Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts

• Published in: BMJ open Vol. 12; no. 7; p. e056692
• Main Authors: Grau, Lauretta E, Larkin, Kaitlyn, Lalloo, Chitra, Stinson, Jennifer N, Zempsky, William T, Ball, Samuel A, Buono, Frank D
• Format: Journal Article
• Language: English
• Published: England British Medical Journal Publishing Group 01.07.2022; BMJ Publishing Group LTD; BMJ Publishing Group
• Series: Original research
• Subjects: Adaptation; Adult; Adult neurology; Chronic illnesses; Chronic Pain - etiology; Chronic Pain - therapy; Complementary Medicine; Focus Groups; Genetic disorders; Humans; Mobile Applications; Neurofibromatosis 1 - complications; Neurofibromatosis 1 - therapy; Neurogenetics; Neurological disorders; Neurological pain; PAIN MANAGEMENT; Patients; QUALITATIVE RESEARCH; Self-Management - methods; Smartphones; Telemedicine; Tumors; Young adults; United States > US; Adult neurology; PAIN MANAGEMENT; Neurogenetics; COMPLEMENTARY MEDICINE; QUALITATIVE RESEARCH; Neurological pain
• ISSN: 2044-6055; 2044-6055
• DOI: 10.1136/bmjopen-2021-056692

ObjectiveNeurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1.DesignWe conducted a series of online, audio-recorded focus groups that were then thematically analysed.SettingOnline focus groups with adults currently residing in the USA.ParticipantsTwo types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups).ResultsSix themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another’s experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals.ConclusionsBoth participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users’ specific needs.