109 results on '"Matusiak L"'
Search Results
2. Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice A HiSTORIC Consensus Statement
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Mastacouris, N, Tannenbaum, R, Strunk, A, Koptyev, J, Aarts, P, Alhusayen, R, Bechara, FG, Benhadou, F, Bettoli, V, Brassard, A, Brown, D, Choon, SE, Coutts, P, da Silva, DLF, Daveluy, S, Dellavalle, RP, del Marmol, V, Emtestam, L, Gebauer, K, George, R, Giamarellos-Bourboulis, EJ, Goldfarb, N, Hamzavi, I, Hazen, PG, Horváth, B, Hsiao, J, Ingram, JR, Jemec, GBE, Kirby, JS, Lowes, MA, Marzano, AV, Matusiak, L, Naik, HB, Okun, MM, Oon, HH, Orenstein, LAV, Paek, SY, Pascual, JC, Fernandez-Peñas, P, Resnik, BI, Sayed, CJ, Thorlacius, L, van der Zee, HH, van Straalen, KR, Garg, A, Mastacouris, N, Tannenbaum, R, Strunk, A, Koptyev, J, Aarts, P, Alhusayen, R, Bechara, FG, Benhadou, F, Bettoli, V, Brassard, A, Brown, D, Choon, SE, Coutts, P, da Silva, DLF, Daveluy, S, Dellavalle, RP, del Marmol, V, Emtestam, L, Gebauer, K, George, R, Giamarellos-Bourboulis, EJ, Goldfarb, N, Hamzavi, I, Hazen, PG, Horváth, B, Hsiao, J, Ingram, JR, Jemec, GBE, Kirby, JS, Lowes, MA, Marzano, AV, Matusiak, L, Naik, HB, Okun, MM, Oon, HH, Orenstein, LAV, Paek, SY, Pascual, JC, Fernandez-Peñas, P, Resnik, BI, Sayed, CJ, Thorlacius, L, van der Zee, HH, van Straalen, KR, and Garg, A
- Abstract
Importance: Although several clinician- and patient-reported outcome measures have been developed for trials in hidradenitis suppurativa (HS), there is currently no consensus on which measures are best suited for use in clinical practice. Identifying validated and feasible measures applicable to the practice setting has the potential to optimize treatment strategies and generate generalizable evidence that may inform treatment guidelines. Objective: To establish consensus on a core set of clinician- and patient-reported outcome measures recommended for use in clinical practice and to establish the appropriate interval within which these measures should be applied. Evidence Review: Clinician- and patient-reported HS measures and studies describing their psychometric properties were identified through literature reviews. Identified measures comprised an item reduction survey and subsequent electronic Delphi (e-Delphi) consensus rounds. In each consensus round, a summary of outcome measure components and scoring methods was provided to participants. Experts were provided with feasibility characteristics of clinician measures to aid selection. Consensus was achieved if at least 67% of respondents agreed with use of a measure in clinical practice. Findings: Among HS experts, response rates for item reduction, e-Delphi round 1, and e-Delphi round 2 surveys were 76.4% (42 of 55), 90.5% (38 of 42), and 92.9% (39 of 42), respectively; among patient research partners (PRPs), response rates were 70.8% (17 of 24), 100% (17 of 17), and 82.4% (14 of 17), respectively. The majority of experts across rounds were practicing dermatologists with 18 to 19 years of clinical experience. In the final e-Delphi round, most PRPs were female (12 [85.7%] vs 2 males [11.8%]) and aged 30 to 49 years. In the final e-Delphi round, HS experts and PRPs agreed with the use of the HS Investigator Global Assessment (28 [71.8%]) and HS Qu
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- 2023
3. Low and high body mass index in hidradenitis suppurativa patients—different subtypes?
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Theut Riis, P., Saunte, D.M., Benhadou, F., del Marmol, V., Guillem, P., El‐Domyati, M., Abdel‐Wahab, H., Antoniou, C., Dessinioti, C., Gürer, M.A., Beksaç, B., Szepietowski, J.C., Matusiak, L., Emtestam, L., Lapins, J., Riad, H., Doss, N., Massa, A.F., Hamzavi, I., Nicholson, C., Dolenc‐Voljc, M., Kim, K.H., Ohn, J., Zouboulis, C.C., Karagiannidis, I., Mokos, Z.B., Durinec, P., and Jemec, G.B.E.
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- 2018
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4. Identification of clinical features affecting diagnostic delay in paediatric hidradenitis suppurativa: results from a multicentre observational study
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Di Cesare, A. Nikolakis, G. Kanni, T. Giamarellos-Bourboulis, E.J. Matusiak, L. Szepietowski, J.C. Zouboulis, C.C. Prignano, F.
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- 2022
5. Genital elephantiasis associated with hidradenitis suppurativa: O15–6
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Lelonek, E., Matusiak, L., Bieniek, A., and Szepietowski, J. C.
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- 2016
6. Chitinase-3-like protein 1 (YKL-40): novel biomarker of hidradenitis suppurativa disease activity?: O08–1
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Matusiak, L., Bieniek, A., and Szepietowski, J. C.
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- 2016
7. Circulating endothelial progenitor cells (EPCs) in hidradenitis suppurativa patients: O01–3
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Matusiak, L., Batycka-Baran, A., Bieniek, A., and Szepietowski, J. C.
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- 2016
8. Diagnostic delay in hidradenitis suppurativa is a global problem
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Saunte, D. M., Boer, J., Stratigos, A., Szepietowski, J. C., Hamzavi, I., Kim, K. H., Zarchi, K., Antoniou, C., Matusiak, L., Lim, H. W., Williams, M., Kwon, H. H., Gurer, M. A., Mammadova, F., Kaminsky, A., Prens, E., van der Zee, H. H., Bettoli, V., Zauli, S., Hafner, J., Lauchli, S., French, L. E., Riad, H., El-Domyati, M., Abdel-Wahab, H., Kirby, B., Kelly, G., Calderon, P., del Marmol, V., Benhadou, F., Revuz, J., Zouboulis, C. C., Karagiannidis, I., Sartorius, K., Hagstromer, L., McMeniman, E., Ong, N., Dolenc-Voljc, M., Mokos, Z. B., Borradori, L., Hunger, R. E., Sladden, C., Scheinfeld, N., Moftah, N., Emtestam, L., Lapins, J., Doss, N., Kurokawa, I., and Jemec, G. B.E.
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- 2015
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9. European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa
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Zouboulis, C. C., Desai, N., Emtestam, L., Hunger, R. E., Ioannides, D., Juhász, I., Lapins, J., Matusiak, L., Prens, E. P., Revuz, J., Schneider-Burrus, S., Szepietowski, J. C., van der Zee, H. H., and Jemec, G. B.E.
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- 2015
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10. Anhedonia in Acne Vulgaris: A Cross-Sectional Study of 104 Consecutive Acne Patients
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Szepietowska M, Stefaniak AA, Krajewski PK, and Matusiak Ł
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acne ,anhedonia ,depression ,psychodermatology ,Dermatology ,RL1-803 - Abstract
Marta Szepietowska, Aleksandra A Stefaniak, Piotr K Krajewski, Łukasz Matusiak Department of Dermatology, Venereology and Allergology, Wroclaw Medical University, Wroclaw, PolandCorrespondence: Piotr K Krajewski, Department of Dermatology, Venereology and Allergology, Wroclaw Medical University, Chalubinskiego 1, Wroclaw, 50-368, Poland, Email piotr.krajewski@umw.edu.plBackground: Anhedonia is defined as a reduced ability to experience or even a total loss of pleasure.Purpose: This study was undertaken to evaluate anhedonia in 104 consecutive acne patients.Material and Methods: Acne severity was assessed with Investigator Global Assessment (IGA), anhedonia was studied with the Snaith-Hamilton Pleasure Scale (SHAPS), Anticipatory and Consummatory Interpersonal Pleasure Scale (ACIPS) and Temporal Experience of Pleasure Scale (TEPS). Moreover, the quality of life (QoL) and stigmatization, as well as depression and anxiety (Hospital Anxiety and Depression Scale – HADS), were additionally evaluated.Results: Anhedonia was found in 20.19% of acne patients and was more common (p=0.007) in males (34.29%) than in females (13.04%). Based on SHAPS, males with acne showed significantly (p=0.049) higher levels of anhedonia (2.39 ± 3.18 points) than acne females (1.26 ± 2.36 points). Anhedonia significantly correlated with the clinical acne severity (SHAPS: r=0.205, p=0.038 and ACIPS: r=− 0.222, p=0.026). Although the intensity of anhedonia did not show any relationship with QoL and stigmatization assessments, there was a significant correlation between anhedonia and depressive symptoms (SHAPS: r=0.310, p< 0.001; ACIPS: r=− 0.364, p< 0.001). Such dependency was not documented for anxiety.Conclusion: Anhedonia seems to be a common phenomenon in acne and should be considered in the holistic approach to acne patients.Keywords: acne, anhedonia, depression, psychodermatology
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- 2024
11. Sexual impairment in patients with hidradenitis suppurativa: a systematic review
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Cuenca‐Barrales, C., primary, Montero‐Vílchez, T., additional, Szepietowski, J.C., additional, Matusiak, L., additional, and Molina‐Leyva, A., additional
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- 2020
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12. Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project
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Garg, A. Neuren, E. Cha, D. Kirby, J.S. Ingram, J.R. Jemec, G.B.E. Esmann, S. Thorlacius, L. Villumsen, B. Marmol, V.D. Nassif, A. Delage, M. Tzellos, T. Moseng, D. Grimstad, Ø. Naik, H. Micheletti, R. Guilbault, S. Miller, A.P. Hamzavi, I. van der Zee, H. Prens, E. Kappe, N. Ardon, C. Kirby, B. Hughes, R. Zouboulis, C.C. Nikolakis, G. Bechara, F.G. Matusiak, L. Szepietowski, J. Glowaczewska, A. Smith, S.D. Goldfarb, N. Daveluy, S. Avgoustou, C. Giamarellos-Bourboulis, E. Cohen, S. Soliman, Y. Brant, E.G. Akilov, O. Sayed, C. Tan, J. Alavi, A. Lowes, M.A. Pascual, J.C. Riad, H. Fisher, S. Cohen, A. Paek, S.Y. Resnik, B. Ju, Q. Wang, L. Strunk, A.
- Abstract
Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. Objective: To evaluate unmet needs from the perspective of HS patients. Methods: Prospective multinational survey of patients between October 2017 and July 2018. Results: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. Limitations: Data were self-reported. Patients with more severe disease may have been selected. Conclusion: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address. © 2019 American Academy of Dermatology, Inc.
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- 2020
13. What causes hidradenitis suppurativa ?—15 years after
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Zouboulis, C.C. (Christos), Benhadou, F. (Farida), Byrd, A.S. (Angel S.), Chandran, N.S. (Nisha), Giamarellos-Bourboulis, E.J. (Evangelos J.), Fabbrocini, G. (Gabriella), Frew, J.W. (John), Fujita, H. (Hideki), González-López, M.A. (Marcos A.), Guillem, P. (Philippe), Gulliver, W.P. (Wayne P.), Hamzavi, I., Hayran, Y. (Yildiz), Horvath, B.H. (Barbara), Hüe, S. (Sophie), Hunger, R.E., Ingram, J.R. (John R.), Jemec, G.B.E. (Gregor), Ju, Q. (Qiang), Kimball, A.B. (Alexa), Kirby, J.S. (Joslyn S.), Konstantinou, M.P. (Maria P.), Lowes, M.A. (Michelle A.), MacLeod, A.S. (Amanda S.), Martorell, A. (Antonio), Marzano, A.V. (Angelo V.), Matusiak, L., Nassif, A. (Aude), Nikiphorou, E. (Elena), Nikolakis, G. (Georgios), Nogueira da Costa, A. (André), Okun, M. (Martin), Orenstein, L.A.V. (Lauren A.V.), Pascual, J.C. (José Carlos), Paus, R. (Ralf), Perin, B. (Benjamin), Prens, E.P. (Errol), Röhn, T.A. (Till A.), Szegedi, A. (Andrea), Szepietowski, J.C. (J.), Tzellos, T. (Thrasyvoulos), Wang, B. (Baoxi), Zee, H.H. (Hessel) van der, Zouboulis, C.C. (Christos), Benhadou, F. (Farida), Byrd, A.S. (Angel S.), Chandran, N.S. (Nisha), Giamarellos-Bourboulis, E.J. (Evangelos J.), Fabbrocini, G. (Gabriella), Frew, J.W. (John), Fujita, H. (Hideki), González-López, M.A. (Marcos A.), Guillem, P. (Philippe), Gulliver, W.P. (Wayne P.), Hamzavi, I., Hayran, Y. (Yildiz), Horvath, B.H. (Barbara), Hüe, S. (Sophie), Hunger, R.E., Ingram, J.R. (John R.), Jemec, G.B.E. (Gregor), Ju, Q. (Qiang), Kimball, A.B. (Alexa), Kirby, J.S. (Joslyn S.), Konstantinou, M.P. (Maria P.), Lowes, M.A. (Michelle A.), MacLeod, A.S. (Amanda S.), Martorell, A. (Antonio), Marzano, A.V. (Angelo V.), Matusiak, L., Nassif, A. (Aude), Nikiphorou, E. (Elena), Nikolakis, G. (Georgios), Nogueira da Costa, A. (André), Okun, M. (Martin), Orenstein, L.A.V. (Lauren A.V.), Pascual, J.C. (José Carlos), Paus, R. (Ralf), Perin, B. (Benjamin), Prens, E.P. (Errol), Röhn, T.A. (Till A.), Szegedi, A. (Andrea), Szepietowski, J.C. (J.), Tzellos, T. (Thrasyvoulos), Wang, B. (Baoxi), and Zee, H.H. (Hessel) van der
- Abstract
The 14 authors of the first review article on hidradenitis suppurativa (HS) pathogenesis published 2008 in EXPERIMENTAL DERMATOLOGY cumulating from the 1st International Hidradenitis Suppurativa Research Symposium held March 30–April 2, 2006 in Dessau, Germany with 33 participants were prophetic when they wrote “Hopefully, this heralds a welcome new tradition: to get to the molecular heart of HS pathogenesis, which can only be achieved by a renaissance of solid basic HS research, as the key to developing more effective HS therapy.” (Kurzen et al. What causes hidradenitis suppurativa? Exp Dermatol 2008;17:455). Fifteen years later, the
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- 2020
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14. Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project
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Garg, A. (Amit), Neuren, E. (Erica), Cha, D. (Denny), Kirby, J.S. (Joslyn S.), Ingram, J.R. (John R.), Jemec, G.B.E. (Gregor), Esmann, S., Thorlacius, L. (Linnea), Villumsen, B. (Bente), Marmol, V.D. (Véronique del), Nassif, A. (Aude), Delage, M. (Maia), Tzellos, T. (Thrasivoulos), Moseng, D. (Dagfinn), Grimstad, Ø. (Øystein), Naik, H. (Haley), Micheletti, R. (Robert), Guilbault, S. (Sandra), Miller, A.P. (Angie Parks), Hamzavi, I., Zee, H.H. (Hessel) van der, Prens, E.P. (Errol), Kappe, N. (Naomi), Ardon, C. (Christine), Kirby, B. (Brian), Hughes, R. (Rosalind), Zouboulis, C.C. (Christos C.), Nikolakis, G. (Georgios), Bechara, F.G. (Falk G.), Matusiak, L., Szepietowski, J. (Jacek), Glowaczewska, A. (Amelia), Smith, S.D. (Saxon D.), Goldfarb, N. (Noah), Daveluy, S. (Steven), Avgoustou, C. (Christina), Giamarellos-Bourboulis, E. (Evangelos), Cohen, S. (Steven), Soliman, Y. (Yssra), Brant, E.G. (Elena Gonzalez), Akilov, O. (Oleg), Sayed, C. (Christopher), Tan, J. (Jerry), Alavi, A. (Afsaneh), Lowes, M.A. (Michelle A.), Pascual, J.C. (José Carlos), Riad, H., Fisher, S. (Shani), Cohen, A. (Arnon), Paek, S.Y. (So Yeon), Resnik, B. (Barry), Ju, Q. (Qiang), Wang, L. (Lanqi), Strunk, A. (Andrew), Garg, A. (Amit), Neuren, E. (Erica), Cha, D. (Denny), Kirby, J.S. (Joslyn S.), Ingram, J.R. (John R.), Jemec, G.B.E. (Gregor), Esmann, S., Thorlacius, L. (Linnea), Villumsen, B. (Bente), Marmol, V.D. (Véronique del), Nassif, A. (Aude), Delage, M. (Maia), Tzellos, T. (Thrasivoulos), Moseng, D. (Dagfinn), Grimstad, Ø. (Øystein), Naik, H. (Haley), Micheletti, R. (Robert), Guilbault, S. (Sandra), Miller, A.P. (Angie Parks), Hamzavi, I., Zee, H.H. (Hessel) van der, Prens, E.P. (Errol), Kappe, N. (Naomi), Ardon, C. (Christine), Kirby, B. (Brian), Hughes, R. (Rosalind), Zouboulis, C.C. (Christos C.), Nikolakis, G. (Georgios), Bechara, F.G. (Falk G.), Matusiak, L., Szepietowski, J. (Jacek), Glowaczewska, A. (Amelia), Smith, S.D. (Saxon D.), Goldfarb, N. (Noah), Daveluy, S. (Steven), Avgoustou, C. (Christina), Giamarellos-Bourboulis, E. (Evangelos), Cohen, S. (Steven), Soliman, Y. (Yssra), Brant, E.G. (Elena Gonzalez), Akilov, O. (Oleg), Sayed, C. (Christopher), Tan, J. (Jerry), Alavi, A. (Afsaneh), Lowes, M.A. (Michelle A.), Pascual, J.C. (José Carlos), Riad, H., Fisher, S. (Shani), Cohen, A. (Arnon), Paek, S.Y. (So Yeon), Resnik, B. (Barry), Ju, Q. (Qiang), Wang, L. (Lanqi), and Strunk, A. (Andrew)
- Abstract
Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. Objective: To evaluate unmet needs from the perspective of HS patients. Methods: Prospective multinational survey of patients between October 2017 and July 2018. Results: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. Limitations: Data were self-reported. Patients with more severe disease may have been selected. Conclusion: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.
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- 2020
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15. Pilonidal sinus disease: an intergluteal localization of hidradenitis suppurativa/acne inversa: a cross-sectional study among 2465 patients
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Benhadou, F. Van der Zee, H.H. Pascual, J.C. Rigopoulos, D. Katoulis, A. Liakou, A.I. Daxhelet, M. Romanelli, M. Iannone, M. Kinyó, Á. Nikolakis, G. Zouboulis, C.C. Dessinioti, C. Zisimou, C. Antoniou, C. Alavi, A. Mintoff, D. Aquilina, S. Matusiak, L. Szepietowski, J.C. Sinclair, R. Husein-ElAhmed, H. von Laffert, M. Revuz, J. Danby, B. Puig, L. Theut Riis, P. Jemec, G.B.E. van van Straalen, K. Wigny, K.M.G.J. del Marmol, V. Guillem, P.
- Abstract
Background: Hidradenitis suppurativa (HS), also referred to as acne inversa, is a debilitating skin disease characterized by inflammatory nodules, chronic abscesses and tunnels (fistulae and sinuses). The association with pilonidal sinus disease (PSD) is frequently reported but not well documented. Objectives: To determine the prevalence and characteristics of inflammatory skin lesions located in the intergluteal fold (IGF) of patients with HS. Methods: This was an international multicentre retrospective cross-sectional study based on data collection from a large cohort of patients with HS with and without histopathology. Results From a total of 2465 patients with HS included in the study, 661 (27%) reported lesions in the IGF. These patients were significantly more often smokers and had more severe HS. Of the 238 patients with an available clinical diagnosis, intergluteal-HS (IG-HS) was diagnosed in 52 patients (22%) and PSD was diagnosed in 186 patients (78%). IG-HS was associated with the localization of HS in the proximity of the IGF, including the buttocks, genitals and the anus. There was a possibility of misclassification bias in this study as a clinical/image-based diagnosis or histopathology of the IGF lesions was not always available. Conclusions: The high prevalence of PSD suggests a strong link between both entities. Therefore, it may be useful to identify common pathophysiological mechanisms and develop common therapeutic strategies. What's already known about this topic?. The occurrence of pilonidal sinus disease has not been clearly reported among patients with hidradenitis suppurativa/acne inversa. What does this study add?. This is the first study that investigated the prevalence of pilonidal sinus disease among a large cohort of patients and identified the patient characteristics. Risk factors that might help to improve the management of patients were identified. © 2019 British Association of Dermatologists
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- 2019
16. Inter‐rater reliability and agreement hidradenitis suppurativa instruments
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Thorlacius, L., primary, Garg, A., additional, Riis, P.T., additional, Nielsen, S.M., additional, Bettoli, V., additional, Ingram, J.R., additional, Marmol, V., additional, Matusiak, L., additional, Pascual, J.C., additional, Revuz, J., additional, Sartorius, K., additional, Tzellos, T., additional, Zee, H.H., additional, Zouboulis, C.C., additional, Saunte, D.M., additional, Gottlieb, A.B., additional, Christensen, R., additional, and Jemec, G.B.E., additional
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- 2019
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17. 化脓性汗腺炎量表的评定者间可靠性和一致性
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Thorlacius, L., primary, Garg, A., additional, Riis, P.T., additional, Nielsen, S.M., additional, Bettoli, V., additional, Ingram, J.R., additional, Marmol, V., additional, Matusiak, L., additional, Pascual, J.C., additional, Revuz, J., additional, Sartorius, K., additional, Tzellos, T., additional, Zee, H.H., additional, Zouboulis, C.C., additional, Saunte, D.M., additional, Gottlieb, A.B., additional, Christensen, R., additional, and Jemec, G.B.E., additional
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- 2019
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18. Inter‐rater agreement and reliability of outcome measurement instruments and staging systems used in hidradenitis suppurativa
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Thorlacius, L., primary, Garg, A., additional, Riis, P.T., additional, Nielsen, S.M., additional, Bettoli, V., additional, Ingram, J.R., additional, Marmol, V., additional, Matusiak, L., additional, Pascual, J.C., additional, Revuz, J., additional, Sartorius, K., additional, Tzellos, T., additional, Zee, H.H., additional, Zouboulis, C.C., additional, Saunte, D.M., additional, Gottlieb, A.B., additional, Christensen, R., additional, and Jemec, G.B.E., additional
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- 2019
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19. Pilonidal sinus disease: an intergluteal localization of hidradenitis suppurativa/acne inversa: a cross‐sectional study among 2465 patients
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Benhadou, F., primary, Van der Zee, H.H., additional, Pascual, J.C., additional, Rigopoulos, D., additional, Katoulis, A., additional, Liakou, A.I., additional, Daxhelet, M., additional, Romanelli, M., additional, Iannone, M., additional, Kinyó, Á., additional, Nikolakis, G., additional, Zouboulis, C.C., additional, Dessinioti, C., additional, Zisimou, C., additional, Antoniou, C., additional, Alavi, A., additional, Mintoff, D., additional, Aquilina, S., additional, Matusiak, L., additional, Szepietowski, J.C., additional, Sinclair, R., additional, Husein‐ElAhmed, H., additional, von Laffert, M., additional, Revuz, J., additional, Danby, B., additional, Puig, L., additional, Theut Riis, P., additional, Jemec, G.B.E., additional, Straalen, K., additional, Wigny, K.M.G.J., additional, Marmol, V., additional, and Guillem, P., additional
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- 2019
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20. Pilonidal sinus disease:an intergluteal localization of hidradenitis suppurativa/acne inversa: a cross-sectional study among 2465 patients
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Benhadou, F., Van der Zee, H. H., Pascual, J. C., Rigopoulos, D., Katoulis, A., Liakou, A. I., Daxhelet, M., Romanelli, M., Iannone, M., Kinyó, Nikolakis, G., Zouboulis, C. C., Dessinioti, C., Zisimou, C., Antoniou, C., Alavi, A., Mintoff, D., Aquilina, S., Matusiak, L., Szepietowski, J. C., Sinclair, R., Husein-ElAhmed, H., von Laffert, M., Revuz, J., Danby, B., Puig, L., Theut Riis, P., Jemec, G. B.E., van van Straalen, K., Wigny, K. M.G.J., del Marmol, V., Guillem, P., Benhadou, F., Van der Zee, H. H., Pascual, J. C., Rigopoulos, D., Katoulis, A., Liakou, A. I., Daxhelet, M., Romanelli, M., Iannone, M., Kinyó, Nikolakis, G., Zouboulis, C. C., Dessinioti, C., Zisimou, C., Antoniou, C., Alavi, A., Mintoff, D., Aquilina, S., Matusiak, L., Szepietowski, J. C., Sinclair, R., Husein-ElAhmed, H., von Laffert, M., Revuz, J., Danby, B., Puig, L., Theut Riis, P., Jemec, G. B.E., van van Straalen, K., Wigny, K. M.G.J., del Marmol, V., and Guillem, P.
- Abstract
Background: Hidradenitis suppurativa (HS), also referred to as acne inversa, is a debilitating skin disease characterized by inflammatory nodules, chronic abscesses and tunnels (fistulae and sinuses). The association with pilonidal sinus disease (PSD) is frequently reported but not well documented. Objectives: To determine the prevalence and characteristics of inflammatory skin lesions located in the intergluteal fold (IGF) of patients with HS. Methods: This was an international multicentre retrospective cross-sectional study based on data collection from a large cohort of patients with HS with and without histopathology. Results From a total of 2465 patients with HS included in the study, 661 (27%) reported lesions in the IGF. These patients were significantly more often smokers and had more severe HS. Of the 238 patients with an available clinical diagnosis, intergluteal-HS (IG-HS) was diagnosed in 52 patients (22%) and PSD was diagnosed in 186 patients (78%). IG-HS was associated with the localization of HS in the proximity of the IGF, including the buttocks, genitals and the anus. There was a possibility of misclassification bias in this study as a clinical/image-based diagnosis or histopathology of the IGF lesions was not always available. Conclusions: The high prevalence of PSD suggests a strong link between both entities. Therefore, it may be useful to identify common pathophysiological mechanisms and develop common therapeutic strategies. What's already known about this topic?. The occurrence of pilonidal sinus disease has not been clearly reported among patients with hidradenitis suppurativa/acne inversa. What does this study add?. This is the first study that investigated the prevalence of pilonidal sinus disease among a large cohort of patients and identified the patient characteristics. Risk factors that might help to improve the management of patients were identified.
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- 2019
21. Arabic language skin-related stigmatization instruments: Translation and validation process
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Dimitrov, D., Matusiak, L., Evers, A., Jafferany, M., Szepietowski, J., Dimitrov, D., Matusiak, L., Evers, A., Jafferany, M., and Szepietowski, J.
- Abstract
Contains fulltext : 205447.pdf (publisher's version ) (Open Access), BACKGROUND: Skin diseases are frequently the reason for social rejection. Therefore, the assessment of stigmatization level in patients suffering from dermatoses plays a crucial role in providing proper health service. OBJECTIVES: The aim of this study was to create and validate Arabic language versions of stigmatization instruments - the 6-item Stigmatization Scale and the Feelings of Stigmatization Questionnaire. MATERIAL AND METHODS: Development of the Arabic language versions was done with international standards of forward-back translations. The validation was performed on 39 psoriatic individuals. The group included 11 females and 28 males. The subjects were asked to fill out both questionnaires: the 6-item Stigmatization Scale and the Feelings of Stigmatization Questionnaire (Arabic language versions) at the time of examination and 7 days after enrollment for reassessment to evaluate test-retest reliability. During the first visit the patients additionally filled out an already existing Arabic version of Dermatology Life Quality Index (DLQI), which was used as a reference questionnaire. RESULTS: The results concerning the integrity of instruments were very good, and the Cronbach's alpha coefficient for both scales was 0.89. The reproducibility level assessed with interclass correlation coefficient (ICC) stood at 0.91 for the 6-item Stigmatization Scale and 0.92 for the Feelings of Stigmatization Questionnaire. There was a strong correlation between total score of the 6-item Stigmatization Scale and DLQI. Significant negative moderate correlation was documented between the Feelings of Stigmatization Questionnaire and DLQI. Moreover, both stigmatization instruments correlated significantly with each other. CONCLUSIONS: The developed Arabic language versions of the abovementioned stigmatization instruments can be successfully used in daily clinical practice as well as in clinical research.
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- 2019
22. Pilonidal sinus disease: an intergluteal localization of hidradenitis suppurativa/acne inversa: a cross-sectional study among 2465 patients
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Benhadou, F, Van der Zee, HH, Pascual, JC, Rigopoulos, D, Katoulis, A, Liakou, AI, Daxhelet, M, Romanelli, M, Iannone, M, Kinyo, A, Nikolakis, G, Zouboulis, CC, Dessinioti, C, Zisimou, C, Antoniou, C, Alavi, A, Mintoff, D, Aquilina, S, Matusiak, L, Szepietowski, JC, Sinclair, R, Husein-ElAhmed, H, von Laffert, M, Revuz, J, Danby, B, Puig, L, Theut Riis, P, Jemec, GBE, van Straalen, K, Wigny, KMGJ, del Marmol, V, Guillem, P, Benhadou, F, Van der Zee, HH, Pascual, JC, Rigopoulos, D, Katoulis, A, Liakou, AI, Daxhelet, M, Romanelli, M, Iannone, M, Kinyo, A, Nikolakis, G, Zouboulis, CC, Dessinioti, C, Zisimou, C, Antoniou, C, Alavi, A, Mintoff, D, Aquilina, S, Matusiak, L, Szepietowski, JC, Sinclair, R, Husein-ElAhmed, H, von Laffert, M, Revuz, J, Danby, B, Puig, L, Theut Riis, P, Jemec, GBE, van Straalen, K, Wigny, KMGJ, del Marmol, V, and Guillem, P
- Abstract
BACKGROUND: Hidradenitis suppurativa (HS), also referred to as acne inversa, is a debilitating skin disease characterized by inflammatory nodules, chronic abscesses and tunnels (fistulae and sinuses). The association with pilonidal sinus disease (PSD) is frequently reported but not well documented. OBJECTIVES: To determine the prevalence and characteristics of inflammatory skin lesions located in the intergluteal fold (IGF) of patients with HS. METHODS: This was an international multicentre retrospective cross-sectional study based on data collection from a large cohort of patients with HS with and without histopathology. Results From a total of 2465 patients with HS included in the study, 661 (27%) reported lesions in the IGF. These patients were significantly more often smokers and had more severe HS. Of the 238 patients with an available clinical diagnosis, intergluteal-HS (IG-HS) was diagnosed in 52 patients (22%) and PSD was diagnosed in 186 patients (78%). IG-HS was associated with the localization of HS in the proximity of the IGF, including the buttocks, genitals and the anus. There was a possibility of misclassification bias in this study as a clinical/image-based diagnosis or histopathology of the IGF lesions was not always available. CONCLUSIONS: The high prevalence of PSD suggests a strong link between both entities. Therefore, it may be useful to identify common pathophysiological mechanisms and develop common therapeutic strategies. What's already known about this topic? The occurrence of pilonidal sinus disease has not been clearly reported among patients with hidradenitis suppurativa/acne inversa. What does this study add? This is the first study that investigated the prevalence of pilonidal sinus disease among a large cohort of patients and identified the patient characteristics. Risk factors that might help to improve the management of patients were identified.
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- 2019
23. Interrater agreement and reliability of outcome measurement instruments and staging systems used in hidradenitis suppurativa
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Thorlacius, L, Garg, A, Riis, P T, Nielsen, S M, Bettoli, V, Ingram, J R, Del Marmol, V, Matusiak, L, Pascual, J C, Revuz, J, Sartorius, K, Tzellos, T, van der Zee, H H, Zouboulis, C C, Saunte, D M, Gottlieb, A B, Christensen, R, Jemec, G B E, Thorlacius, L, Garg, A, Riis, P T, Nielsen, S M, Bettoli, V, Ingram, J R, Del Marmol, V, Matusiak, L, Pascual, J C, Revuz, J, Sartorius, K, Tzellos, T, van der Zee, H H, Zouboulis, C C, Saunte, D M, Gottlieb, A B, Christensen, R, and Jemec, G B E
- Abstract
BACKGROUND: Monitoring disease activity over time is a prerequisite for clinical practice and research. Valid and reliable outcome measurements instruments (OMIs) and staging systems provide researchers and clinicians with benchmark tools to assess the primary and secondary outcomes of interventional trials and to guide treatment selection properly.OBJECTIVES: To investigate interrater reliability and agreement in instruments currently used in Hidradenitis Suppurativa (HS) with HS-experienced dermatologists being the rater population of interest.METHODS: In a prospective completely balanced design, 24 HS patients underwent a physical examination by 12 raters (288 assessments) using nine instruments; analysed using generalised linear mixed models.RESULTS: For the staging systems, the study found good interrater reliability for Hurley staging in the axillae and gluteal region, moderate interrater reliability for Hurley staging in the groin and Physician's Global Assessment, and fair interrater reliability for Hurley staging refined and International HS Severity Scoring System. For all the tested OMIs, the observed intervals for limits of agreement were very wide relative to the ranges of the scales.CONCLUSION: The very wide intervals for limits of agreement imply that substantial changes are needed in clinical research in order to rule out measurement error. The results illustrate a difficulty, even for experienced HS-experts, to agree on the type and number of lesions when evaluating disease severity. The apparent caveats call for global efforts, such as the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) to reach consensus on how valid HS physical signs are best measured reliably in randomised trials. This article is protected by copyright. All rights reserved.
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- 2019
24. Inter‐rater reliability and agreement hidradenitis suppurativa instruments
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Thorlacius, L., Garg, A., Riis, P. T., Nielsen, S. M., Bettoli, V., Ingram, J. R., Del Marmol, V., Matusiak, L., Pascual, J. C., Revuz, J., Sartorius, K., Tzellos, T., van der Zee, H. H., Zouboulis, C. C., Saunte, D. M., Gottlieb, A. B., Christensen, R., Jemec, G. B.E., Thorlacius, L., Garg, A., Riis, P. T., Nielsen, S. M., Bettoli, V., Ingram, J. R., Del Marmol, V., Matusiak, L., Pascual, J. C., Revuz, J., Sartorius, K., Tzellos, T., van der Zee, H. H., Zouboulis, C. C., Saunte, D. M., Gottlieb, A. B., Christensen, R., and Jemec, G. B.E.
- Abstract
Hidradenitis suppurativa (HS) is a long-lasting skin disease with flares of painful boils in areas where skin meets skin, such as the armpits and groins. It affects somewhere between 1 and 40 people out of 1000 worldwide. When trying to measure the effect of a treatment in a clinical trial, so-called 'outcome measurement instruments' are used. These are ways of estimating 'how much' disease is present. It is obviously important that outcome measurement instruments measure the right thing and do not vary at random. It has previously been shown that outcome measurement instruments used in HS trials lack proof of their reliability. This study therefore aimed to find out how consistently 12 HS-experienced dermatologists would score 24 patients with HS, using nine different instruments. The study showed that one called Hurley staging was an acceptable instrument in terms of consistency of scores. However, Hurley staging is suited only for severity staging e.g. to guide the most appropriate treatment in each stage. For instruments designed to measure changes in disease severity, low agreement between the rating dermatologists was found. Therefore, the results question whether HS physical signs are best measured by traditional instruments based on a physician counting individual HS lesions (affected patches). As a result, other assessment methods of physical signs in HS, using technology such as ultrasound, should also be considered.
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- 2019
25. Inter-rater agreement and reliability of outcome measurement instruments and staging systems used in hidradenitis suppurativa
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Thorlacius, L, Garg, A, Riis, P T, Nielsen, SM, Bettoli, V, Ingram, J R, del Marmol, V, Matusiak, L, Pascual, JC, Revuz, J, Sartorius, K, Tzellos, T, van der Zee, Hessel, Zouboulis, CC, Saunte, D M L, Gottlieb, A B, Christensen, R, Jemec, G B, Thorlacius, L, Garg, A, Riis, P T, Nielsen, SM, Bettoli, V, Ingram, J R, del Marmol, V, Matusiak, L, Pascual, JC, Revuz, J, Sartorius, K, Tzellos, T, van der Zee, Hessel, Zouboulis, CC, Saunte, D M L, Gottlieb, A B, Christensen, R, and Jemec, G B
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- 2019
26. Sexual impairment in patients with hidradenitis suppurativa: a systematic review.
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Cuenca‐Barrales, C., Montero‐Vílchez, T., Szepietowski, J.C., Matusiak, L., and Molina‐Leyva, A.
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HIDRADENITIS suppurativa ,QUALITY of life ,SEXUAL dysfunction ,MEDICAL personnel ,PENILE erection ,PENIS curvatures ,PRIAPISM - Abstract
Hidradenitis suppurativa (HS) can cause considerable impact on several aspects of quality of life. Sexuality is a central aspect of quality of life. In recent years, there has been an increase in the number of articles on HS and sexuality. To achieve our aim of synthesizing the available scientific evidence on HS and sexual health, we conducted a systematic review in February 2020. The clinical databases used included Medline and Embase. All types of epidemiological articles were included; reviews, guidelines, protocols, conference abstracts and case report articles were excluded. Eleven studies were included for review, representing 42 729 patients with HS. The most common study design was cross‐sectional with or without comparison group(s), conducted in an outpatient setting or through surveys. Prevalence of sexual dysfunction ranged between 51–62%, and in the case of erectile dysfunction, a specific kind of sexual dysfunction affecting penile erection, it ranged from between 52% and 60% of patients studied using validated questionnaires. Potential risk factors for sexual dysfunction among men and women were identified, mainly related to disease activity, symptoms and partners. Mood disorders like depression and anxiety appear to be associated with sexual dysfunction. Women were more affected by sexual distress. HS patients with sexual dysfunction had a decreased overall quality of life. With respect to treatment, surgery did not improve sexual function and there is no scientific evidence regarding medical treatments. Patients stated that they would like to treat their sexual problems with healthcare professionals. In conclusion, sexual and erectile dysfunction are common in HS patients, and negatively affect their quality of life. There are clinical factors potentially associated with this which should be identified and treated by dermatologists in the comprehensive care of HS patients. Prospective studies are needed to provide more scientific evidence on this unmet need. [ABSTRACT FROM AUTHOR]
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- 2021
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27. Low and high body mass index in hidradenitis suppurativa patients—different subtypes?
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Theut Riis, P. Saunte, D.M. Benhadou, F. del Marmol, V. Guillem, P. El-Domyati, M. Abdel-Wahab, H. Antoniou, C. Dessinioti, C. Gürer, M.A. Beksaç, B. Szepietowski, J.C. Matusiak, L. Emtestam, L. Lapins, J. Riad, H. Doss, N. Massa, A.F. Hamzavi, I. Nicholson, C. Dolenc-Voljc, M. Kim, K.H. Ohn, J. Zouboulis, C.C. Karagiannidis, I. Mokos, Z.B. Durinec, P. Jemec, G.B.E.
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nutritional and metabolic diseases - Abstract
Introduction: Overweight is a well-established risk factor for hidradenitis suppurativa (HS). In this cross-sectional study, we compare HS patients with a high body mass index (BMI) with HS patients with a low BMI to investigate differences in disease characteristics. Materials and method: Patients were recruited from 17 dermatological centres from four continents. A total of 246 patients with a BMI below 25 were compared to 205 patients with a BMI of above 35. Results: Patients with a high BMI suffered more severe disease (Hurley, physician global assessment, number of areas affected and patient-reported severity (PRS), P
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- 2018
28. 化脓性汗腺炎研究的核心结果的全球共识:历史性共识会议I和II的更新
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Thorlacius, L., primary, Garg, A., additional, Ingram, J.R., additional, Villumsen, B., additional, Theut Rii, P., additional, Gottlieb, A.B., additional, Merola, J.F., additional, Dellavalle, R., additional, Ardon, C., additional, Baba, R., additional, Bechara, F.G., additional, Cohen, A.D., additional, Daham, N., additional, Davis, M., additional, Emtestam, L., additional, Fernández-Peñas, P., additional, Filippelli, M., additional, Gibbons, A., additional, Grant, T., additional, Guilbault, S., additional, Gulliver, S., additional, Harris, C, additional, Harvent, C., additional, Houston, K., additional, Kirby, J.S., additional, Matusiak, L., additional, Mehdizadeh, A., additional, Mojica, T., additional, Okun, M., additional, Orgill, D., additional, Pallack, L., additional, Parks-Miller, A., additional, Prens, E.P., additional, Randell, S., additional, Rogers, C., additional, Rosen, C.F., additional, Choon, S.E., additional, van der Zee, H.H., additional, Christensen, R., additional, and Jemec, G.B.E., additional
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- 2018
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29. Towards global consensus on core outcomes for hidradenitis suppurativa research: an update from the HISTORIC consensus meetings I and II
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Thorlacius, L., primary, Garg, A., additional, Ingram, J.R., additional, Villumsen, B., additional, Theut Rii, P., additional, Gottlieb, A.B., additional, Merola, J.F., additional, Dellavalle, R., additional, Ardon, C., additional, Baba, R., additional, Bechara, F.G., additional, Cohen, A.D., additional, Daham, N., additional, Davis, M., additional, Emtestam, L., additional, Fernández-Peñas, P., additional, Filippelli, M., additional, Gibbons, A., additional, Grant, T., additional, Guilbault, S., additional, Gulliver, S., additional, Harris, C., additional, Harvent, C., additional, Houston, K., additional, Kirby, J.S., additional, Matusiak, L., additional, Mehdizadeh, A., additional, Mojica, T., additional, Okun, M., additional, Orgill, D., additional, Pallack, L., additional, Parks-Miller, A., additional, Prens, E.P., additional, Randell, S., additional, Rogers, C., additional, Rosen, C.F., additional, Choon, S.E., additional, van der Zee, H.H., additional, Christensen, R., additional, and Jemec, G.B.E., additional
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- 2018
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30. Low and high body mass index in hidradenitis suppurativa patients-different subtypes?
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Theut Riis, P, Saunte, D M, Benhadou, F, Del Marmol, V, Guillem, P, El-Domyati, M, Abdel-Wahab, H, Antoniou, C, Dessinioti, C, Gürer, M A, Beksaç, B, Szepietowski, J C, Matusiak, L, Emtestam, L, Lapins, J, Riad, H, Doss, N, Massa, A F, Hamzavi, I, Nicholson, C, Dolenc-Voljc, M, Kim, K H, Ohn, J, Zouboulis, C C, Karagiannidis, I, Mokos, Z B, Durinec, P, Jemec, G B E, Theut Riis, P, Saunte, D M, Benhadou, F, Del Marmol, V, Guillem, P, El-Domyati, M, Abdel-Wahab, H, Antoniou, C, Dessinioti, C, Gürer, M A, Beksaç, B, Szepietowski, J C, Matusiak, L, Emtestam, L, Lapins, J, Riad, H, Doss, N, Massa, A F, Hamzavi, I, Nicholson, C, Dolenc-Voljc, M, Kim, K H, Ohn, J, Zouboulis, C C, Karagiannidis, I, Mokos, Z B, Durinec, P, and Jemec, G B E
- Abstract
INTRODUCTION: Overweight is a well-established risk factor for hidradenitis suppurativa (HS). In this cross-sectional study, we compare HS patients with a high body mass index (BMI) with HS patients with a low BMI to investigate differences in disease characteristics.MATERIALS AND METHOD: Patients were recruited from 17 dermatological centres from four continents. A total of 246 patients with a BMI below 25 were compared to 205 patients with a BMI of above 35.RESULTS: Patients with a high BMI suffered more severe disease (Hurley, physician global assessment, number of areas affected and patient-reported severity (PRS), P < 0.001 for all). There was no difference in smoking (P = 0.783) nor in family history (P = 0.088). In both low and high BMI patients, early onset of HS was a predictor of positive family history (P < 0.001, for each). For low BMI patients, an increase in BMI significantly increased PRS (P < 0.001). For patients with a high BMI, number of pack-years significantly increased PRS (P = 0.001). Cluster analysis of eruption patterns was location specific for low BMI patients but severity specific for high BMI patients.DISCUSSION: Patients with a low and high BMI could represent two clinically different subtypes. We suggest a non-linear relationship between BMI and impact of HS. As patients go from a low BMI patient to a high BMI patient (or from high to low), eruption patterns and risk factors may change.
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- 2018
31. Towards global consensus on core outcomes for hidradenitis suppurativa research:an update from the HISTORIC consensus meetings I and II
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Thorlacius, L., Garg, A., Ingram, J. R., Villumsen, B., Theut Riis, P., Gottlieb, A. B., Merola, J. F., Dellavalle, R., Ardon, C., Baba, R., Bechara, F. G., Cohen, A. D., Daham, N., Davis, M., Emtestam, L., Fernández-Peñas, P., Filippelli, M., Gibbons, A., Grant, T., Guilbault, S., Gulliver, S., Harris, C., Harvent, C., Houston, K., Kirby, J. S., Matusiak, L., Mehdizadeh, A., Mojica, T., Okun, M., Orgill, D., Pallack, L., Parks-Miller, A., Prens, E. P., Randell, S., Rogers, C., Rosen, C. F., Choon, S. E., van der Zee, H. H., Christensen, R., Jemec, G. B.E., Thorlacius, L., Garg, A., Ingram, J. R., Villumsen, B., Theut Riis, P., Gottlieb, A. B., Merola, J. F., Dellavalle, R., Ardon, C., Baba, R., Bechara, F. G., Cohen, A. D., Daham, N., Davis, M., Emtestam, L., Fernández-Peñas, P., Filippelli, M., Gibbons, A., Grant, T., Guilbault, S., Gulliver, S., Harris, C., Harvent, C., Houston, K., Kirby, J. S., Matusiak, L., Mehdizadeh, A., Mojica, T., Okun, M., Orgill, D., Pallack, L., Parks-Miller, A., Prens, E. P., Randell, S., Rogers, C., Rosen, C. F., Choon, S. E., van der Zee, H. H., Christensen, R., and Jemec, G. B.E.
- Abstract
Background: A core outcomes set (COS) is an agreed minimum set of outcomes that should be measured and reported in all clinical trials for a specific condition. Hidradenitis suppurativa (HS) has no agreed-upon COS. A central aspect in the COS development process is to identify a set of candidate outcome domains from a long list of items. Our long list had been developed from patient interviews, a systematic review of the literature and a healthcare professional survey, and initial votes had been cast in two e-Delphi surveys. In this manuscript, we describe two in-person consensus meetings of Delphi participants designed to ensure an inclusive approach to generation of domains from related items. Objectives: To consider which items from a long list of candidate items to exclude and which to cluster into outcome domains. Methods: The study used an international and multistakeholder approach, involving patients, dermatologists, surgeons, the pharmaceutical industry and medical regulators. The study format was a combination of formal presentations, small group work based on nominal group theory and a subsequent online confirmation survey. Results: Forty-one individuals from 13 countries and four continents participated. Nine items were excluded and there was consensus to propose seven domains: disease course, physical signs, HS-specific quality of life, satisfaction, symptoms, pain and global assessments. Conclusions: The HISTORIC consensus meetings I and II will be followed by further e-Delphi rounds to finalize the core domain set, building on the work of the in-person consensus meetings.
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- 2018
32. Development and validation of the International Hidradenitis Suppurativa Severity Score System (IHS4), a novel dynamic scoring system to assess HS severity
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Zouboulis, C. C., Tzellos, T., Kyrgidis, A., Jemec, G. B. E., Bechara, F. G., Giamarellos-Bourboulis, E. J., Ingram, J. R., Kanni, T., Karagiannidis, I., Martorell, A., Matusiak, L., Pinter, A., Prens, E. P., Presser, D., Schneider-Burrus, S., von Stebut, E., Szepietowski, J. C., van der Zee, H. H., Wilden, S. M., Sabat, R., Sinclair, R., Vekic, D., de Haes, P., del Marmol, V., Alavi, A., Gulliver, W., Nassif, A., Nikolakis, G., Podda, M., Antoniou, C., Delli, F. S., Dessinioti, C., Patsatsi, A., Trigoni, A. P., Zisimou, C., Bettoli, V., Garcovich, Simone, Boer, J., Horvath, B., Ingvarsson, G., Puig, L., Hunger, R. E., Emtestam, L., Danby, F. W., Kimball, A. B., and Dermatology
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Adult ,Male ,Multivariate statistics ,medicine.medical_specialty ,Consensus ,Dermatology ,Logistic regression ,Severity of Illness Index ,030207 dermatology & venereal diseases ,03 medical and health sciences ,0302 clinical medicine ,Internal medicine ,medicine ,Humans ,Hidradenitis suppurativa ,Prospective Studies ,610 Medicine & health ,Prospective cohort study ,Receiver operating characteristic ,business.industry ,Odds ratio ,Dermatology Life Quality Index ,medicine.disease ,Hidradenitis Suppurativa ,Surgery ,030220 oncology & carcinogenesis ,Quality of Life ,Female ,Settore MED/35 - MALATTIE CUTANEE E VENEREE ,business ,Kappa - Abstract
Background A validated tool for the dynamic severity assessment of hidradenitis suppurativa (HS) is lacking. The aim of this study was to develop and validate such a novel scoring system. Methods A Delphi voting procedure was conducted among the members of the European Hidradenitis Suppurativa Foundation (EHSF) to achieve consensus towards an initial HS Severity Score System (HS4). Strengths and weaknesses of HS4 were examined by a multicenter prospective study. Multivariate logistic regression, discriminant analysis and receiver operating characteristic curves and examination for correlation (Spearman's rho) and agreement (Cohen's kappa) with existing scores were engaged to recognize the variables for a new International HS Severity Scoring System (IHS4) that was established by a 2nd Delphi round. Results Consensus HS4 was based on the number of skin lesions, the number of skin areas involved and the Dermatology Life Quality Index and was evaluated by a sample of 236 patients from 11 centers. Subsequently, a multivariate regression model calculated adjusted odds ratios for several clinical signs. Nodules, abscesses and draining tunnels resulted as the scoring variables. Three candidate scores were presented to the 2nd Delphi round. The resulting IHS4 score is calculated by the number of nodules (multiplied by 1) + the number of abscesses (multiplied by 2) + the number of draining tunnels (multiplied by 4). A total score of 3 or less signifies mild, 4-10 signifies moderate and 11 or higher signifies severe disease. Cohen's kappa was fair (κ=0.317) compared with Hurley classification and moderate (κ=0.493) compared with Expert Opinion. Correlation was good (rho>0.6) with Hurley classification, Expert Opinion, Physician's Global Assessment and Modified Sartorius score and moderate for Dermatology Life Quality Index (rho=0.356). Conclusion The novel IHS4 is a validated tool to dynamically assess HS severity and can be used both in real-life and the clinical trials setting.
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- 2017
33. Low and high body mass index in hidradenitis suppurativa patients—different subtypes?
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Theut Riis, P., primary, Saunte, D.M., additional, Benhadou, F., additional, del Marmol, V., additional, Guillem, P., additional, El‐Domyati, M., additional, Abdel‐Wahab, H., additional, Antoniou, C., additional, Dessinioti, C., additional, Gürer, M.A., additional, Beksaç, B., additional, Szepietowski, J.C., additional, Matusiak, L., additional, Emtestam, L., additional, Lapins, J., additional, Riad, H., additional, Doss, N., additional, Massa, A.F., additional, Hamzavi, I., additional, Nicholson, C., additional, Dolenc‐Voljc, M., additional, Kim, K.H., additional, Ohn, J., additional, Zouboulis, C.C., additional, Karagiannidis, I., additional, Mokos, Z.B., additional, Durinec, P., additional, and Jemec, G.B.E., additional
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- 2017
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34. Diagnostic delay in hidradenitis suppurativa is a global problem
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Saunte, D.M. Boer, J. Stratigos, A. Szepietowski, J.C. Hamzavi, I. Kim, K.H. Zarchi, K. Antoniou, C. Matusiak, L. Lim, H.W. Williams, M. Kwon, H.H. Gürer, M.A. Mammadova, F. Kaminsky, A. Prens, E. Van Der Zee, H.H. Bettoli, V. Zauli, S. Hafner, J. Lauchli, S. French, L.E. Riad, H. El-Domyati, M. Abdel-Wahab, H. Kirby, B. Kelly, G. Calderon, P. Del Marmol, V. Benhadou, F. Revuz, J. Zouboulis, C.C. Karagiannidis, I. Sartorius, K. Hagströmer, L. McMeniman, E. Ong, N. Dolenc-Voljc, M. Mokos, Z.B. Borradori, L. Hunger, R.E. Sladden, C. Scheinfeld, N. Moftah, N. Emtestam, L. Lapins, J. Doss, N. Kurokawa, I. Jemec, G.B.E.
- Published
- 2015
35. Diagnostic delay in hidradenitis suppurativa is a global problem
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Saunte, D M, Boer, J, Stratigos, A, Szepietowski, J C, Hamzavi, I, Kim, K H, Zarchi, K, Antoniou, C, Matusiak, L, Lim, H W, Williams, M, Kwon, H H, Gürer, M A, Mammadova, F, Kaminsky, A, Prens, E, van der Zee, H H, Bettoli, V, Zauli, S, Hafner, J, Lauchli, S, French, L E, Riad, H, El-Domyati, M, Abdel-Wahab, H, Kirby, B, Kelly, G, Calderon, P, del Marmol, V, Benhadou, F, Revuz, J, Zouboulis, C C, Karagiannidis, I, Sartorius, K, Hagströmer, L, McMeniman, E, Ong, N, Dolenc-Voljc, M, Mokos, Z B, Borradori, L, Hunger, R E, Sladden, C, Scheinfeld, N, Moftah, N, Emtestam, L, Lapins, J, Doss, N, Kurokawa, I, Jemec, G B E, Saunte, D M, Boer, J, Stratigos, A, Szepietowski, J C, Hamzavi, I, Kim, K H, Zarchi, K, Antoniou, C, Matusiak, L, Lim, H W, Williams, M, Kwon, H H, Gürer, M A, Mammadova, F, Kaminsky, A, Prens, E, van der Zee, H H, Bettoli, V, Zauli, S, Hafner, J, Lauchli, S, French, L E, Riad, H, El-Domyati, M, Abdel-Wahab, H, Kirby, B, Kelly, G, Calderon, P, del Marmol, V, Benhadou, F, Revuz, J, Zouboulis, C C, Karagiannidis, I, Sartorius, K, Hagströmer, L, McMeniman, E, Ong, N, Dolenc-Voljc, M, Mokos, Z B, Borradori, L, Hunger, R E, Sladden, C, Scheinfeld, N, Moftah, N, Emtestam, L, Lapins, J, Doss, N, Kurokawa, I, and Jemec, G B E
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- 2015
36. Spending on Hepatitis C Antivirals in the United States, 2008-2014
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Suda, K.J., primary, Hunkler, R.J., additional, Matusiak, L., additional, Vermeulen, L., additional, and Schumock, G., additional
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- 2015
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37. Psychosocial morbidity in psoriasis: The preliminary results of a cross sectional study
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Szcześniak, D., primary, Matusiak, L., additional, and Rymaszewska, J., additional
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- 2013
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38. PGI36 - Spending on Hepatitis C Antivirals in the United States, 2008-2014
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Suda, K.J., Hunkler, R.J., Matusiak, L., Vermeulen, L., and Schumock, G.
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- 2015
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39. Increased Serum Tumour Necrosis Factor- in Hidradenitis Suppurativa Patients: Is There a Basis for Treatment with Anti-Tumour Necrosis Factor- Agents?
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Matusiak, L, primary, Bieniek, A, additional, and Szepietowski, JC, additional
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- 2009
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40. What causes hidradenitis suppurativa ?—15 years after
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Wayne Wpf Gulliver, Antonio Martorell, Hessel H. van der Zee, Aude Nassif, Qiang Ju, Yildiz Hayran, Elena Nikiphorou, Łukasz Matusiak, Farida Benhadou, John R. Ingram, Philippe Guillem, Angel As Byrd, Marcos Ma González-López, Gabriella Fabbrocini, Christos C. Zouboulis, Ralf Paus, Benjamin Perin, Iltefat H. Hamzavi, Nisha Ns Chandran, Joslyn S. Kirby, Evangelos J. Giamarellos-Bourboulis, Angelo V. Marzano, John Jw Frew, Alexa Ab Kimball, Andre Nogueira da Costa, Gregor B.E. Jemec, Martin M. Okun, Hideki Fujita, Maria Mp Konstantinou, Jacek C Szepietowski, Thrasyvoulos Tzellos, Lauren Lav Orenstein, Michelle Ma Lowes, Till Ta Röhn, Andrea Szegedi, Baoxi Wang, José C. Pascual, Robert Re Hunger, Errol P. Prens, Georgios Nikolakis, Amanda S. MacLeod, Barbara Horváth, Sophie Hue, Universidad de Cantabria, Dermatology, Zouboulis, C. C., Benhadou, F., Byrd, A. S., Chandran, N. S., Giamarellos-Bourboulis, E. J., Fabbrocini, G., Frew, J. W., Fujita, H., Gonzalez-Lopez, M. A., Guillem, P., Gulliver, W. P. F., Hamzavi, I., Hayran, Y., Horvath, B., Hue, S., Hunger, R. E., Ingram, J. R., Jemec, G. B. E., Ju, Q., Kimball, A. B., Kirby, J. S., Konstantinou, M. P., Lowes, M. A., Macleod, A. S., Martorell, A., Marzano, A. V., Matusiak, L., Nassif, A., Nikiphorou, E., Nikolakis, G., Nogueira da Costa, A., Okun, M. M., Orenstein, L. A. V., Pascual, J. C., Paus, R., Perin, B., Prens, E. P., Rohn, T. A., Szegedi, A., Szepietowski, J. C., Tzellos, T., Wang, B., and van der Zee, H. H.
- Subjects
0301 basic medicine ,T-Lymphocytes ,Autoimmunity ,Biochemistry ,030207 dermatology & venereal diseases ,0302 clinical medicine ,Risk Factors ,Hidradenitis suppurativa ,610 Medicine & health ,B-Lymphocytes ,INSULIN-RESISTANCE ,hair follicle ,pathogenesis ,Smoking ,Bacterial Infections ,Sciences bio-médicales et agricoles ,Experimental research ,Phenotype ,NCSTN MUTATIONS ,PYODERMA-GANGRENOSUM ,Cholinergic system ,Cytokines ,ALOPECIA-AREATA ,ELEVATED LEVELS ,CHOLINERGIC SYSTEM ,medicine.medical_specialty ,Genotype ,Pain ,Complement C5a ,Dermatology ,03 medical and health sciences ,ACNE INVERSA ,medicine ,BRONCHIAL EPITHELIAL-CELLS ,Humans ,Molecular Biology ,business.industry ,Pruritus ,Inflammatory skin disease ,AUTOINFLAMMATORY SYNDROME ,hidradenitis suppurativa ,The Renaissance ,medicine.disease ,inflammatory skin disease ,inflammatory skin diseases ,030104 developmental biology ,Mutation ,acne inversa ,Transcriptome ,business ,SKIN - Abstract
The 14 authors of the first review article on hidradenitis suppurativa (HS) pathogenesis published 2008 in EXPERIMENTAL DERMATOLOGY cumulating from the 1st International Hidradenitis Suppurativa Research Symposium held March 30-April 2, 2006 in Dessau, Germany with 33 participants were prophetic when they wrote "Hopefully, this heralds a welcome new tradition: to get to the molecular heart of HS pathogenesis, which can only be achieved by a renaissance of solid basic HS research, as the key to developing more effective HS therapy." (Kurzen et al. What causes hidradenitis suppurativa? Exp Dermatol 2008;17:455). Fifteen years later, there is no doubt that the desired renaissance of solid basic HS research is progressing with rapid steps and that HS has developed deep roots among inflammatory diseases in Dermatology and beyond, recognized as "the only inflammatory skin disease than can be healed". This anniversary article of 43 research-performing authors from all around the globe in the official journal of the European Hidradenitis Suppurativa Foundation e.V. (EHSF e.V.) and the Hidradenitis Suppurativa Foundation, Inc (HSF USA) summarizes the evidence of the intense HS clinical and experimental research during the last 15 years in all aspects of the disease and provides information of the developments to come in the near future., info:eu-repo/semantics/published
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- 2020
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41. Projecting future drug expenditures -- 2010.
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Hoffman JM, Doloresco F, Vermeulen LC, Shah ND, Matusiak L, Hunkler RJ, and Schumock GT
- Abstract
Purpose. Drug expenditure trends in 2008 and 2009, projected drug expenditures for 2010, and factors likely to influence drug expenditures are discussed. Summary. Various factors are likely to influence drug expenditures in 2010, including drugs in development, the diffusion of new drugs, generic drugs, health care reform, drug safety concerns, and comparative effectiveness research. The increasing availability of important generic drugs continues to moderate growth in drug expenditures. Health care reform initiatives, including the potential for biosimilars legislation, will influence drug expenditures in all settings. From 2007 to 2008, total U.S. drug expenditures increased by 1.8%, with total spending rising from $279.6 billion to $284.7 billion. Growth in drug expenditures in clinics declined to the lowest level in a decade, a 1.0% increase from 2007 to 2008. Hospital drug expenditures increased at a moderate rate of only 2.1% from 2007 to 2008; through the first nine months of 2009, hospital drug expenditures increased by 3.0% compared with the same period in 2008. Conclusion. In 2010, we project a 3-5% increase in drug expenditures in outpatient settings, a 6-8% increase in expenditures for clinic-administered drugs, and a 2-4% increase in hospital drug expenditures. [ABSTRACT FROM AUTHOR]
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- 2010
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42. Projecting future drug expenditures -- 2009.
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Hoffman JM, Shah ND, Vermeulen LC, Doloresco F, Martin PK, Blake S, Matusiak L, Hunkler RJ, and Schumock GT
- Abstract
PURPOSE: Drug expenditure trends in 2007 and 2008, projected drug expenditures for 2009, and factors likely to influence drug expenditures are discussed. SUMMARY: Various factors are likely to influence drug expenditures in 2009, including drugs in development, the diffusion of new drugs, drug safety concerns, generic drugs, Medicare Part D, and changes in the drug supply chain. The increasing availability of important generic drugs and drug safety concerns continue to moderate growth in drug expenditures. The drug supply chain remains dynamic and may influence drug expenditures, particularly in specialized therapeutic areas. Initial data suggest that the Medicare Part D benefit has influenced drug expenditures, but the ultimate impact of the benefit on drug expenditures remains unclear. From 2006 to 2007, total U.S. drug expenditures increased by 4.0%, with total spending rising from $276 billion to $287 billion. Drug expenditures in clinics continue to grow more rapidly than in other settings, with a 9.9% increase from 2006 to 2007. Hospital drug expenditures increased at a moderate rate of only 1.6% from 2006 to 2007; through the first nine months of 2008, hospital drug expenditures increased by only 2.8% compared with the same period in 2007. CONCLUSION: In 2009, we project a 0-2% increase in drug expenditures in outpatient settings, a 1-3% increase in expenditures for clinic-administered drugs, and a 1-3% increase in hospital drug expenditures. [ABSTRACT FROM AUTHOR]
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- 2009
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43. Profound Sexual Dysfunction Among Patients with Hidradenitis Suppurativa: A Cross-sectional Study.
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Krajewski PK, Strobel A, Schultheis M, Staubach P, Grabbe S, Hennig K, Matusiak L, von Stebut E, Garcovich S, Bayer H, Heise M, Kirschner U, Nikolakis G, and Szepietowski JC
- Abstract
Introduction: Sexual health, a critical aspect of overall well-being, is often compromised in individuals with chronic disorders. Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition that mainly affects intertriginous areas, potentially impacting sexual health as a result of its specific symptoms and psychosocial burden., Methods: This cross-sectional study utilized data from the EpiCAi project, focusing on 199 patients with HS. Participants completed digital questionnaires assessing sexual health via sex-specific instruments: the Female Sexual Function Index (FSFI) for women and the International Index of Erectile Function (IIEF) for men, alongside different psychosocial scales. The disease severity was assessed using the Hurley stage and the Lesion Identification Scheme for Acne Inversa (LISAI)., Results: The majority of the participants reported impaired sexual health, with significant clinical sexual dysfunctions noted in 71.8% of women (FSFI score < 26) and erectile dysfunction in 63.8% of men. Sexual dysfunction was associated with several factors, including age, and marital status. Psychosocial factors, notably depression and quality of life, showed strong correlations with sexual health outcomes. Notably, women over 40 and those treated with biologics reported more severe dysfunction, while among men, employment status significantly influenced sexual health., Conclusions: HS profoundly affects the sexual health of both male and female patients, with significant impacts on their quality of life and psychological well-being. The findings underscore the necessity for healthcare providers to address sexual health proactively in the management of HS, considering both physical symptoms and psychosocial impacts. This holistic approach is essential for improving patient outcomes and overall quality of life., Trial Registration: German Register for Clinical Trials, identifier DRKS00025315., (© 2024. The Author(s).)
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- 2024
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44. Real-world effectiveness and safety of the LAight-therapy in patients with hidradenitis suppurativa.
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Strobel A, Schultheis M, Staubach P, Grabbe S, Mann C, Hennig K, Szepietowski JC, Matusiak L, Krajewski P, von Stebut E, Garcovich S, Bayer H, Heise M, Podda M, Kirschner U, and Nikolakis G
- Subjects
- Humans, Male, Female, Adult, Treatment Outcome, Patient Satisfaction, Severity of Illness Index, Middle Aged, Pain Measurement, Hidradenitis Suppurativa therapy, Quality of Life
- Abstract
Background and Objectives: Hidradenitis suppurativa (HS)/Acne inversa (Ai) is a chronic debilitating disease with limited therapy options. The device-based LAight therapy was approved in Europe in 2017. The aim of this study was to evaluate the effect of real-world care with at least one treatment with LAight therapy on disease activity and burden in 3,437 patients., Patients and Methods: Patients were included in the analysis if they had a diagnosis of HS and received at least one treatment. The endpoints Hidradenitis Suppurativa Severity Score System (IHS4), pain on the numeric rating scale (pain-NRS) and Dermatology Life Quality Index (DLQI) were analyzed using a linear mixed model for repeated measures (MMRM) over 26 weeks of care with LAight therapy. Furthermore, responder rates were calculated for all endpoints, and the therapy's safety profile and patient satisfaction were thoroughly examined., Results: A significant decrease in IHS4, pain-NRS, and DLQI was achieved during 26 weeks of care with LAight. The BMI at baseline had a significant negative effect on therapy response for pain-NRS and DLQI., Conclusions: This study confirms that LAight therapy leads to satisfactory disease control in all stages of severity and is a valuable addition to the therapeutic repertoire of HS., (© 2024 The Authors. Journal der Deutschen Dermatologischen Gesellschaft published by Wiley‐VCH GmbH on behalf of Deutsche Dermatologische Gesellschaft.)
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- 2024
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45. Hidradenitis Suppurativa Is Associated with Severe Sexual Impairment.
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Krajewski PK, Strobel A, Schultheis M, Staubach P, Grabbe S, Hennig K, Matusiak L, von Stebut E, Garcovich S, Bayer H, Heise M, Kirschner U, Nikolakis G, and Szepietowski JC
- Subjects
- Female, Humans, Quality of Life, Cross-Sectional Studies, Skin, Pain etiology, Severity of Illness Index, Hidradenitis Suppurativa complications, Hidradenitis Suppurativa epidemiology, Hidradenitis Suppurativa psychology, Sexual Dysfunction, Physiological epidemiology, Sexual Dysfunction, Physiological etiology
- Abstract
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 (β = 0.25), the number of active lesions, the affected areas (β = 0.14), and psychosocial aspects, including low quality of life (β = 0.404), stigmatization (β = 0.411), depression (β = 0.413), and anxiety (β = 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., (© 2024 S. Karger AG, Basel.)
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- 2024
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46. Females May Have Less Severe Acne, but They Suffer More: A Prospective Cross-Sectional Study on Psychosocial Consequences in 104 Consecutive Polish Acne Patients.
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Szepietowska M, Stefaniak AA, Krajewski PK, and Matusiak L
- Abstract
Acne is a common skin condition affecting both adolescents and adults, and it can profoundly impact patients' quality of life and mental well-being. This prospective cross-sectional study aims to explore the differences in psychosocial aspects between male and female acne patients in Poland. A total of 104 consecutive acne patients were included in this study. Clinical severity, patients' quality of life, stigmatization levels, and psychiatric disturbances were evaluated using the following instruments: Investigator Global Assessment (IGA), Dermatology Life Quality Index (DLQI), Cardiff Acne Disability Index (CADI), 6-Item Stigmatization Scale (6-ISS), and Hospital Anxiety and Depression Scale (HADS). This study found that female patients exhibited significantly less severe acne and experienced significantly decreased quality of life and increased levels of stigmatization. Furthermore, anxiety levels among female patients exceeded those observed in their male counterparts. Notably, no disparities in the severity of depression were observed between the two gender groups. Correlations were discerned among all psychosocial parameters in the entire study cohort and in the female subgroup, while such correlations were not uniformly observed among male participants. This study underscores the importance of considering psychosocial aspects and implementing routine measurements in the management of acne to improve patients' well-being.
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- 2023
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47. Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice: A HiSTORIC Consensus Statement.
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Mastacouris N, Tannenbaum R, Strunk A, Koptyev J, Aarts P, Alhusayen R, Bechara FG, Benhadou F, Bettoli V, Brassard A, Brown D, Choon SE, Coutts P, da Silva DLF, Daveluy S, Dellavalle RP, Del Marmol V, Emtestam L, Gebauer K, George R, Giamarellos-Bourboulis EJ, Goldfarb N, Hamzavi I, Hazen PG, Horváth B, Hsiao J, Ingram JR, Jemec GBE, Kirby JS, Lowes MA, Marzano AV, Matusiak L, Naik HB, Okun MM, Oon HH, Orenstein LAV, Paek SY, Pascual JC, Fernandez-Peñas P, Resnik BI, Sayed CJ, Thorlacius L, van der Zee HH, van Straalen KR, and Garg A
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- Female, Humans, Male, Consensus, Delphi Technique, Outcome Assessment, Health Care, Patient Reported Outcome Measures, Quality of Life, Adult, Middle Aged, Hidradenitis Suppurativa diagnosis, Hidradenitis Suppurativa therapy
- Abstract
Importance: Although several clinician- and patient-reported outcome measures have been developed for trials in hidradenitis suppurativa (HS), there is currently no consensus on which measures are best suited for use in clinical practice. Identifying validated and feasible measures applicable to the practice setting has the potential to optimize treatment strategies and generate generalizable evidence that may inform treatment guidelines., Objective: To establish consensus on a core set of clinician- and patient-reported outcome measures recommended for use in clinical practice and to establish the appropriate interval within which these measures should be applied., Evidence Review: Clinician- and patient-reported HS measures and studies describing their psychometric properties were identified through literature reviews. Identified measures comprised an item reduction survey and subsequent electronic Delphi (e-Delphi) consensus rounds. In each consensus round, a summary of outcome measure components and scoring methods was provided to participants. Experts were provided with feasibility characteristics of clinician measures to aid selection. Consensus was achieved if at least 67% of respondents agreed with use of a measure in clinical practice., Findings: Among HS experts, response rates for item reduction, e-Delphi round 1, and e-Delphi round 2 surveys were 76.4% (42 of 55), 90.5% (38 of 42), and 92.9% (39 of 42), respectively; among patient research partners (PRPs), response rates were 70.8% (17 of 24), 100% (17 of 17), and 82.4% (14 of 17), respectively. The majority of experts across rounds were practicing dermatologists with 18 to 19 years of clinical experience. In the final e-Delphi round, most PRPs were female (12 [85.7%] vs 2 males [11.8%]) and aged 30 to 49 years. In the final e-Delphi round, HS experts and PRPs agreed with the use of the HS Investigator Global Assessment (28 [71.8%]) and HS Quality of Life score (13 [92.9%]), respectively. The most expert-preferred assessment interval in which to apply these measures was 3 months (27 [69.2%])., Conclusions and Relevance: An international group of HS experts and PRPs achieved consensus on a core set of HS measures suitable for use in clinical practice. Consistent use of these measures may lead to more accurate assessments of HS disease activity and life outcomes, facilitating shared treatment decision-making in the practice setting.
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- 2023
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48. Factors associated with disease-specific life impact in patients with hidradenitis suppurativa: results from the Global VOICE project.
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Garg A, Rawal S, Akilov O, Alavi A, Ardon C, Bechara FG, Cohen AD, Cohen SR, Daveluy S, Del Marmol V, Delage M, Esmann S, Fisher S, Giamarellos-Bourboulis EJ, Glowaczewska A, Goldfarb N, Brant EG, Grimstad Ø, Guilbault S, Hamzavi I, Hughes R, Ingram JR, Jemec GBE, Ju Q, Kappe N, Kirby B, Kirby JS, Lowes MA, Matusiak L, Micha S, Micheletti RG, Miller AP, Moseng D, Naik HB, Nassif A, Nikolakis G, Paek SY, Pascual JC, Prens E, Resnik B, Riad H, Sayed C, Smith SD, Soliman Y, Szepietowski JC, Tan J, Thorlacius L, Tzellos T, van der Zee HH, Villumsen B, Wang L, Zouboulis CC, and Strunk A
- Subjects
- Humans, Quality of Life, Hidradenitis Suppurativa complications
- Abstract
Competing Interests: Conflicts of interest A list of conflicts of interest can be found in Appendix S1 (see Supporting Information).
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- 2023
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49. External Validation of the IHS4-55 in a European Antibiotic-Treated Hidradenitis Suppurativa Cohort.
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van Straalen KR, Tzellos T, Alavi A, Benhadou F, Cuenca-Barrales C, Daxhelet M, Daoud M, Efthymiou O, Giamarellos-Bourboulis EJ, Guillem P, Gulliver W, Jemec GBE, Katoulis A, Koenig A, Lazaridou E, Lowes MA, Marzano AV, Matusiak L, Molina-Leyva A, Moltrasio C, Pinter A, Potenza C, Prens EP, Romaní J, Saunte DM, Sayed C, Skroza N, Stergianou D, Szepietowski JC, Trigoni A, Vilarrasa E, Kyrgidis A, Zouboulis CC, and van der Zee HH
- Subjects
- Humans, Anti-Bacterial Agents therapeutic use, Prospective Studies, Abscess, Severity of Illness Index, Pruritus drug therapy, Pain drug therapy, Pain etiology, Treatment Outcome, Hidradenitis Suppurativa complications, Hidradenitis Suppurativa drug therapy
- Abstract
Background: Previously, a new dichotomous outcome was developed, calculated as 55% reduction in the International Hidradenitis Suppurativa 4 (IHS4-55) score. It was validated in datasets of adalimumab and placebo-treated HS patients. External validation is an important aspect of clinical outcomes., Objectives: We aimed to externally validate the novel dichotomous IHS4-55 in a non-biologic treated dataset of HS patients., Methods: Data from a previously published European-wide prospective clinical study of antibiotic treatment of HS patients were used to assess the association of IHS4-55 achievement with individual reduction in inflammatory nodules, abscesses, and draining tunnels. Moreover, the associations between IHS4-55 positivity and achievement of the minimal clinically important differences (MCIDs) for Dermatology Life Quality Index (DLQI), Numerical Rating Scale (NRS) Pain, and NRS Pruritus were analyzed., Results: Data were obtained from 283 individual patients, of which 36.4% (103/283) were treated with clindamycin and rifampicin and 63.6% (180/283) with tetracyclines for 12 weeks. Achievers of the IHS4-55 demonstrated a significant reduction the counts of inflammatory nodules, abscesses, and draining tunnels (all p < 0.001). Additionally, IHS4-55 achievers had an odds ratio for achieving the MCID of DLQI, NRS Pain, and NRS Pruritus of 2.16 (95% CI 1.28-3.65, p < 0.01), 1.79 (95% CI 1.10-2.91, p < 0.05), and 1.95 (95% CI 1.18-3.22, p < 0.01), respectively., Conclusions: This study shows the external validity of the novel IHS4-55 by demonstrating a significant association between IHS4-55 achievement and a reduction in inflammatory lesion counts as well as achievement of MCIDs for DLQI, NRS Pain, and NRS Pruritus in an antibiotic-treated cohort. These findings support the use of the IHS4-55 as a novel primary outcome measure in clinical trials., (© 2023 S. Karger AG, Basel.)
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- 2023
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50. Sexual Dysfunction and Quality of Life in Patients with Hidradenitis Suppurativa and Their Partners.
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Cuenca-Barrales C, Montero-Vilchez T, Krajewski PK, Szepietowski JC, Matusiak L, Arias-Santiago S, and Molina-Leyva A
- Subjects
- Humans, Male, Female, Adolescent, Quality of Life, Cross-Sectional Studies, Sexual Partners, Erectile Dysfunction, Hidradenitis Suppurativa epidemiology, Sexual Dysfunction, Physiological etiology
- Abstract
Hidradenitis suppurativa (HS) is a chronic skin disease that profoundly affects patients' quality of life (QoL) and sexuality. Few data are available on the impact of HS on patients' partners. We aimed to explore the QoL and sexual function of patients' partners and the factors associated with their impairment and to compare the QoL and sexual function of single patients and those in a stable relationship. We conducted a cross-sectional study at Hospital Universitario Virgen de las Nieves (Granada, Spain) and at the Wroclaw Medical University (Wroclaw, Poland). Patients over the age of 16 years attending their scheduled follow-up and their partners, if any, were included. The Dermatology Life Quality Index (DLQI) and the Family Dermatology Life Quality Index (FDLQI) were used to estimate the QoL of patients and partners, respectively. The FSFI-6 was used to determine sexual dysfunction in women and the IIEF-5 for erectile dysfunction in men. Thirty-four single patients and twenty-eight patients in a stable relationship and their partners were included. Patients had a very large impact (DLQI 12.5 ± 7.5) and their partners a moderate impact (FDLQI 10.3 ± 7.1) in their QoL due to HS. Women with HS had a high prevalence of sexual dysfunction (13/32, 40.6%) and men of erectile dysfunction (19/30, 63.3%). Male partners also had a high prevalence of erectile dysfunction (10/17, 58.8%), while only one female partner had sexual dysfunction (1/11, 9.1%). Factors related to disease severity, intensity of symptoms and body mass index were associated with poorer QoL in partners and time of disease evolution with greater erectile dysfunction in male partners. In conclusion, HS not only profoundly affects the QoL and sexuality of patients but also of their partners. Several risk factors have been identified, which should be taken into account in the holistic approach of the disease.
- Published
- 2022
- Full Text
- View/download PDF
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