OBJECTIVES:

The Hidradenitis Suppurativa (HS) Quality of Life Questionnaire (HiSQoL) is used to measure the impact of HS on patients’ quality of life; validation of the hand-written HiSQoL questionnaire is ongoing. The HiSQoL is a more HS-specific measure than the Dermatology Life Quality Index (DLQI). An observational, qualitative study to establish the acceptability and usability of the electronic HiSQoL (eHiSQoL) among patients with HS was conducted, in line with FDA guidelines on instrument modification.

METHODS:

One-on-one semi-structured video interviews (approximately 90 minutes each) among adult patients with moderate-to-severe HS were conducted in English, audio-recorded and transcribed. Interviews covered training on the use of the electronic device (tablet) for the questionnaire, completion of the eHiSQoL by the patient and feedback on usability and acceptability.

RESULTS:

A total of 20 patients were interviewed. Mean age (standard deviation [SD]) of patients was 40.6 (14.3) years, 80% were female and 75% had been diagnosed with HS for >5 years. The mean (SD) eHiSQoL total score for the interviewed patients was 27.3 (17.5).

All patients considered the eHiSQoL easy to complete. When questioned, half of the patients reported that they liked the content, diverse questions and applicable response options. The remaining patients spontaneously reported that the eHiSQoL was “simple”, “clear”, “easy” or “concise”.

No patients suggested changing the on-screen appearance of the questions or response options and all were happy with the response scale layout and presentation. However, 20% (n=4) would have preferred a larger font size. Mean completion time for the eHiSQoL was 3.4 minutes, ranging from 0.8–11.2 minutes.

CONCLUSIONS:

The eHiSQoL was considered easy to use and the instructions, items and response options were understood by patients. Overall, the results of the interviews demonstrate high acceptability and usability of the electronic version of the HiSQoL.

FUNDING:

UCB Pharma. Medical writing support provided by Costello Medical.