PROMPREF

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. Therefore, we evaluated the preference of patients concerning three different patient reported outcome measures (PROMs), the DLQI, HiSQOL and Skindex-17 in a prospective cross-sectional multicenter study. A qq-10 questionnaire was used to evaluate the value and burden score of these different PROMs. Patients aged 16 and above were eligible for inclusion if they had been diagnosed with HS and were capable of reading Dutch. Written informed consent was obtained from all patients. As part of routine care, all patients completed the DLQI, HiSQOL and Skindex-17. Hereafter, the patients were asked to complete the QQ-10 questionnaire to provide their perspectives on the various PROMs. Responses of the qq-10 questionnaire are rated on a five-point Likert scale, ranging from 4 points (strongly agree) to 0 points (strongly disagree), yielding a maximum of 24 value points (equals 100%) and 16 burden points (equals 100%). This dataset of mendeley involves the supplementary table of a secondary outcome measure, the value and burden scores of the 200 participants categorized by sex, age, and disease severity.