Neurofibromatosis Type 1 (NF1) often significantly impairs the mental health, social life, self-esteem, and quality of life of adolescent patients. These impacts can be made worse with the experience of NF1-related pain. Nearly three-quarters (73%) of caregivers report that pain interferes with their child's daily functioning, including their mental health, activity, sleep, relationships, and school attendance. Our team has developed the first mobile self-management platform app for adults with NF1-related pain, called iCanCope with NF. It is designed to help people to track their pain, sleep, mood, exercise, and energy level. It helps them set goals, gives suggestions about how to deal with NF1-related pain, and connects them with other individuals living with NF. The goal of this project is to test out a modified version of iCanCope with NF, for youth.
Diagnosed with NF1
Experience of NF1-related pain or discomfort that interfered with function over the past 2 weeks
Able to speak and read English
Moderate to severe cognitive impairments that would prevent independent use the iCanCope intervention, as determined through consultation with their health care provider
Parallel
iCanCope-NF Youth app
Other interventionThe iCanCope digital app offers symptom tracking, self-management skills training, goal setting, and disease education tailored for neurofibromatosis for youth.
iCanCope-NF Youth app + CM
Other interventionThe iCanCope digital app offers symptom tracking, self-management skills training, goal setting, and disease education tailored for neurofibromatosis for youth. In addition to the standardized orientation and push notifications, this app will also allow users to earn incentives aligned with their program engagement.
Feasibility of iCanCope NF
Success will be defined as meeting the following four combined criteria: 1) accrual rate \>70% 2) attrition rate \<20%; 3) technical difficulties in fewer than 10% of cases; and acceptability of mean 4 or higher on the acceptability e-scale.
Pain Interference
measured by the 16-item Pain Impact Scale from the PedsQL NF1 module. This measures reflect how much pain hinders activity and functioning.
Pain Severity
Pain severity will be measured using the 6-item validated Pain Scale from the PedsQL NF1 module.
Pain management
Pain management is assessed will be measured using the 2-item validated Pain Management Scale from the PedsQL NF1 module
Depressive symptoms
Depressive symptoms will be measured using the validated 8-item Patient-Reported Outcomes Measurement Information System (PROMIS®) Depression Short form for the assessment of depressive symptoms.
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The Hospital for Sick Children
Lead sponsor
University Health Network, Toronto
Collaborator
This trial is not recruiting at the moment. You can still explore other options:
