Neurofibromatosis Type 1 (NF1) is a genetic condition affecting 1 in 2,500 individuals. This disease presents with various different tumors, and over half of individuals with NF1 suffer from constant pain from NF1-related tumors. This persistent pain affects their relationships, work, and other activities. NF1 is a rare disease, so there are not many medical providers who specialize in this disease. Two main options for treating pain from these tumors are surgery and opioid medication. Because there are many individuals with pain and very few medical experts, we need to create alternative ways to get medical care for these patients. In this project, we want to understand and test whether patients with NF1 can use a mobile application (such as iCanCope-NF) to manage their own pain.
The project will have three stages. In the first stage, we will ask a group of medical experts who specialize in NF1 to discuss pain symptoms. We will also ask multiple individuals who have NF1 to tell us about their personal experience with pain symptoms. For the second stage, we will adapt an existing mobile application (iCanCope) based on the recommendations from medical experts and individuals with NF1. We will also test whether the mobile application is easy to use by individuals with NF1. In the last stage, we will test whether the mobile application is helpful for adults between the ages of 18 to 32. We will use standard research methods to compare three groups of adults. One group will not get to use the mobile application; the second group will use the mobile application; and the third group will get the mobile application along with an added incentive program.
The iCanCope-NF mobile application will help individuals with NF1 understand and identify pain, enabling patients to advocate for themselves. It will teach patients self-management strategies and how to identify potential pain triggers, help with goal setting, and provide a social community for peer support. This research project can advance patient care and pain management by teaching those who are currently living with Neurofibromatosis Type 1 how to self-manage their pain.