Content Validity, Acceptability and Usability of the Electronic Hidradenitis Suppurativa Symptom Daily Diary and the Electronic Hidradenitis Suppurativa Symptom Questionnaire

Speaker(s)

Ingram JR1, Ciaravino V2, Rolleri R3, Pansar I4, Taylor N5, Kirby JS6
1Cardiff University, Cardiff, UK, 2UCB Pharma, Colombes, France, 3UCB Pharma, Morrisville, NC, USA, 4UCB Pharma, Brussels, Belgium, 5Evidera, Bethesda, MD, USA, 6Penn State University, Hershey, PA, USA

Presentation Documents

OBJECTIVES:

An observational, qualitative study was conducted to establish the content validity, including acceptability and usability, of electronic versions of the Hidradenitis Suppurativa (HS) Symptom Daily Diary (eHSSDD) and HS Symptom Questionnaire (eHSSQ). Psychometric validation of these tools is ongoing.

METHODS:

One-on-one semi-structured video interviews (approximately 90 minutes each) among patients with moderate‑to‑severe HS were conducted in English, audio-recorded and transcribed. The interview included gathering HS patients’ general experiences, training on the electronic devices, completion of the eHSSDD (hand-held device)/eHSSQ (tablet) and collecting overall impressions and usability of both questionnaires.

RESULTS:

A total of 20 patients were interviewed. Mean age (standard deviation [SD]) was 40.6 (14.3) years, 80% were female and 75% had >5 years since HS diagnosis. The most common HS symptoms reported were drainage/oozing (100%), skin pain/itching (both 95%) and smell/odour (90%).

Mean (SD) scores (0–10) for patients completing the eHSSDD were: worst skin pain: 5.4 (2.9); average skin pain: 5.3 (2.7); worst itch: 5.3 (3.1); smell/odour: 3.3 (3.0); drainage/oozing: 5.0 (3.1). Understanding of questionnaire items was high: worst skin pain (95%); worst itch (95%); smell/odour (100%); drainage/oozing (100%). Six patients (30%) had difficulty articulating average skin pain. Half spontaneously described the questions as relevant for HS.

Mean (SD) scores (0–10) for patients completing the eHSSQ were: skin pain: 5.9 (2.5); itch: 5.5 (3.0); smell/odour: 3.5 (3.2); drainage/oozing: 5.4 (3.2). All patients had an overall understanding of all questionnaire items.

All patients correctly interpreted the instructions and almost all accurately reflected on the 24-hour (eHSSDD) or 7-day (eHSSQ) recall periods. All but one reported (probing/spontaneously) they had no difficulty completing either questionnaire.

CONCLUSIONS:

For the eHSSDD and eHSSQ, instructions, recall periods, items and response options were easily understood by most patients and relevant to their symptoms, providing evidence of content validity, including acceptability and usability.

Funding: UCB Pharma. Medical writing: Costello Medical.

Code

PCR36

Topic

Patient-Centered Research

Topic Subcategory

Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes

Disease

No Additional Disease & Conditions/Specialized Treatment Areas