Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF)
Abstract
:Simple Summary
Abstract
1. Introduction
2. Methodology
2.1. Participants
2.2. Procedure
2.3. iCanCope Mobile Application
2.3.1. iCanCope Orientation
2.3.2. iCC Group
2.3.3. iCC + CM Group
2.4. Data Analysis
3. Results
3.1. Demographics
3.2. Quantitative
3.3. Qualitative
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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ICC (N = 38) | ICC + CM (N = 38) | p-Value | |
---|---|---|---|
Age, mean (SD) | 41.9 (12.9) | 40.5 (13.6) | 0.663 |
Race (n; %) | 0.558 | ||
White | 33 (78%) | 28 (74%) | |
Black | 2 (5%) | 4 (11%) | |
Asian | 1 (3%) | 2 (5%) | |
Hispanic | 2 (5%) | 2 (5%) | |
Gender (n; %) | 0.443 | ||
Male | 11 (30%) | 12 (29%) | |
Female | 26 (67%) | 24 (71%) | |
Transgender | 0 | 0 | |
Other | 1 (3%) | 0 | |
Highest Education (n; %) | 0.577 | ||
Advanced Degree (e.g., Masters, PhD, MD) | 4 (10%) | 4 (10%) | |
Bachelor’s Degree | 13 (31%) | 10 (26%) | |
Associate degree | 8 (19%) | 9 (23%) | |
Some of College | 7 (17%) | 6 (15%) | |
Technical School | 2 (5%) | 1 (3%) | |
High School | 7 (17%) | 10 (26%) | |
Age at diagnosis in years, mean (SD) | 11.7 (13.1) | 10.4 (11.9) | 0.664 |
Number of NF1 surgeries, mean (SD) | 2.84 (1.5) | 2.8 (1.4) | 0.85 |
Parental History of NF1 (n; %) | 0.408 | ||
yes | 13 (34%) | 10 (26%) | |
maybe | 6 (16%) | 4 (11%) | |
no | 19 (50%) | 22 (58%) |
ICC Engagement Category | Grouping | Total Count Across All Users | Mean per User | SD | p-Value |
---|---|---|---|---|---|
Goals Achieved | iCC | 121 | 3.2 | 9.5 | 0.017 |
app recommended | 1 | <0.001 | |||
user-generated | 120 | 3.2 | 9.5 | ||
iCC + CM | 1020 | 29.1 | 63.9 | ||
app recommended | 183 | 1.6 | 2.1 | <0.001 | |
user-generated | 854 | 14.5 | 13.3 | ||
Goals Created | iCC | 110 | 2.9 | 6.4 | 0.008 |
app recommended | 10 | 1.91 | 0.3 | 0.032 | |
user-generated | 99 | 1.82 | 0.3 | ||
iCC + CM | 415 | 11.8 | 18.7 | ||
app recommended | 77 | 1.1 | 0.2 | <0.001 | |
user-generated | 361 | 6.3 | 0.9 | ||
Articles Read | iCC | 957 | 25.86 | 45.283 | 0.002 |
iCC + CM | 2805 | 80.1 | 88.2 | ||
Check-ins | iCC | 1996 | 53.9 | 27.1 | 0.378 |
iCC + CM | 2407 | 68.7 | 97.8 |
Most Preferred Articles | Total Count of Views | Least Preferred Articles | Total Count of Views |
---|---|---|---|
Treatments for NF1 Pain | 250 | Setting goals related to physical activity | 6 |
What is fatigue and how can I cope with it? | 191 | Talking to your healthcare team | 6 |
Reclined Twist (Yoga Pose) | 174 | Pacing yourself | 6 |
Balancing School, Work and Leisure Activities | 140 | Maintaining a relationship with a boyfriend or girlfriend | 6 |
Can heat or cold help my pain | 136 | Developing and sticking to your healthcare plan | 6 |
Common Causes of Pain in NF1 | 129 | 3-sentence health summary | 6 |
Relaxation and Chronic Pain | 120 | Dealing with setbacks | 4 |
Rest Time | 111 | Tips for staying connected to family and friends | 4 |
Progressive Muscle Relaxation with Tension | 103 | How to help friends understand chronic pain | 3 |
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Buono, F.D.; Larkin, K.; Pham, Q.; De Sousa, D.; Zempsky, W.T.; Lalloo, C.; Stinson, J.N. Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF). Cancers 2023, 15, 3213. https://doi.org/10.3390/cancers15123213
Buono FD, Larkin K, Pham Q, De Sousa D, Zempsky WT, Lalloo C, Stinson JN. Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF). Cancers. 2023; 15(12):3213. https://doi.org/10.3390/cancers15123213
Chicago/Turabian StyleBuono, Frank D., Kaitlyn Larkin, Quynh Pham, Diane De Sousa, William T. Zempsky, Chitra Lalloo, and Jennifer N. Stinson. 2023. "Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF)" Cancers 15, no. 12: 3213. https://doi.org/10.3390/cancers15123213
APA StyleBuono, F. D., Larkin, K., Pham, Q., De Sousa, D., Zempsky, W. T., Lalloo, C., & Stinson, J. N. (2023). Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF). Cancers, 15(12), 3213. https://doi.org/10.3390/cancers15123213