguinal, perianal, and mammary areas. It has outbreaks and is not contagious. Depending on the stage there are different treatments for it. The diagnosis is based on an interview on the family history, location of the lesions, clinical manifestations and high recurrence of the disease. It affects 1% of the world population, with a higher incidence in women. Objectives Investigate whether the pathology affects the quality of life of patients and find out the repercussions on it. Methods: It was carried out through a systematic review of the last five years of both hidradenitis suppurativa and the question under study in the following databases: Google Scholar, PubMed, CINAHL, Web of Science, Scopus and Cochrane Results: Patients reported having a poorer quality of life due to symptoms of hidradenitis suppurativa such as pain, itching and a bad smell. These affect their daily life, work life, social relationships, among others Conclusions: After the search, the study question is affirmed. The quality of life of the patient with hidradenitis suppurativa is diminished and deteriorated due to the symptoms that occur. In addition, it carries a series of psychological and personal comorbidities (AU)

Treatment strategies for hidradenitis suppurativa: real-life data from a tertiary Greek hospital.

Hidradenitis suppurativa (HS) is a difficult-to-treat chronic relapsing skin disease, which greatly impacts the quality of life. To bring forward real-life challenges in the decision-making process regarding HS treatment. A retrospective observational study was performed with treatment-related data derived from the HS archive of tertiary hospital-based First Department of Dermatology and Venereology of Aristotle University, Greece. Data were available for 121 patients, 63 men (52.7%) and 58 women (47.93%) with a mean age of 38 years. Doxycycline 100 mg twice daily for 1-2 weeks and then once daily for up to a total of 12 weeks was the most popular treatment choice (80 patients, 66.12%), administered for mild-to-moderate disease. Biologics were the second most frequently prescribed treatment, reserved for moderate-to-severe disease (adalimumab: 26 patients, 14.88%, infliximab: 2 patients, 1.65%). All in all, a wide variety of treatment regimens were implemented, with various combinations of topical and systemic agents. Real-life practice reflects the relative paucity of high-quality evidence regarding HS treatment and the absence of a unanimously preferable therapeutic option, leaving both dermatologists and patients defenceless against disease progress and sequelae.

Psychosocial impact of hidradenitis suppurativa: a practical guide for clinicians.

INTRODUCTION: Hidradenitis suppurativa (HS) is a debilitating skin disease with significant and often underappreciated effects on quality of life; available treatments fail to achieve consistent rates of remission. Targeting the psychosocial impact of HS has great potential to improve care for these patients. Although the literature on this topic is broad, there is a lack of specific tools that guide clinicians in this domain. METHODS: The authors surveyed the literature to find the aspects of psychosocial functioning that most significantly impact Health-Related Quality of Life (HRQOL) for HS patients, and which may be assessed in a simple and efficient manner. RESULTS AND DISCUSSION: Depression and anxiety, sexuality and body image, and financial strain were identified as the most significant drivers of poor HRQOL with the greatest potential to be screened for and addressed succinctly and effectively. A practical psychosocial management guide for clinicians is presented. The guide includes a list of preexisting validated screening questions, clear guidelines for interpretation, and a suggested management algorithm all geared toward a 'real-life' medical practice. CONCLUSION: Such an approach holds a great potential for improving the care of patients with HS. Validation of this approach via controlled trials is a logical next step.

Lifestyle modifications associated with symptom improvement in hidradenitis suppurativa patients.

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic, inflammatory skin condition that substantially reduces patient quality of life. Many HS patients ask their dermatologist about potential lifestyle modifications, such as following particular diets or avoiding specific products, in an attempt to alleviate their symptoms. However, insufficient research has been conducted to support well-informed lifestyle modification counseling, and patients frequently defer to anecdotal endorsements of various interventions found on social media support groups. Therefore, we sought to clarify what lifestyle modifications were capable of improving HS symptoms. METHODS: We conducted a survey-based study to examine modifiable risk factors and their association with the severity of HS. Five hundred and ninety-one patients with HS participated in an online survey detailing the severity of their HS symptoms before and after various lifestyle interventions. Average improvements in both subjective and objective ratings of symptom severity were calculated and statistical differences between the levels of improvement seen among various categories of lifestyle interventions were determined. RESULTS: Numerous lifestyle interventions including substantial weight loss, smoking cessation, use of gentle skin and depilatory products, and menstrual regulation were associated with both subjective and objective improvements in symptom severity. CONCLUSIONS: Our results suggest that patients affected by HS may experience clinically significant improvement from a variety of lifestyle modifications.