Patients’ preference regarding patient reported outcome measures (PROMs) for hidradenitis suppurativa, a cross-sectional multi-center study

Background: Over the last decade, research interest in hidradenitis suppurativa (HS) has grown exponentially, resulting in a need for accurate outcome measures. However, subjective outcome measures included in research have not always been those that patients regard as most important or relevant. Objective: To evaluate the preference of patients concerning three different patient reported outcome measures (PROMs), the DLQI, HiSQOL and Skindex-17. Methods: This cross sectional, multi-center study in the Netherlands included HS patients who completed the PROMs, each followed by the QQ-10 questionnaire. Their preference regarding these PROMs was evaluated using value and burden scores of the QQ-10 questionnaire, a ranking system and open-end responses. Results: A total of 200 patients were included in the study. The QQ-10 value scores for the DLQI, HiSQOL, and Skindex-17 were 66.3%, 67.1%, and 69.2%, respectively. The HiSQOL and Skindex-17 had a similar mean burden score of 23.8%, while the DLQI had a burden score of 24.4%. The Skindex-17 was ranked first by 41.5% of patients, followed by the HiSQOL (31.5%) and DLQI (27%). The Skindex-17 received the most negative feedback (85 comments), followed by the DLQI (84 comments), with both questionnaires receiving criticism primarily focused on their content. The HiSQOL received 57 comments, mainly concerning its design. Conclusion: Patients did not demonstrate a clear preference among the three PROMs based on value and burden scores. However, qualitative feedback from open-ended responses suggests that the HiSQOL may be preferable, given its inclusion of HS-specific symptoms.