JMIR Publications

ABSTRACT

Background:

Adolescents with cerebral palsy (CP), who have mobility limitations, have almost no access to inexpensive and enjoyable home-based programs that can be disseminated on a large-scale to help them independently manage their health through participation in leisure-time physical activity (LTPA).

Objective:

The primary aim was to determine the preliminary efficacy of the early adoption phase of an adult Movement-to-Music (M2M) program with behavioral telecoaching for increasing LTPA and activity participation compared with a waitlist control group in adolescents with CP. A secondary aim was to explore the potential benefits of the program on perceived levels of pain and fatigue. A tertiary aim was to qualitatively evaluate factors that influenced engagement and develop a theory that would inform the development of a more targeted M2M telehealth program.

Methods:

This randomized controlled trial piloted a 4-week M2M program with weekly behavioral telecoaching among 58 adolescents with CP (GMFCS levels I-V) who walked or used wheelchairs. Participants were recruited from a Children’s hospital and randomized into one of two groups: a) M2M or b) control, which maintained their daily activities. M2M included videos that participants were asked to complete three times each week at home (asynchronous training). Adherence to video minutes was measured objectively via cloud-based analytics. Changes in activity and LTPA participation were measured pre to post intervention via the Children’s Assessment of Participation and Enjoyment (CAPE) total domain scores and active physical recreation domain scores (CAPE-APR), respectively. Perceived pain and fatigue were measured via the National Institutes of Health Neuro-QoL short forms. Changes in scores were compared between groups using analysis of covariance (ANCOVA). A grounded theory approach was used to analyze one-on-one interviews, coaching notes, and feedback surveys.

Results:

58 people were enrolled, and 49 completed the primary outcome follow-up assessment. Mean adherence to the videos was 90% (44/49 minutes) in week 1; 83% in week two (56/68 minutes); 69% in week 3(45/65 minutes), and 43% in week 4 (40/95 minutes). Adherence to the coaching calls was 98% in week 1; week 2, 90%; week 3, 90%; and week 4, 86%. ANCOVA revealed a statistically significant between group difference in pre to post change score for CAPE-APR-Intensity in favor of the intervention group (F (1, 47)=8.76, p = 0.0048; effect size=0.17, a.k.a. volume of LTPA). Qualitative findings highlighted five critical factors that influenced participants’ engagement in the program: 1) caregiver support; 2) video elements; 3) suitable exercises; 4) music; and 5) behavioral coaching.

Conclusions:

This project determined that adolescents with CP respond well to a M2M telehealth program that could enhance their LTPA levels. This paper describes a theory where engagement in a telehealth LTPA program can be optimized through functional and age-specific modifications for adolescents with CP. Clinical Trial: ClinicalTrials.gov NCT04264390