Evidence map›Paper›PMID 31705538›Full record

Observational studyThe British journal of dermatology2020

The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials.

J S Kirby, L Thorlacius, B Villumsen, J R Ingram, A Garg, K B Christensen, M Butt, S Esmann, J Tan, G B E Jemec

Abstract readObservational Study
In one paragraph

Observational study in The British journal of dermatology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 55 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
55citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

55 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
  2. Australasian hidradenitis suppurativa management guidelines.The Australasian journal of dermatology · 2025
    Guideline
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

J S KirbyDepartment of Dermatology, Penn State Health Milton S. Hershey Medical Center, Hershey, PA, U.S.A.
L ThorlaciusDepartment of Dermatology, Zealand University Hospital, Roskilde; Health Sciences Faculty, University of Copenhagen, Copenhagen, Denmark.
B VillumsenThe Patients' Association HS Denmark, Copenhagen, Denmark.
J R IngramDivision of Infection & Immunity, Cardiff University, University Hospital of Wales, Heath Park, Cardiff, CF14 4XN, U.K.ORCID 0000-0002-5257-1142
A GargDepartment of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra Northwell, New Hyde Park, NY, U.S.A.ORCID 0000-0003-0886-6856
K B ChristensenDepartment of Dermatology, Zealand University Hospital, Roskilde; Health Sciences Faculty, University of Copenhagen, Copenhagen, Denmark.
M ButtDepartment of Dermatology, Penn State Health Milton S. Hershey Medical Center, Hershey, PA, U.S.A.ORCID 0000-0002-5860-1074
S EsmannDepartment of Dermatology, Zealand University Hospital, Roskilde; Health Sciences Faculty, University of Copenhagen, Copenhagen, Denmark.
J TanDepartment of Medicine, University of Western Ontario, Windsor, ON, Canada.ORCID 0000-0002-9624-4530
G B E JemecDepartment of Dermatology, Zealand University Hospital, Roskilde; Health Sciences Faculty, University of Copenhagen, Copenhagen, Denmark.ORCID 0000-0002-0712-2540

Funding

Penn State Clinical and Translational Science InstituteUL1TR002014 · NCATS · PENNSYLVANIA STATE UNIV HERSHEY MED CTR · PI KRASCHNEWSKI, JENNIFER L. · 2016 to 2025
$33.7M
Penn State Clinical and Translational Science InstituteUL1TR000127 · NCATS · PENNSYLVANIA STATE UNIV HERSHEY MED CTR · PI SINOWAY, LAWRENCE I · 2012 to 2015
$17.1M
Development of Outcome Measures for Hidradenitis SuppurativaK08HS024585 · AHRQ · PENNSYLVANIA STATE UNIV HERSHEY MED CTR · PI KIRBY, JOSLYN S · 2016 to 2019
$633k
AHRQ HHS K08 HS024585NCATS NIH HHS UL1 TR000127NCATS NIH HHS UL1 TR002014NIAMS NIH HHS L30 AR072438
6 · The paper itself

Abstract

backgroundHidradenitis suppurativa (HS) is a chronic, inflammatory condition that can have a large negative impact on health-related quality of life (HRQOL). A reliable and validated measure of HS-specific HRQOL in clinical studies is needed.

objectivesTo develop and validate the Hidradenitis Suppurativa Quality Of Life (HiSQOL©) scale, for clinical trial measurement of HS-specific HRQOL.

methodsIn stage 1, qualitative concept elicitation interviews were conducted with patients with HS in Denmark (n = 21) and the U.S.A. (n = 21). In stage 2, cognitive debriefing interviews were performed with U.S. (n = 30) and Danish patients with HS (n = 30). In stage 3 an observational study of 222 patients with HS in the U.S.A. was conducted for item reduction, measure validation and assessment of psychometric properties. In stage 4, an observational study of 215 patients with HS in Denmark was conducted to confirm the psychometric structure derived in stage 3. In both studies the Dermatology Life Quality Index, Hospital Anxiety and Depression Scale and numerical rating scale for pain were also included.

resultsIn concept elicitation, 99 items were generated, which were reduced to 41 after removing duplicates. In cognitive debriefing, two items were added and one item removed. A 42-item instrument was psychometrically assessed. Based on psychometric analyses and patient input, the instrument was reduced to 17 items that had strong psychometric properties in both the U.S. and Danish samples.

conclusionsThe HiSQOL is a reliable and valid instrument to measure HS-specific HRQOL in clinical trials.

Indexed as

Hidradenitis SuppurativaHumansPainPsychometricsQuality of LifeSurveys and Questionnaires

Identifiers

PMID31705538
PMCPMC7205560

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.