Cognitive Testing of an Electronic Version of the Faces Pain Scale-Revised with Pediatric and Adolescent Sickle Cell Patients

• Type of Material: Article
• Authors: Neehar Gupta, Eli Lilly and Company; April N. Naegeli, Eli Lilly and Company; Diane M. Turner-Bowker, ERT; Emuella M. Flood, ICON plc; Lori Ellen Heath, Eli Lilly and Company; Shelley M. Mays, Children’s Healthcare of Atlanta; Carlton Dampier, Emory University
• Language: English
• Date: 2016-10-01
• Publisher: Springer Verlag (Germany)
• Publication Version: Final Published Version
• Copyright Statement: © 2016, The Author(s).
• License: Creative Commons Attribution-NonCommercial 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1007/s40271-016-0166-z
• Title of Journal or Parent Work: Patient - Patient-Centered Outcomes Research
• ISSN: 1178-1653
• Volume: 9
• Issue: 5
• Start Page: 433
• End Page: 443
• Keywords: ETIOLOGY; HOME MANAGEMENT; Life Sciences & Biomedicine; DISEASE; FREQUENCY; TRIAL; PISCES; Pediatrics; SMARTPHONE; Health Care Sciences & Services; IMPACT; Science & Technology; CHILDREN; Health Policy & Services; DAILY DIARY
• Research Categories: Health Sciences, General; Health Sciences, Health Care Management; Health Sciences, Medicine and Surgery

Abstract

Background: Patient diaries and pain scales can capture the course and complications of pain managed at home in children. The Faces Pain Scale-Revised (FPS-R) is a validated scale showing reliability in children, but it has not been validated in children with sickle cell disease (SCD). Objective: The purpose of this study was to evaluate comprehension and usability of an electronic modified version of the FPS-R among pediatric patients with SCD. Methods: This was a cross-sectional, qualitative study involving in-person interviews with children/adolescents from the USA and their parents/legal guardians. Interviews involved cognitive debriefing and usability testing of the FPS-R. Results: In total, 22 children with SCD aged 4–17 years participated. Children aged 4–6 were generally unable to demonstrate clear understanding of the FPS-R and its response scale. Overall, children aged ≥7 years understood the instrument and could complete it on the electronic device, although children aged 7–8 often needed assistance from the parent. Children aged 9–17 years were able to read and complete the instrument independently. Most participants considered the electronic device easy to use. Conclusions: The FPS-R was shown to be a comprehensible and usable pain measure for children aged 7–17 with SCD and to be beneficial for future clinical studies.