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.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
TREATMENT
Masking
NONE
Enrollment
60
The iCanCope digital app offers symptom tracking, self-management skills training, goal setting, and disease education tailored for neurofibromatosis for youth.
The 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.
Time frame: 8 weeks
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.
Time frame: 8 weeks
Pain Severity
Pain severity will be measured using the 6-item validated Pain Scale from the PedsQL NF1 module.
Time frame: 8 weeks
Pain management
Pain management is assessed will be measured using the 2-item validated Pain Management Scale from the PedsQL NF1 module
Time frame: 8 weeks
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.
Time frame: 8 weeks
Anxiety
Anxiety will be assessed using the validated 10-item Worry Scale from the PedsQL NF1 Module.
Time frame: 8 weeks
Transition readiness
Transition readiness which examines how prepared a pediatric patient is for adult care. This will be assessed using the 20-item validated Transition Readiness Assessment Questionnaire Version 5 (TRAQ 5.0)
Time frame: 8 weeks
Health-related quality of life
Health-related quality of life will be measured using the 23-item PedsQL 4.0 Generic49 questionnaire.
Time frame: 8 weeks
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.