Participants' perspectives of "NeuroSask: Active and Connect"-a virtual chronic disease management program for individuals with a neurological condition

Stephen E Patrick; Katherine B Knox; Charity Evans; Michael Levin; Gary Linassi; Ilia Poliakov; Alex Rajput; Sarah J Donkers

doi:10.3389/fneur.2024.1332859

Participants' perspectives of "NeuroSask: Active and Connect"-a virtual chronic disease management program for individuals with a neurological condition

Front Neurol. 2024 Jan 24:15:1332859. doi: 10.3389/fneur.2024.1332859. eCollection 2024.

Authors

Stephen E Patrick¹, Katherine B Knox¹, Charity Evans², Michael Levin^{3

4}, Gary Linassi¹, Ilia Poliakov⁵, Alex Rajput⁶, Sarah J Donkers⁷

Affiliations

¹ Department of Physical Medicine and Rehabilitation, College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada.
² College of Pharmacy and Nutrition, University of Saskatchewan, Saskatoon, SK, Canada.
³ Anatomy and Cell Biology, College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada.
⁴ Office of the Saskatchewan Multiple Sclerosis Research Chair and Division of Neurology, Department of Medicine, College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada.
⁵ Multiple Sclerosis Clinic, Division of Neurology, Department of Medicine, College of Medicine, Multiple Sclerosis Clinic, University of Saskatchewan, Saskatoon, SK, Canada.
⁶ Movement Disorders Program, Division of Neurology, Department of Medicine, College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada.
⁷ School of Rehabilitation Science, College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada.

Abstract

Introduction: Neurological conditions account from more than half of Canadians requiring chronic care. Both physical activity and the development of a self-management skillset are critical components supporting individuals with chronic health conditions. "NeuroSask: Active and Connected" is a virtual chronic disease management program offering twice weekly neuro-physiotherapist directed "active" exercise sessions, followed by weekly knowledge-exchange "connect" sessions with invited guest experts. NeuroSask was launched April 2020 in response to the restricted services and supports for people with neurological conditions. The program aimed to provide seated physical activity, social interaction, and access to expertise in neurological conditions and neurorehabilitation. A program evaluation of NeuroSask was conducted to gain participants' perspectives.

Methods: All participants registered for the NeuroSask program were invited to complete optional online surveys (SurveyMonkey) circulated by email at 3 occasions post-program launch: 10 weeks, 1 year, and 2 years. Participants could complete any one or all of the surveys, at their discretion. The number of potential respondents changed dependent on the total number of participants registered for NeuroSask at the time the survey was circulated. Questions were co-designed by multi-stakeholder team members. Descriptive statistics were used for closed-ended questions and a reflexive thematic analysis was completed with coding conducted in NVivo 12 Plus for open-ended text.

Results: Response rates (participants/registrants) were as follows: 10-week survey 260/793, one year survey 326/1224, and 2-year survey 434/1989. 90% of participants reported being in either the age categories of 40-59 years or above 60 years. 75% of both survey respondents and program registrants were female. 70% of both survey respondents and program registrants reported a diagnosis of multiple sclerosis and 30% reported other neurological conditions. Survey respondents were from all ten Canadian provinces, with 45% reporting living outside of large cities. Respondents reported preferring online vs. in person format for this type of programming. Three main themes, and eight corresponding subthemes were identified highlighting the perceived impact and key components of the NeuroSask program: Theme 1 "together in a positive and encouraging environment" (subthemes 1a: connection, 1b: empowerment); Theme 2 "access to enthusiastic qualified leaders from home" (subthemes 2a: leader characteristics, 2b: accessibility, 2c: program logistics); Theme 3 "being able to enjoy everyday life" (subthemes 3a: symptom benefits and beyond, 3b: carry-over, 3c: keep going, please do not cancel).

Conclusion: NeuroSask is an example of an accessible and meaningful virtual approach to providing ongoing support for some individuals with neurological conditions. It was perceived as beneficial for fostering community and connection in a positive environment with perceived benefits extending beyond symptom management to participant reported improvements in function, daily life, and disease experience.

Keywords: chronic disease; exercise; neurological rehabilitation; self-management; telerehabilitation.

Grants and funding

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. Multiple Sclerosis Canada, Saskatchewan Health Research Foundation, University of Saskatchewan College of Medicine Departments of neurology, Rehabilitation science, and Physical Medicine and Rehabilitation, Office of the Saskatchewan Multiple Sclerosis Clinical Research Chair, City Hospital Foundation, Blue Cross, Parkinson’s Canada, and Spinal Cord Injury Saskatchewan.