Telehealth Movement-to-Music to Increase Physical Activity Participation Among Adolescents With Cerebral Palsy: Pilot Randomized Controlled Trial

Byron Lai, Laura Vogtle, Raven Young, Mary Craig, Yumi Kim, Marissa Gowey, Erin Swanson-Kimani, Drew Davis, James H Rimmer, Byron Lai, Laura Vogtle, Raven Young, Mary Craig, Yumi Kim, Marissa Gowey, Erin Swanson-Kimani, Drew Davis, James H Rimmer

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 of this study 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. The secondary aim was to explore the effects of the program on perceived levels of pain and fatigue. The tertiary aim was to qualitatively evaluate the factors that influenced adherence and develop a theory that would inform the development of a more targeted M2M telehealth program for this group.

Methods: This randomized controlled trial piloted a 4-week M2M program with weekly behavioral telecoaching among 58 adolescents with CP who walked or used wheelchairs. The participants were randomized into one of 2 groups: M2M or control, which maintained their daily activities. M2M included videos that participants were asked to complete 3 times each week at home (asynchronous training). Adherence to video minutes was objectively measured using cloud-based analytics. Changes in activity and LTPA participation were measured before and after the intervention using the Children's Assessment of Participation and Enjoyment total domain scores and active physical recreation domain scores, respectively. Perceived pain and fatigue were measured using the National Institutes of Health Neuro-QoL short forms. The changes in scores were compared between the groups using analysis of covariance. A grounded theory approach was used to analyze one-on-one interviews, coaching notes, and feedback surveys.

Results: A total of 58 people were enrolled, of which 49 (84%) completed the primary outcome follow-up assessment. The mean adherence to the prescribed exercise video minutes across all 4 weeks was 68%, starting from 90% in week 1 and gradually declining to 43% in week 4. Mean adherence to coaching calls was 91%. Analysis of covariance revealed a statistically significant difference between the pre- to postchange scores for Children's Assessment of Participation and Enjoyment Active Physical Recreation-Intensity domain scores in favor of the intervention group (F1,47=8.76; P=.005; effect size=0.17, also known as volume of LTPA). The qualitative findings highlighted 5 critical factors that influenced participants' adherence to the program: caregiver support, video elements, suitable exercises, music, and behavioral coaching.

Conclusions: This project determined that adolescents with CP responded well to an M2M telehealth program that could enhance their LTPA levels. This paper describes a theory in which adherence to a telehealth LTPA program can be optimized through functional and age-specific modifications for adolescents with CP.

Trial registration: ClinicalTrials.gov NCT04264390; https://ichgcp.net/clinical-trials-registry/NCT04264390.

Keywords: cerebral palsy; developmental disability; exercise; mobile phone; telemedicine; telerehabilitation; therapy.

Conflict of interest statement

Conflicts of Interest: None declared.

©Byron Lai, Laura Vogtle, Raven Young, Mary Craig, Yumi Kim, Marissa Gowey, Erin Swanson-Kimani, Drew Davis, James H Rimmer. Originally published in JMIR Formative Research (https://formative.jmir.org), 28.10.2022.

Figures

Figure 1
Figure 1
Theory for maximizing adherence in telehealth physical activity among adolescents with cerebral palsy.

References

    1. Accardo PJ. Capute & Accardo's Neurodevelopmental Disabilities in Infancy and Childhood, Third Edition: Volume I: Neurodevelopmental Diagnosis and Treatment. Baltimore, MD, USA: Brookes Publishing; 2008.
    1. Bax M, Goldstein M, Rosenbaum P, Leviton A, Paneth N, Dan B, Jacobsson B, Damiano D, Executive Committee for the Definition of Cerebral Palsy Proposed definition and classification of cerebral palsy, April 2005. Dev Med Child Neurol. 2005 Aug;47(8):571–6. doi: 10.1017/s001216220500112x.
    1. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M, Damiano D, Dan B, Jacobsson B. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007 Feb;109:8–14.
    1. Caspersen CJ, Powell KE, Christenson GM. Physical activity, exercise, and physical fitness: definitions and distinctions for health-related research. Public Health Rep. 1985;100(2):126–31.
    1. Carlon SL, Taylor NF, Dodd KJ, Shields N. Differences in habitual physical activity levels of young people with cerebral palsy and their typically developing peers: a systematic review. Disabil Rehabil. 2013 Apr;35(8):647–55. doi: 10.3109/09638288.2012.715721.
    1. Waltersson L, Rodby-Bousquet E. Physical activity in adolescents and young adults with cerebral palsy. Biomed Res Int. 2017;2017:8080473. doi: 10.1155/2017/8080473. doi: 10.1155/2017/8080473.
    1. Lai B, Wen H, Sinha T, Davis D, Swanson-Kimani E, Wozow C, Young R, Powell D, Rimmer JH. The impact of COVID-19 on the lifestyles of adolescents with cerebral palsy in the Southeast United States. Disabil Health J. 2022 Apr;15(2):101263. doi: 10.1016/j.dhjo.2021.101263. S1936-6574(21)00244-2
    1. Ryan JM, Cassidy EE, Noorduyn SG, O'Connell NE. Exercise interventions for cerebral palsy. Cochrane Database Syst Rev. 2017 Jun 11;6(6):CD011660. doi: 10.1002/14651858.CD011660.pub2.
    1. Hallal PC, Victora CG, Azevedo MR, Wells JC. Adolescent physical activity and health: a systematic review. Sports Med. 2006;36(12):1019–30. doi: 10.2165/00007256-200636120-00003.36123
    1. Slaman J, Roebroeck M, van der Slot W, Twisk J, Wensink A, Stam H, van den Berg-Emons R, LEARN 2 MOVE Research Group Can a lifestyle intervention improve physical fitness in adolescents and young adults with spastic cerebral palsy? A randomized controlled trial. Arch Phys Med Rehabil. 2014 Sep;95(9):1646–55. doi: 10.1016/j.apmr.2014.05.011.S0003-9993(14)00406-7
    1. Vogtle LK, Malone LA, Azuero A. Outcomes of an exercise program for pain and fatigue management in adults with cerebral palsy. Disabil Rehabil. 2014;36(10):818–25. doi: 10.3109/09638288.2013.821181.
    1. Gillett JG, Lichtwark GA, Boyd RN, Barber LA. Functional anaerobic and strength training in young adults with cerebral palsy. Med Sci Sports Exerc. 2018 Aug;50(8):1549–57. doi: 10.1249/MSS.0000000000001614.
    1. Johnson CC. The benefits of physical activity for youth with developmental disabilities: a systematic review. Am J Health Promot. 2009;23(3):157–67. doi: 10.4278/ajhp.070930103.
    1. Park EY, Kim WH. Meta-analysis of the effect of strengthening interventions in individuals with cerebral palsy. Res Dev Disabil. 2014 Feb;35(2):239–49. doi: 10.1016/j.ridd.2013.10.021.S0891-4222(13)00465-4
    1. Verschuren O, Peterson MD, Balemans AC, Hurvitz EA. Exercise and physical activity recommendations for people with cerebral palsy. Dev Med Child Neurol. 2016 Aug;58(8):798–808. doi: 10.1111/dmcn.13053. doi: 10.1111/dmcn.13053.
    1. Lai B, Lee E, Wagatsuma M, Frey G, Stanish H, Jung T, Rimmer JH. Research trends and recommendations for physical activity interventions among children and youth with disabilities: a review of reviews. Adapt Phys Activ Q. 2020 Apr 01;37(2):211–34. doi: 10.1123/apaq.2019-0081.apaq.2019-0081
    1. Pauwels C, Roren A, Gautier A, Linières J, Rannou F, Poiraudeau S, Nguyen C. Home-based cycling program tailored to older people with lumbar spinal stenosis: barriers and facilitators. Ann Phys Rehabil Med. 2018 May;61(3):144–50. doi: 10.1016/j.rehab.2018.02.005. S1877-0657(18)30034-4
    1. Reedman S, Boyd RN, Sakzewski L. The efficacy of interventions to increase physical activity participation of children with cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 2017 Oct;59(10):1011–8. doi: 10.1111/dmcn.13413. doi: 10.1111/dmcn.13413.
    1. Lai B, Lee E, Kim Y, Matthews C, Swanson-Kimani E, Davis D, Vogtle L, Rimmer JH. Leisure-time physical activity interventions for children and adults with cerebral palsy: a scoping review. Dev Med Child Neurol. 2021 Feb;63(2):162–71. doi: 10.1111/dmcn.14751. doi: 10.1111/dmcn.14751.
    1. 2008 Physical Activity Guidelines for Americans: Be Active, Healthy, and Happy! U.S. Department of Health and Human Services. 2008. [2022-09-27]. .
    1. Martin Ginis KA, Ma JK, Latimer-Cheung AE, Rimmer JH. A systematic review of review articles addressing factors related to physical activity participation among children and adults with physical disabilities. Health Psychol Rev. 2016 Dec;10(4):478–94. doi: 10.1080/17437199.2016.1198240.
    1. Bloemen MA, Backx FJ, Takken T, Wittink H, Benner J, Mollema J, de Groot JF. Factors associated with physical activity in children and adolescents with a physical disability: a systematic review. Dev Med Child Neurol. 2015 Feb;57(2):137–48. doi: 10.1111/dmcn.12624. doi: 10.1111/dmcn.12624.
    1. Jennett PA, Affleck Hall L, Hailey D, Ohinmaa A, Anderson C, Thomas R, Young B, Lorenzetti D, Scott RE. The socio-economic impact of telehealth: a systematic review. J Telemed Telecare. 2003;9(6):311–20. doi: 10.1258/135763303771005207.
    1. Friedman AB, Gervasi S, Song H, Bond AM, Chen AT, Bergman A, David G, Bailey JM, Brooks R, Smith-McLallen A. Telemedicine catches on: changes in the utilization of telemedicine services during the COVID-19 pandemic. Am J Manag Care. 2022 Jan 01;28(1):e1–6. doi: 10.37765/ajmc.2022.88771. 88771
    1. Mohr DC, Cuijpers P, Lehman K. Supportive accountability: a model for providing human support to enhance adherence to eHealth interventions. J Med Internet Res. 2011 Mar 10;13(1):e30. doi: 10.2196/jmir.1602. v13i1e30
    1. Mitchell LE, Ziviani J, Boyd RN. A randomized controlled trial of web-based training to increase activity in children with cerebral palsy. Dev Med Child Neurol. 2016 Jul;58(7):767–73. doi: 10.1111/dmcn.13065. doi: 10.1111/dmcn.13065.
    1. Lin HC, Wuang YP. Strength and agility training in adolescents with Down syndrome: a randomized controlled trial. Res Dev Disabil. 2012;33(6):2236–44. doi: 10.1016/j.ridd.2012.06.017.S0891-4222(12)00165-5
    1. Bringas ML, Zaldivar M, Rojas PA, Martinez-Montes K, Chongo DM, Ortega MA, Galvizu R, Perez AE, Morales LM, Maragoto C, Vera H, Galan L, Besson M, Valdes-Sosa PA. Effectiveness of music therapy as an aid to neurorestoration of children with severe neurological disorders. Front Neurosci. 2015 Nov 4;9:427. doi: 10.3389/fnins.2015.00427. doi: 10.3389/fnins.2015.00427.
    1. Wang TH, Peng YC, Chen YL, Lu TW, Liao HF, Tang PF, Shieh JY. A home-based program using patterned sensory enhancement improves resistance exercise effects for children with cerebral palsy: a randomized controlled trial. Neurorehabil Neural Repair. 2013 Oct;27(8):684–94. doi: 10.1177/1545968313491001.1545968313491001
    1. Young HJ, Mehta TS, Herman C, Wang F, Rimmer JH. The effects of M2M and adapted yoga on physical and psychosocial outcomes in people with multiple sclerosis. Arch Phys Med Rehabil. 2019 Mar;100(3):391–400. doi: 10.1016/j.apmr.2018.06.032. S0003-9993(18)30924-9
    1. Recognizing Adolescence. World Health Organization. [2019-09-02]. .
    1. Global recommendations on physical activity for health. World Health Organization. 2010. Jan 1, [2022-09-27]. .
    1. Lai B, Cederberg K, Vanderbom KA, Bickel CS, Rimmer JH, Motl RW. Characteristics of adults with neurologic disability recruited for exercise trials: a secondary analysis. Adapt Phys Activ Q. 2018 Oct 01;35(4):476–97. doi: 10.1123/apaq.2017-0109.
    1. Bezyak JL, Sabella S, Hammel J, McDonald K, Jones RA, Barton D. Community participation and public transportation barriers experienced by people with disabilities. Disabil Rehabil. 2020 Nov;42(23):3275–83. doi: 10.1080/09638288.2019.1590469.
    1. Rimmer JH, Mehta T, Wilroy J, Lai B, Young HJ, Kim Y, Pekmezi D, Thirumalai M. Rationale and design of a scale-up project evaluating responsiveness to home exercise and lifestyle tele-health (SUPER-HEALTH) in people with physical/mobility disabilities: a type 1 hybrid design effectiveness trial. BMJ Open. 2019 Mar 30;9(3):e023538. doi: 10.1136/bmjopen-2018-023538. bmjopen-2018-023538
    1. Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised Gross Motor Function Classification System. Dev Med Child Neurol. 2008 Oct;50(10):744–50. doi: 10.1111/j.1469-8749.2008.03089.x. doi: 10.1111/j.1469-8749.2008.03089.x.DMCN3089
    1. Verschuren O, Wiart L, Hermans D, Ketelaar M. Identification of facilitators and barriers to physical activity in children and adolescents with cerebral palsy. J Pediatr. 2012 Sep;161(3):488–94. doi: 10.1016/j.jpeds.2012.02.042.S0022-3476(12)00245-4
    1. Bandura A. Health promotion by social cognitive means. Health Educ Behav. 2004 Apr;31(2):143–64. doi: 10.1177/1090198104263660.
    1. King GA. CAPE/PAC Manual: Children's Assessment of Participation and Enjoyment & Preferences for Activities of Children. San Antonio, TX, USA: PsychCorp; 2004.
    1. Capio CM, Sit CH, Abernethy B, Rotor ER. Physical activity measurement instruments for children with cerebral palsy: a systematic review. Dev Med Child Neurol. 2010 Oct;52(10):908–16. doi: 10.1111/j.1469-8749.2010.03737.x. doi: 10.1111/j.1469-8749.2010.03737.x.DMCN3737
    1. Clanchy KM, Tweedy SM, Boyd R. Measurement of habitual physical activity performance in adolescents with cerebral palsy: a systematic review. Dev Med Child Neurol. 2011 Jun;53(6):499–505. doi: 10.1111/j.1469-8749.2010.03910.x. doi: 10.1111/j.1469-8749.2010.03910.x.
    1. HealthMeasures Neuro-QoL: List of Pediatric Measures. National Institutes of Health. 2019. [2022-09-27]. .
    1. HealthMeasures Neuro-QoL: Validation. National Institutes of Health. 2019. [2022-09-27]. .
    1. Gross PH, Bailes AF, Horn SD, Hurvitz EA, Kean J, Shusterman M, cerebral palsy research network Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative. Dev Med Child Neurol. 2018 Dec;60(12):1278–84. doi: 10.1111/dmcn.13984. doi: 10.1111/dmcn.13984.
    1. Charmaz K. Constructing Grounded Theory. 2nd edition. London, UK: Sage Publications; 2014.
    1. Fletcher AJ. Applying critical realism in qualitative research: methodology meets method. Int J Soc Res Methodol. 2016 Feb 29;20(2):181–94. doi: 10.1080/13645579.2016.1144401.
    1. Smith B, Sparkles AC. Routledge Handbook of Qualitative Research in Sport and Exercise. Milton Park, UK: Taylor & Francis; 2016.
    1. Verschuren O, Ketelaar M, Gorter JW, Helders PJ, Uiterwaal CS, Takken T. Exercise training program in children and adolescents with cerebral palsy: a randomized controlled trial. Arch Pediatr Adolesc Med. 2007 Nov;161(11):1075–81. doi: 10.1001/archpedi.161.11.1075.161/11/1075
    1. O'Connell NS, Dai L, Jiang Y, Speiser JL, Ward R, Wei W, Carroll R, Gebregziabher M. Methods for analysis of pre-post data in clinical research: a comparison of five common methods. J Biom Biostat. 2017 Feb 24;8(1):1–8. doi: 10.4172/2155-6180.1000334.
    1. Vickers AJ, Altman DG. Statistics notes: analysing controlled trials with baseline and follow up measurements. BMJ. 2001 Nov 10;323(7321):1123–4. doi: 10.1136/bmj.323.7321.1123.
    1. Lai BW, Rimmer JH, Yates A, Jeter A, Young HJ, Thirumalai M, Mehta T, Wilroy J. Critical factors influencing the decision to enroll in a physical activity intervention among a predominant group of adults with spinal cord injury: a grounded theory study. Spinal Cord. 2021 Jan;59(1):17–25. doi: 10.1038/s41393-020-0530-7. 10.1038/s41393-020-0530-7
    1. Lee EC, Whitehead AL, Jacques RM, Julious SA. The statistical interpretation of pilot trials: should significance thresholds be reconsidered? BMC Med Res Methodol. 2014 Mar 20;14:41. doi: 10.1186/1471-2288-14-41. 1471-2288-14-41
    1. Thomson SB. Sample size and grounded theory. Thomson, SB (2010). Grounded theory-sample size. J Admin Gov. 2010 Sep 14;5(1):45–52. doi: 10.4135/9781412959193.n112.
    1. Young HJ, Mehta T, Herman C, Baidwan NK, Lai B, Rimmer JH. The effects of a movement-to-music (M2M) intervention on physical and psychosocial outcomes in people poststroke: a randomized controlled trial. Arch Rehabil Res Clin Transl. 2021 Dec;3(4):100160. doi: 10.1016/j.arrct.2021.100160. S2590-1095(21)00074-4
    1. Colquitt G, Kiely K, Caciula M, Li L, Vogel RL, Moreau NG. Community-based upper extremity power training for youth with cerebral palsy: a pilot study. Phys Occup Ther Pediatr. 2020;40(1):31–46. doi: 10.1080/01942638.2019.1636924.

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