Innovation in the Treatment of Persistent Pain in Adults with NF1: Implementation of the iCanCope Mobile Application
ABSTRACT
Background:
Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic condition affecting 1 in 2500 individuals. Over 50% of individuals with NF1 report significant pain and discomfort which may be associated with benign and malignant tumors, but is often not localized to a structural lesion, thus presenting treatment challenges for patients and their medical caregivers. To date, there are very few treatments aside from surgical intervention to mitigate pain.
Objective:
We developed the iCanCope-NF mobile application for pain self-management. The iCanCope-NF mobile application is a customized self-monitoring and pain management mobile application designed to provide resources and support for those suffering from chronic pain due to NF1. The application allows users access to daily pain monitoring and quality of life check-ins, the ability to plot interrelated variables on various timelines to observe trends in pain and interference across different areas of life (such as sleep, physical activity, and mood), the option to set physiological and psychological goals, and a robust library of written and video resources to help manage pain symptoms and better cope with NF1.
Methods:
The present study evaluated the iCanCope-NF to reduce pain severity and interference in adults with NF1. A total of 80 participants across three different groups (control, iCanCope-NF access condition, and iCanCope-NF contingency management condition where subjects were provided monetary incentives for engaging with the various features within the application (CM)) completed a randomized clinical trial in which evaluations were completed at intake (initial day of participation), discharge (two-month post-intake), and six-week post discharge.
Results:
Preliminary data analysis demonstrated individuals randomized to the iCanCope-NF + CM had greater engagement with the mobile application than individuals who were randomized to iCanCope-NF. Additionally, individuals in the iCanCope-NF + CM consistently checked in more (59.5/60days (SD) than individuals in the iCanCope-NF group (51/60 days (SD). Pain interference (as measured by the Pain Interference Index, (PII) was significantly different across all three groups at discharge: Control (M=6.3), ICC (M=5.7), ICC+CM (M=5.1), p<.05.
Conclusions:
Qualitative interviews completed at discharge for individuals with access to the application indicated the app was a ‘wonderful measuring tool’ and ‘provided credibility of my pain symptoms’ dramatic and distinctive aide in the monitoring and tracking of their pain symptoms. We demonstrated preliminary acceptability and efficacy for iCanCope-NF as the first pain self-management tool for individuals with NF1. iCanCope-NF + CM was successful in increasing engagement and decreasing pain interference. Clinical Trial: NCT04561765
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