Abstract
The health disorders experienced by adults ageing with cerebral palsy (CP) are unique and differ from those encountered in the general population and in those ageing with acquired disability. This study aimed to design a clinical decision making tool to enhance person-centred care in the primary care sector for adults with CP. Using participatory action research methodology, fifteen practitioners from a range of health disciplines were interviewed regarding the management of ambulant adults with CP. Thematic analysis of interview transcripts enabled generation of a flow chart and assessment/intervention table to guide management. Recommendations were supported with available evidence. Stakeholder review (three adults with CP) of the pilot version was sought. Issues, prompting questions, suggested options for management, possible outcome measures, suggested referrals and level of evidence were included as key elements of the tool. Seventeen health issues were identified, with particular emphasis on the need to implement strategies to proactively manage mobility decline and falls. A clinical decision making tool to assist the management of ambulant adults with CP by primary care practitioners was developed. It prompts practitioners to consider both acute care issues and health promotion aspects of physical function, mobility and falls prevention. Utility may be enhanced by an electronic version of the tool.
Similar content being viewed by others
References
Access Economics. (2008). The Economic Impact of Cerebral Palsy in Australia in 2007. http://www.cpresearch.org.au/pdfs/access_economics_report.pdf Accessed 23 February 2016.
Australian Commission on Safety and Quality in Health Care. (2015). Falls prevention resources. http://www.safetyandquality.gov.au/our-work/falls-prevention/falls-prevention-resources/ Accessed 23 February 2016.
Batchelor, F., Hill, K., Mackintosh, S., & Said, C. (2010). What works in falls prevention after stroke? : a systematic review and meta analysis. Stroke, 41, 1715–1722.
Bryan, C., & Boren, S. (2008). The use and effectiveness of electronic clinical decision support tools in the ambulatory/primary care setting: a systematic review of the literature. Journal of Innovation in Health Informatics, 16(2), 79–91.
Carr, E., & Worth, A. (2001). The use of the telephone interview for research. Journal of Research in Nursing, 6(1), 511–524.
Fletcher, A., & Marchildon, G. (2014). Using the Delphi Method for qualitative, participatory action research in health leadership. International Journal of Qualitative Methods, 13, 1–18.
Heller, T., & Sorensen, A. (2013). Promoting healthy aging in adults with developmental disabilities. Developmental Disabilities Research Reviews, 18(1), 22–30. doi:10.1002/ddrr.1125.
Hemmings, C., Gravestock, S., Pickard, M., & Bouras, N. (2006). Psychiatric symptoms and problem behaviours in people with intellectual disabilities. Journal of Intellectual Disability Research, 50, 269–276.
Hirsh, A., Gallegos, J., Gertz, K., Engel, J., & Jensen, M. (2010). Symptom burden in individuals with cerebral palsy. Journal of Rehabilitation Research and Development, 47(9), 863–875.
International Conference on Cerebral Palsy and other Childhood-onset Disabilities (2016). ICPC Program, retrieved from http://eacd2016.org/wp-content/uploads/2015/02/ICPCProgram_WEB2.pdf. Accessed 16 July 2016.
Jeglinsky, I., Surakka, J., Carlberg, E. B., & Autti-Ramo, I. (2010). Evidence on physiotherapeutic interventions for adults with cerebral palsy is sparse. A systematic review. Clinical Rehabilitation, 24(9), 771–788.
Kawamoto, K., Houlihan, C. A., Balas, E. A., & Lobach, D. F. (2005). Improving clinical practice using clinical decision support systems: a systematic review of trials to identify features critical to success., 330(7494), 765. doi:10.1136/bmj.38398.500764.8F.
Leung, G. M., Johnston, J. M., Tin, K. Y. K., Wong, I. O. L., Ho, L.-M., Lam, W. W. T., et al. (2003). Randomised controlled trial of clinical decision support tools to improve learning of evidence based medicine in medical students. British Medical Journal, 327(7423), 1090. doi:10.1136/bmj.327.7423.1090.
Maanum, G., Jahnsen, R., Stanghelle, J. K., Sandvik, L., & Keller, A. (2011). Effects of botulinum toxin A in ambulant adults with spastic cerebral palsy: A randomized double-blind placebo controlled-trial. Journal of Rehabilitation Medicine, 43, 338–347.
Manca, D., Campbell-Scherer, D., Aubrey-Bassler, K., Kandola, K., Aguilar, C., Baxter, J., et al. (2015). Developing clinical decision tools to implement chronic disease prevention and screening in primary care: the BETTER 2 program (building on existing tools to improve chronic disease prevention and screening in primary care. Implementation Science, 10, 107. doi:10.1186/s13012-015-0299-9.
Marchiori, C., Roche, N., Vuillerme, N., Zory, R., & Pradon, D. (2014). Effect of multisite botulinum toxin injections on gait quality in adults with cerebral palsy. Disability and Rehabilitation, 36, 1971–1974.
Morgan, P., & McGinley, J. (2014). Gait function and decline in adults with cerebral palsy: A systematic review. Disability & Rehabilitation, 36(1), 1–9. doi:10.3109/09638288.2013.775359.
Morgan, P., Dobson, F., & McGinley, J. (2014a). A systematic review of the efficacy of conservative interventions on the gait of ambulant adults with cerebral palsy. Journal of Developmental and Physical Disabilities. doi:10.1007/s10882–014–9385-1.
Morgan, P., Pogrebnoy, D., & McDonald, R. (2014b). Health service experiences to address mobility decline in ambulant adults ageing with cerebral palsy. Journal of Intellectual & Developmental Disability, 39(3), 282.
Morgan, P., Soh, S., & McGinley, J. (2014c). Health-related quality of life of ambulant adults with cerebral palsy and its association with falls and mobility decline: a preliminary cross sectional study. Health and Quality of Life Outcomes, 12, 132. doi:10.1186/s12955–014–0132-1.
Morgan, P., McDonald, R., & McGinley, J. (2015a). Perceived Cause, Environmental Factors, and Consequences of Falls in Adults with Cerebral Palsy: A Preliminary Mixed Methods Study. Rehabilitation Research and Practice , 9. doi:10.1155/2015/196395.
Morgan, P., Murphy, A., Opheim, A., Pogrebnoy, D., Kravtsov, S., & McGinley, J. (2015b). The safety and feasibility of an intervention to improve balance dysfunction in ambulant adults with cerebral palsy: a pilot randomized controlled trial. Clinical Rehabilitation, 29, 907–919.
Mosqueda, L. (2004). Maintaining health and function. In B. K. A. L. Mosqueda. (Ed.), Aging with a disability - What the clinician needs to know. Baltimore: The John Hopkins University Press.
National Disability Insurance Scheme (n.d.). http://www.ndis.gov.au/ Accessed 23 February 2016.
Peterson, M., Gordon, P., & Hurvitz, E. (2013). Chronic disease risk among adults with cerebral palsy: the role of premature sarcopoenia, obesity and sedentary behaviour. Obesity Reviews, 14, 171–182.
Peterson, M., Ryan, J., Hurvitz, E., & Mahmoudi, E. (2015). Chronic conditions in adults with cerebral palsy. Journal of American Medical Association, 314, 2303–2305.
Ross, S., MacDonald, M., & Bigouette, J. (2016). Effects of strength training on mobility in adults with cerebral palsy: A systematic review. Disability and Health Journal, 9, 375–384.
Slaman, J., Roebroeck, M., van der Slot, W., et al. (2014). Can a lifestyle intervention improve physical fitness in adolescents and young adults with spastic cerebral palsy? A randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 95, 1646–1655.
Sullivan, W., Berg, J., Bradley, E., Cheetham, T., Denton, R., Heng, J., et al. (2011). Primary care of adults with developmental disabilities: Canadian consensus guidelines. Canadian Family Physician, 57, 541–553.
Tinetti, M., Baker, D., McAvay, G., Claus, E., Garrett, P., Gottschalk, M., et al. (1994). A multifactorial intervention to reduce the risk of falling among elderly people living in the community. New England Journal of Medicine, 331, 821–827.
Vogtle, L. (2009). Pain in adults with cerebral palsy: impact and solutions. Developmental Medicine and Child Neurology, 51 Suppl 4, 113–121.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Funding
This study was part funded by a Monash University School of Primary Health Care seeding grant (2013).
Ethical Approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed Consent
Informed consent was obtained from all individual participants included in the study.
Conflict of Interest
Prue Morgan declares that she has no conflict of interest. Cylie Williams declares that she has no conflict of interest. Jane Tracy declares that she has no conflict of interest. Rachael McDonald declares that she has no conflict of interest.
Rights and permissions
About this article
Cite this article
Morgan, P., Williams, C., Tracy, J. et al. Development of a tool to guide clinical decision making in the management of physical function in ambulant adults with cerebral palsy. J Dev Phys Disabil 28, 785–801 (2016). https://doi.org/10.1007/s10882-016-9509-x
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10882-016-9509-x