Hidradenitis suppurativa burden of disease tool: Pilot testing of a disease-specific quality of life questionnaire

Pinard, Joanie; Vleugels, Ruth Ann; Joyce, Cara; Merola, Joseph F.; Patel, Mital

doi:10.1016/j.jaad.2017.08.030

Cited by 17 publications

(19 citation statements)

References 8 publications

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“…Children prefer the Likert scale over the VAS and find it easier to complete . An acknowledged limitation of the HSBOD is that it requires abstract thinking, which may be difficult for some patients …”

Section: Discussionmentioning

confidence: 99%

“…95 An acknowledged limitation of the HSBOD is that it requires abstract thinking, which may be difficult for some patients. 79 Participants of the HISTORIC initiative considered that items related to the QoL of HS patients were important to be included in the core outcome set. 10 Recommendations for treatment strategy based on HS severity and HRQoL changes, as is now standard in psoriasis, may be beneficial.…”

Section: Discussionmentioning

confidence: 99%

“…The initial validation of two HS-specific HRQoL instruments was reported. 78,79 These HS-specific instruments are described in detail below.…”

Section: Validation Of Hs-specific Qol Instrumentsmentioning

confidence: 99%

“…78 The third HS-specific HRQoL instrument, the Hidradenitis Suppurativa Burden of Disease (HSBOD), was developed based on interviews with patients (number of patients not presented) and eight dermatologists. 79 The HSBOD is a 19-item questionnaire with five domains: Symptoms and feelings, Daily activities, Leisure, Work/school and Personal relationships. Responses are on a 10-cm visual analog scale (VAS).…”

Section: Hrqol Instrumentsmentioning

confidence: 99%

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Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Chernyshov

Zouboulis

Tómas-Aragonés

et al. 2019

Acad Dermatol Venereol

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This paper is organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on Quality of Life (QoL) and Patient‐Oriented Outcomes and the EADV TF on acne, rosacea and hidradenitis suppurativa (ARHS). The purpose of this paper was to present current knowledge about QoL assessment in HS, including data on HS‐specific health‐related (HR) QoL instruments and HRQoL changes in clinical trials, and to make practical recommendations concerning the assessment of QoL in people with HS. HS results in significant quimp that is higher than in most other chronic skin diseases. HS impact in published studies was assessed predominantly (84% of studies) by the Dermatology Life Quality Index (DLQI). There is a lack of high‐quality clinical trials in HS patients where HRQoL instruments have been used as outcome measures. One double‐blind randomized placebo‐controlled trial on infliximab with low number of participants reported significantly better HRQoL improvement in the treatment group than in the placebo group. Well‐designed clinical studies in HS patients to compare different treatment methods, including surgical methods and assessing long‐term effects, are needed. Because of lack of sufficient validation, the Task Forces are not at present able to recommend existing HS‐specific HRQoL instruments for use in clinical studies. The EADV TFs recommend the dermatology‐specific DLQI questionnaire for use in HS patients. The EADV TFs encourage the further development, validation and use of other HS‐specific, dermatology‐specific and generic instruments but such use should be based on the principles presented in the previous publications of the EADV TF on QoL and Patient‐Oriented Outcomes.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“…The initial validation of two HS-specific HRQoL instruments was reported. 78,79 These HS-specific instruments are described in detail below.…”

Section: Validation Of Hs-specific Qol Instrumentsmentioning

confidence: 99%

Section: Hrqol Instrumentsmentioning

confidence: 99%

See 2 more Smart Citations

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Chernyshov

Zouboulis

Tómas-Aragonés

et al. 2019

Acad Dermatol Venereol

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“…Los cuestionarios disponibles actualmente sobre HS no son aplicables a población española hasta su traducción y validación y no se encontraban publicados en el momento del diseño y posterior recogida de datos del presente estudio. Ello explica que no se pudiera contemplar la traducción de los mismos y se optara por la realización de un cuestionario de novo 9,14,15 .…”

Section: Discussionunclassified

Desarrollo y validación preliminar del instrumento HSQoL-24 para evaluar calidad de vida en pacientes con hidradenitis supurativa

Marrón

Gómez-Barrera

Aragonés

et al. 2019

Actas Dermo-Sifiliográficas

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Principles of Measurement and Assessment in Dermatology

Finlay,

Ali

2024

Rook's Textbook of Dermatology

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This chapter describes why it is important to measure the severity of skin disease, what can and should be measured, who should do the measuring and how to interpret scores. The validation of measures is explained, including by electronic delivery. The concept of core outcomes is described, as are the clinical assessment tools used across the main inflammatory skin diseases. Many objective methods for measuring skin disease are being developed. The measurement of the impact of skin disease can be assessed by using a range of different quality of life measures, usually questionnaires, including disease specific, dermatology specific and generic measures that can also be used across medicine. Most measures are designed for use in adults, but there are separate questionnaires for use in specific age ranges such as children and adolescents. Skin disease can have a major secondary impact on the quality of life of partners and other family members: this impact is assessed by a parallel range of disease specific, dermatology specific or generic measures. There are also methods to measure the impact of skin disease on psychological health, on sexual functioning and on ability to work.

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Hidradenitis suppurativa burden of disease tool: Pilot testing of a disease-specific quality of life questionnaire

Abstract: We thank the patients who have graciously accepted to complete the surveys. Without their participation, this study would not have been possible.

Cited by 17 publications

References 8 publications

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Desarrollo y validación preliminar del instrumento HSQoL-24 para evaluar calidad de vida en pacientes con hidradenitis supurativa

Principles of Measurement and Assessment in Dermatology

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