Online monitoring of focal spasticity treatment with botulinum toxin in people with chronic stroke or hereditary spastic paraplegia: a feasibility study
DOI:
https://doi.org/10.2340/jrm.v55.6572Keywords:
stroke, hereditary spastic paraparesis, spasticity, feasibility studies, internet-based intervention, electronic health recordAbstract
Objective: To investigate the feasibility and usability of an online spasticity monitoring tool amongst people with hereditary spastic paraplegia or chronic stroke receiving botulinum toxin treatment, and their healthcare providers.
Methods: Mixed methods cohort study, measuring recruitment success and adherence to the monitoring in 3 rehabilitation institutions. In addition, the System Usability Scale (SUS) and interviews with patients and their healthcare providers were used for quantitative and qualitative analysis, respectively. A deductive directed content analysis was used for qualitative evaluation.
Results: Of the 19 persons with hereditary spastic paraplegia and 24 with stroke who enrolled in the study, recruitment success and adherence were higher amongst people with hereditary spastic paraplegia compared with stroke. Usability was found “marginal” by rehabilitation physicians and “good” by patients and physical therapists (SUS scores 69, 76, and 83, respectively). According to all participant groups, online monitoring potentially contributes to spasticity management if it is tailored to the actual needs and capabilities of patients, and if it can easily be integrated into the daily/working routines of all users.
Conclusion: Online monitoring of spasticity in people with hereditary spastic paraplegia or stroke receiving treatment with botulinum toxin may be feasible, provided that the monitoring tool is tailored to the needs of all users.
LAY ABSTRACT
This study investigated recruitment success and adherence to an online spasticity monitoring tool amongst people with hereditary spastic paraplegia or stroke and their healthcare providers. Usability was evaluated with a questionnaire and interviews. Twenty-four persons with stroke and 19 with hereditary spastic paraplegia participated through 3 rehabilitation institutions. The hereditary spastic paraplegia group was more willing to participate and their adherence to online monitoring was higher than the stroke group. Usability was scored “marginal” by rehabilitation physicians, and “good” by people with spasticity and their physical therapists. The interviews showed that online monitoring may contribute to better spasticity management if it is tailored to the actual needs and capabilities of people with spasticity, and if it can easily be integrated into daily/working routines of all users. Online monitoring of spasticity seems to be feasible. Tailoring the monitoring tool to patients’ needs and capabilities, and the professionals’ routines may further improve feasibility and usability.
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Williams G, Singer BJ, Ashford S, Hoare B, Hastings-Ison T, Fheodoroff K, et al. A synthesis and appraisal of clinical practice guidelines, consensus statements and Cochrane systematic reviews for the management of focal spasticity in adults and children. DisabilRehabil 2022; 44: 509–519. DOI: 10.1080/09638288.2020.1769207. DOI: https://doi.org/10.1080/09638288.2020.1769207
Pandyan AD, Gregoric M, Barnes MP, Wood D, Van Wijck F, Burridge J, et al. Spasticity: clinical perceptions, neurological realities and meaningful measurement. Disability and rehabilitation 2005; 27: 2–6. DOI: 10.1080/09638280400014576 DOI: https://doi.org/10.1080/09638280400014576
Esquenazi A, Novak I, Sheean G, Singer BJ, Ward AB. International consensus statement for the use of botulinum toxin treatment in adults and children with neurological impairments–introduction. European journal of neurology: the official journal of the European Federation of Neurological Societies 2010; 17: 1–8. DOI: 10.1111/j.1468-1331.2010.03125.x. DOI: https://doi.org/10.1111/j.1468-1331.2010.03125.x
Demetrios M, Khan F, Turner-Stokes L, Brand C, McSweeney S. Multidisciplinary rehabilitation following botulinum toxin and other focal intramuscular treatment for post-stroke spasticity. The Cochrane database of systematic reviews 2013; 6. DOI: 10.1002/14651858.CD009689.pub2. DOI: https://doi.org/10.1002/14651858.CD009689.pub2
Bakheit AM. The pharmacological management of post-stroke muscle spasticity. Drugs & aging 2012; 29: 941–947. DOI: 10.1007/s40266-012-0034-z. DOI: https://doi.org/10.1007/s40266-012-0034-z
Gracies JM. Pathophysiology of spastic paresis. II: Emergence of muscle overactivity. Muscle & nerve 2005; 31: 552–571. DOI: 10.1002/mus.20285. DOI: https://doi.org/10.1002/mus.20285
Kerstens HCJW, Satink T, Nijkrake MJ, De Swart BJM, Nijhuis-van der Sanden MWG, Van der Wees PJ, et al. Experienced consequences of spasticity and effects of botulinum toxin injections: a qualitative study amongst patients with disabling spasticity after stroke. Disability and rehabilitation 2021; 43: 368$1–$2695. DOI: 10.1080/09638288.2020.1746843. DOI: https://doi.org/10.1080/09638288.2020.1746843
Kerstens HCJW, Satink T, Nijkrake MJ, De Swart BJM, Van Lith BJH, Geurts ACH, et al. Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia. Disability and rehabilitation 2020; 42: 3744–3751. DOI: 10.1080/09638288.2019.1610084. DOI: https://doi.org/10.1080/09638288.2019.1610084
Fink JK. Hereditary spastic paraplegia: clinico-pathologic features and emerging molecular mechanisms. Acta Neuropathologica 2013; 126: 307–328. DOI: 10.1007/s00401-013-1115-8. DOI: https://doi.org/10.1007/s00401-013-1115-8
Hankey GJ. Stroke. Lancet 2017; 389: 641–654. DOI: 10.1016/S0140-6736(16)30962-X. DOI: https://doi.org/10.1016/S0140-6736(16)30962-X
Elkamil AI, Andersen GL, Hagglund G, Lamvik T, Skranes J, Vik T. Prevalence of hip dislocation among children with cerebral palsy in regions with and without a surveillance programme: a cross sectional study in Sweden and Norway. BMC musculoskeletal disorders 2011; 12: 1–7. DOI: 10.1186/1471-2474-12-284. DOI: https://doi.org/10.1186/1471-2474-12-284
Colantonio S, Govoni L, Dellaca RL, Martinelli M, Salvetti O, Vitacca M. Decision Making Concepts for the Remote, Personalized Evaluation of COPD Patients' Health Status. Methods of information in medicine 2015; 54: 240–247. DOI: 10.3414/ME13-02-0038. DOI: https://doi.org/10.3414/ME13-02-0038
Williams JR. The Declaration of Helsinki and public health. Bulletin of the World Health Organization 2008; 86: 650–651. DOI: S0042-96862008000800022. DOI: https://doi.org/10.2471/BLT.08.050955
Wilkinson MD, Dumontier M, Aalbersberg IJ, Appleton G, Axton M, Baak A, et al. The FAIR Guiding Principles for scientific data management and stewardship. Scientific data 2016; 3: 1–9. DOI: 10.1038/sdata.2016.18. DOI: https://doi.org/10.1038/sdata.2016.18
Borsci S, Federici S, Lauriola M. On the dimensionality of the System Usability Scale: a test of alternative measurement models. Cognitive processing 2009; 10: 193–197. DOI: 10.1007/s10339-009-0268-9. DOI: https://doi.org/10.1007/s10339-009-0268-9
Bangor A, Kortum PT, Miller JT. An empirical evaluation of the System Usability Scale. International Journal of Human–Computer Interaction 2008; 24: 574–594. DOI: 10.1080/10447310802205776. DOI: https://doi.org/10.1080/10447310802205776
Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. The European journal of general practice 2018; 24: 9–18. DOI: 10.1080/13814788.2017.1375091. DOI: https://doi.org/10.1080/13814788.2017.1375091
Krueger RA, Casey MA. Focus groups a practical guide for applied research. 5th ed. Los Angeles: SAGE Publications Inc.; 2015.
Berg BL, Lune H. Qualitative research methods for the social sciences. 8 ed. New Jersey: Hanson, K.; 2012.
Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implementation science 2009; 4: 1–15. DOI: 10.1186/1748-5908-4-50. DOI: https://doi.org/10.1186/1748-5908-4-50
Block VA, Pitsch E, Tahir P, Cree BA, Allen DD, Gelfand JM. Remote Physical Activity Monitoring in Neurological Disease: A Systematic Review. PloS one 2016; 11: e0154335. DOI: 10.1371/journal.pone.0154335. DOI: https://doi.org/10.1371/journal.pone.0154335
Bashi N, Karunanithi M, Fatehi F, Ding H, Walters D. Remote Monitoring of Patients With Heart Failure: An Overview of Systematic Reviews. Journal of medical Internet research 2017; 19: e18. DOI: 10.2196/jmir.6571. DOI: https://doi.org/10.2196/jmir.6571
van Lith BJH, Kerstens HCJW, van den Bemd LAC, der Sanden MWGN, Weerdesteyn V, Smeets RJEM, et al. Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands. Orphanet journal of rare diseases 2020; 15: 1–10. DOI: 10.1186/s13023-020-1338-4. DOI: https://doi.org/10.1186/s13023-020-1338-4
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Copyright (c) 2023 Hans C. J. W. Kerstens, Maarten J. Nijkrake, Bert J. M. de Swart, Ria W. G. Nijhuis-van der Sanden, Marije Vos-van de Hulst, Gery J. Bos, Alexander C. H. Geurts, Philip J. van der Wees
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