Development and initial psychometric evaluation of patient-reported outcome questionnaires to evaluate the symptoms and impact of hidradenitis suppurativa

Kimball, Alexa B.; Sundaram, Murali; Banderas, Benjamin; Foley, Catherine; Shields, Alan L.

doi:10.1080/09546634.2017.1341614

Cited by 35 publications

(44 citation statements)

References 32 publications

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“…HS trials are progressively utilizing patient‐reported outcome (PRO) measures and it stands to reason that patients are best equipped to determine the presence and/or severity of symptoms related to a flare using a PRO measure. HS‐specific PRO scales are in development or already exist and may be useful once a definition for flare is established . Other chronic inflammatory diseases can have flares, such as rheumatoid arthritis and lupus erythematosus.…”

Section: Discussionmentioning

confidence: 99%

“…HS-specific PRO scales are in development or already exist and may be useful once a definition for flare is established. 8,9,20 Other chronic inflammatory diseases can have flares, such as rheumatoid arthritis and lupus erythematosus. The research conducted to establish definitions of flare for these conditions may serve as guidance for next steps.…”

Section: Discussionmentioning

confidence: 99%

“…[5][6][7] Concurrently with this, considerable effort has been put into developing patient-reported and clinician-reported measures for HS. [8][9][10][11] The HS core outcome set specifically recommended assessment of HS flare, although it does not recommend specific measures or perspectives, such as reported by the patient or clinician. 5 HS flare is also an important part of the lived experience of people with HS.…”

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confidence: 99%

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A narrative review of the definition of ‘flare’ in hidradenitis suppurativa

et al. 2019

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Summary Background Hidradenitis suppurativa (HS) is a chronic, inflammatory condition that can have periodic worsening or flares. Measurement of flare is important because it can inform treatment efficacy; however, it is unclear how HS flare should be defined. Objectives This study reviewed the literature for definitions of HS flare. Methods The PubMed MEDLINE online database was searched on 10 January 2018 and the search was repeated on 8 December 2018 for new publications. Titles and abstracts were screened for inclusion. Subsequently, full articles were screened for inclusion. Papers were included if the publication was a systematic review, clinical trial, cohort study, case report or series, or cross‐sectional study. Studies were excluded if they were journalistic reviews, did not discuss clinical findings of HS or did not use the words ‘flare’, ‘exacerbation’, ‘relapse’ or ‘recurrence’. Results Two hundred and seventy‐four papers were identified and 154 fulfilled the study criteria. Of these, 27 (17.5%) included the term ‘flare’ and 16 (10.4%) included the term ‘exacerbation’. Two of the 27 papers (7%) defined the term flare and both included patient report of changes in symptoms or signs. One of 16 papers (6%) defined exacerbation, which was taken as one new HS lesion. The terms ‘recurrence’ and ‘relapse’ were more apt to be defined: 13% (13 of 100) and 14% (six of 44), respectively. Conclusions The lack of a specific and measurable definition of HS flare is a barrier to assessment of this important outcome. Once a specific and measurable definition is established, validated and reliable measures of HS flare can be incorporated into future studies. What's already known about this topic? Hidradenitis suppurativa (HS) is a chronic, relapsing inflammatory skin condition. The ability to assess flares is important to people who have HS; however, it is unclear how this is defined. HS flare is one of the core outcomes in the core outcome set for HS clinical trials; however, it is unclear how this should be assessed. What does this study add? This literature review reveals the paucity of measurable definitions associated with the use of the term ‘flare’ in the HS literature. It also highlights the variation and lack of a validated and reliable measure of HS flare.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

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A narrative review of the definition of ‘flare’ in hidradenitis suppurativa

et al. 2019

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“…1 Pain visual analog scale scores and Dermatology Life Quality Index (DLQI) are valuable adjuncts and straightforward to perform in clinical settings. [1][2][3][4][5][6] In research settings, the Hidradenitis Suppurativa Clinical Response is the most validated dynamic physical measure for assessing treatment response, 2 but like the Hidradenitis Suppurativa Physician's Global Assessment and Sartorius score, it may have lower utility in the clinical setting. Patient-reported outcomes to consider include the DLQI score, pain visual analog scale, and HS-specific patient-reported outcomes (Hidradenitis Suppurativa Impact Assessment and Hidradenitis Suppurativa Symptom Assessment).…”

Section: Systems For the Grading And Classification Of Hsmentioning

confidence: 99%

North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations

Alikhan

Sayed

Alavi

et al. 2019

Journal of the American Academy of Dermatology

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264

382

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Hidradenitis suppurativa is a chronic inflammatory disorder affecting hair follicles, with profoundly negative impact on patient quality of life. Evidence informing ideal evaluation and management of patients with hidradenitis suppurativa is still sparse in many areas, but it has grown substantially in the last decade. Part I of this evidence-based guideline is presented to support health care practitioners as they select optimal management strategies, including diagnostic testing, comorbidity screening, and both complementary and procedural treatment options. Recommendations and evidence grading based on the evidence available at the time of the review are provided.

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“…Appropriate framing of duration for expected improvement is also important in design of outcome measures. Currently available patient reported outcome measures for HS include HSSA, HSIA, HS‐QoL and HiSQoL (in development). For each, methods in development and validation where available were reviewed.…”

Section: Scientific Sessionmentioning

confidence: 99%

Proceeding report of the Second Symposium on Hidradenitis Suppurativa Advances (SHSA) 2017

Shavit

Alavi

Bechara

et al. 2019

Experimental Dermatology

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The 2nd Annual Symposium on Hidradenitis Suppurativa Advances (SHSA) took place on 03–05 November 2017 in Detroit, Michigan, USA. This symposium was a joint meeting of the Hidradenitis Suppurativa Foundation (HSF Inc.) founded in the USA, and the Canadian Hidradenitis Suppurativa Foundation (CHSF). This was the second annual meeting of the SHSA with experts from different disciplines arriving from North America, Europe and Australia, in a joint aim to discuss most recent innovations, practical challenges and potential solutions to issues related in the management and care of Hidradenitis Suppurativa patients. The last session involved clinicians, patients and their families in an effort to educate them more about the disease.

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Development and initial psychometric evaluation of patient-reported outcome questionnaires to evaluate the symptoms and impact of hidradenitis suppurativa

Abstract: The HSSA and HSIA are content-valid, HS-specific, PRO questionnaires with demonstrated ability to generate reliable, valid scores when administered to patients with HS in a research setting.

Cited by 35 publications

References 32 publications

A narrative review of the definition of ‘flare’ in hidradenitis suppurativa

A narrative review of the definition of ‘flare’ in hidradenitis suppurativa

North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations

Proceeding report of the Second Symposium on Hidradenitis Suppurativa Advances (SHSA) 2017

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