Highlights
- •Persons with MS surveyed expressed an interest in a self-management program.
- •Stakeholders preferred a fatigue mHealth program, but with an in-person orientation.
- •The option to skip sections that were not pertinent was suggested.
- •Other adaptations included setting reminders and visualizing their progress.
Abstract
Background
Self-management programs have been used with success in several clinical populations,
and there is a growing body of evidence to support their use among persons with multiple
sclerosis (MS). This group aimed to develop a novel self-management program, Managing My MS My Way (M4W), which is based in social cognitive theory and contains evidence-based strategies
that have been shown to be effective for persons with MS. Furthermore, persons with
MS would serve as stakeholders throughout the development process to ensure that the
program would be useful and encourage adoption. This paper outlines the initial development
stages of M4W, including determining 1) stakeholders’ interest in a self-management program, 2)
the general focus of the program, 3) the delivery method of the program, 4) the content
of the program, and 5) potential barriers and adaptations.
Methods
A three-stage study consisting of an anonymous survey (n = 187) to determine interest, topic, and delivery format; semi-structured interviews
(n = 6) to follow-up on the survey results; and semi-structured interviews (n = 10) to refine the content and identify barriers.
Results
Over 80% of survey participants were somewhat or very interested in a self-management
program. Fatigue was the topic with the greatest amount of interest (64.7%). An internet-based
program (e.g., mobile health or mHealth) was the most preferred delivery method (37.4%),
with the first group of stakeholders proposing a module-based system with an initial
in-person orientation session. The second group of stakeholders were overall enthusiastic
about the program, giving moderate to high confidence scores for each of the proposed
interventional strategies. Suggestions included skipping sections that were not applicable
to them, setting reminders, and seeing their progress (e.g., visualizing their fatigue
scores as they move through the program). In addition, stakeholders recommended larger
font sizes and speech-to-text entry.
Conclusions
Input from the stakeholders has been incorporated into the prototype of M4W. The next steps will be to test this prototype with another group of stakeholders
to assess its initial usability and identify issues before developing the functional
prototype.
Keywords
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Article info
Publication history
Published online: April 16, 2023
Accepted:
April 15,
2023
Received in revised form:
March 30,
2023
Received:
February 9,
2023
Identification
Copyright
© 2023 Elsevier B.V. All rights reserved.
