Related Experiment Video
Updated: May 17, 2026
02:28
Measuring Psoriasis Severity at Home
Published on: March 1, 2024
Patients' Preference Regarding Patient-Reported Outcome Measures for Hidradenitis Suppurativa: A Cross-Sectional
Johanna C van Huijstee1, Nicole D K Koerts2, Colin C Spence3
1Department of Dermatology, Erasmus University Medical Center, Rotterdam, The Netherlands, j.vanhuijstee@erasmusmc.nl.
Dermatology (Basel, Switzerland)
|May 15, 2026
Summary
Patients found little difference in value or burden between three hidradenitis suppurativa (HS) outcome measures. Qualitative feedback suggests the HiSQOL may be preferred due to its HS-specific symptom inclusion.
Area of Science:
- Dermatology
- Patient-Reported Outcome Measures (PROMs)
- Clinical Research
Background:
- Growing research in hidradenitis suppurativa (HS) necessitates accurate outcome measures.
- Existing subjective measures may not align with patient priorities.
- Need for patient-centered outcome assessment in HS research.
Purpose of the Study:
- To assess patient preferences for three distinct PROMs: DLQI, HiSQOL, and Skindex-17.
- To compare the perceived value and burden of different HS outcome measures from a patient perspective.
- To identify the most preferred patient-reported outcome measure for HS research.
Main Methods:
- Cross-sectional, multi-center study involving 200 HS patients in the Netherlands.
- Patients completed DLQI, HiSQOL, and Skindex-17 PROMs, followed by the QQ-10 questionnaire.
- Preference evaluation utilized QQ-10 value/burden scores, ranking, and open-ended feedback.
Main Results:
- No clear patient preference emerged based on QQ-10 value (66.3%-69.2%) or burden scores (23.8%-24.4%).
- Skindex-17 was ranked highest (41.5%), but received significant content-focused criticism.
- HiSQOL received fewer comments, primarily regarding design, and was ranked second (31.5%).
Conclusions:
- Patient preference among DLQI, HiSQOL, and Skindex-17 was not definitively established by quantitative scores.
- Qualitative data suggests HiSQOL may be a more suitable PROM for HS patients.
- HiSQOL's inclusion of HS-specific symptoms is a key factor for potential patient preference.