Hidradenitis Suppurativa/Acne Inversa: Criteria for Diagnosis, Severity Assessment, Classification and Disease Evaluation

Zouboulis, Christos C.; Marmol, Véronique Del; Mrowietz, Ulrich; Prens, Errol P.; Tzellos, Thrasivoulos; Jemec, Gregor B. E.

doi:10.1159/000431175

Cited by 304 publications

(329 citation statements)

References 28 publications

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“…Hidradenitis suppurativa (HS) is a chronic, painful, and debilitating skin disease with an estimated prevalence of 0.1–4% worldwide [1, 2]. The primary lesions are inflammatory nodules that may develop into abscesses and sinus tracts with subsequent scarring, affecting flexural sites such as the axillae and groins [1, 3]. …”

Section: Introductionmentioning

confidence: 99%

Development of HiSQOL: A Hidradenitis Suppurativa-Specific Quality of Life Instrument

Thorlacius

Esmann

Miller

et al. 2019

Skin Appendage Disord

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Background: Hidradenitis suppurativa (HS) is a chronic and painful skin disease. In addition, HS lesions may be associated with pus and odour, potentially leading to significant stigma and, consequently, greatly affected quality of life (QOL). QOL is a multidimensional construct, which can be measured in various ways. However, generic or dermatologic QOL measures may not capture changes in QOL particularly affected in HS. Accordingly, patients and experts included in the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) agreed that future clinical HS trials should measure HS-specific QOL. Objectives: To develop an HS-specific QOL instrument (HiSQOL, Hidradenitis Suppurativa Quality of life). Method: The initial phases of the questionnaire development, described in this study, included item generation by patient interviews, development of a pilot questionnaire, questionnaire refinement, and pilot testing. Results: For item generation, 21 patients were interviewed individually or in focus groups. Analysis of the interviews identified 105 candidate items and, next, a pilot questionnaire was developed. Finally, item reduction and two rounds of pilot testing resulted in a 23-item questionnaire representing physical, psychological, and social QOL dimensions. Conclusions: We have comprehensively explored on HS’s possible effect on the QOL of the affected individuals and identified a 23-item HS-specific QOL questionnaire. The questionnaire proved to be feasible, acceptable, and comprehensible in the second round of pilot testing. With HiSQOL, researchers can measure HS-specific QOL in future clinical trials, potentially enabling them to discover more effective treatment options. It is envisaged, that after thorough validation in a trial setting, a streamlined version of HISQOL may also become available for clinical use in daily practice.

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Section: Introductionmentioning

confidence: 99%

Development of HiSQOL: A Hidradenitis Suppurativa-Specific Quality of Life Instrument

Thorlacius

Esmann

Miller

et al. 2019

Skin Appendage Disord

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“…Finding an efficient treatment for this debilitating chronic disorder remains a difficult task. Numerous treatments and disease associations exist [1,9,10,11,12], but individual treatment responses remain so far unforeseeable. We hope that this glossary will help develop better descriptions of HS patients and thus constitute a first step in identifying more homogenous patient groups in terms of genetic background, etiologic factors and response to treatment.…”

Section: Discussionmentioning

confidence: 99%

The ABC of Hidradenitis Suppurativa: A Validated Glossary on how to Name Lesions

et al. 2016

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Background: The precise clinical description of skin lesions observed in some patients with hidradenitis suppurativa (HS) can be extremely difficult. Objective: Establishing a validated glossary of terms allowing the best possible description of lesions observed in HS patients. Material and Methods: Five international experts of HS were to assess a series of 25 photos representing typical lesions of this disorder. For each photo, the experts were asked whether naming of the lesions was possible or not and, if yes, by using which noun. Agreement of their responses was calculated using Fleiss's kappa index. Using a Delphi strategy, photos with disagreement were discussed, and photos were reevaluated on the next day. In case of agreement on the impossibility of naming some clinical situations, new terms, to be included into the glossary, were agreed upon. Results: After the first round of photos, agreement between the experts was poor with a kappa index of only 0.33 (95% CI 0.22-0.46). After extensive discussion of cases with disagreement, the kappa index increased on day 2 to 0.75 (95% CI 0.60-0.87), allowing to conclude on good interobserver agreement on terminology. Furthermore, a few clinical situations were identified in which naming with established semantics is so far not possible. For these situations, the terms ‘multicord', ‘multipore', ‘multitunnel' and ‘retraction' were defined. Discussion: This is the first validation of clinical terms used to describe lesions in patients with HS. This should be helpful in better defining the clinical phenotypes observed in this disorder.

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“…Hidradenitis suppurativa, SH) -lėtinė, uždegiminė odos liga, pasireiškianti atsinaujinančiais skausmingais mazgais ir abscesais, besiformuojančiais sinusais, takais tarp jų, randais [1]. Dažniausiai SH prasideda pasibaigus brendimo laikotarpiui, apima plauko folikulus ir pasireiškia skausmingais, giliai odoje esančiais, uždegiminias dariniais, anatominėse apokrininių liaukų kūno vietose, dažniausiai pažastyse, kirkšnyse ar anogenitalinėse srityse [2]. Sergamumas SH Lietuvoje yra 23,5/100000 gyventojų.…”

Section: įVadasunclassified

Pirminės Sveikatos Priežiūros Specialistų Žinios Apie Supūliavusį Hidradenitą

Kazbaraitė

Liesionytė

2017

Sveikatos Mokslai

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Raktažodžiai: supūliavęs hidradenitas, šeimos gydytojai. SantraukaSupūliavęs hidradenitas (lot. Hidradenitis suppurativa, SH) -lėtinė, uždegiminė odos liga, pasireiškianti atsinaujinančiais skausmingais mazgais ir abscesais, besifomuojančiais sinusais bei takais tarp jų, randais. Tyrimo tikslas -įvertinti šeimos gydytojų žinias ir jų tikslumą apie supūliavusį hidradenitą bei žinių tikslumo priklausomybę nuo darbo stažo trukmės. Atliktas vienmomentinis tyrimas, siekiant apklausti šeimos gydytojus. Tyrimo metodas -vienmomentė anoniminė anketinė apklausa. Apklausoje dalyvavo 35 šeimos gydytojai. Tyrimui atlikti parengta 18 klausimų originali anketa, kuri sudaryta remiantis Europos dermatologų forumo ekspertų sutarimu sudarytomis ir 2015 m. patvirtintomis Europos SH gydymo gairėmis. 14-18 balų rezultatas buvo vertinamas kaip pakankamas SH žinių tikslumas, o 0 -14 balų rezultatas -kaip nepakankamos žinios apie SH. Tyrimo rezultatai -tyrime dalyvavo 35 šeimos gydytojai: 27 (77,1 proc.) moterys ir 8 (22,9 proc.) vyrai. Vidutinis darbo stažas metais 27±13,18. Gydytojų SH objektyvumo balų vidurkis 8,9±3,60. Minimalus apklaustųjų objektyvumas balais buvo 4 balai, o maksimalus -16 balų. 3 (8,6 proc.) šeimos gydytojų žinių apie SH objektyvumas buvo pakankamas. Nė vienas respondentas į anketos klausimus neatsakė 100 proc. tikslumu. Nėra statistiškai reikšmingo ryšio tarp šeimos gydytojų stažo trukmės ir SH žinių objektyvumo (p=0,615). Įvadas

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Hidradenitis Suppurativa/Acne Inversa: Criteria for Diagnosis, Severity Assessment, Classification and Disease Evaluation

Cited by 304 publications

References 28 publications

Development of HiSQOL: A Hidradenitis Suppurativa-Specific Quality of Life Instrument

Development of HiSQOL: A Hidradenitis Suppurativa-Specific Quality of Life Instrument

The ABC of Hidradenitis Suppurativa: A Validated Glossary on how to Name Lesions

Pirminės Sveikatos Priežiūros Specialistų Žinios Apie Supūliavusį Hidradenitą

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