Innovation in the treatment of persistent pain in adults with Neurofibromatosis Type 1 (NF1): Implementation of the iCanCope mobile application

Frank D Buono; Chitra Lalloo; Kaitlyn Larkin; William T Zempsky; Samuel Ball; Lauretta E Grau; Quynh Pham; Jennifer Stinson

doi:10.1016/j.conctc.2021.100883

Innovation in the treatment of persistent pain in adults with Neurofibromatosis Type 1 (NF1): Implementation of the iCanCope mobile application

Contemp Clin Trials Commun. 2021 Dec 31:25:100883. doi: 10.1016/j.conctc.2021.100883. eCollection 2022 Feb.

Authors

Frank D Buono¹, Chitra Lalloo^{2

3}, Kaitlyn Larkin¹, William T Zempsky^{4

5}, Samuel Ball¹, Lauretta E Grau⁶, Quynh Pham^{3

7}, Jennifer Stinson^{2

3

8}

Affiliations

¹ Department of Psychiatry, Yale School of Medicine, New Haven, CT, USA.
² The Research Institute, The Hospital of Sick Children, Toronto, ON, Canada.
³ Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
⁴ The Francine L. and Robert B. Goldfarb-William T. Zempsky, MD Endowed Chair for Pain and Palliative Medicine, Connecticut Children's Medical Center, Hartford, CT, USA.
⁵ Department of Pediatrics, University of Connecticut School of Medicine, Stores, CT, USA.
⁶ Department of Epidemiology of Microbial Diseases, Yale School of Public Health, New Haven, CT, USA.
⁷ Centre for Global eHealth Innovation, Techna Institute, University Health Network, Toronto, ON, Canada.
⁸ Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, ON, Canada.

Abstract

Neurofibromatosis Type 1 (NF1) is a genetic disorder presenting with chronic pain symptoms that has limited treatment options for addressing the pain. The utilization of a mobile application allows for greater reach and scalability when using empirically valid psychosocial self-management treatments for pain. The iCanCope mobile application has been utilized in several different populations dealing with pain symptoms and has demonstrated initial effectiveness. To address the need for this population, we have customized the iCanCope mobile application for the NF1 population and included additional tailored features. We describe the rationale and design of a pilot randomized control study with a sample of 108 adults with NF1, in which two groups will receive access to the mobile application, of which one group will be incentivized to engage in the mobile application and the third group will treatment as usual over the course of 8-week period with a six-week follow-up. Outcomes will focus on the acceptability of the iCanCope-NF mobile application within the NF1 population and the impact of pain related activity on psychometric evaluations to determine if the contingency management will impact the engagement of mobile application, as well as to identify the participants' experiences in relationship to their treatment satisfaction and perceived support.

Keywords: Contingency management; Mobile application; Neurofibromatosis type 1; Pilot randomized control trial; iCanCope.