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Development of a tool to guide clinical decision making in the management of physical function in ambulant adults with cerebral palsy

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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.

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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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Carr, E., & Worth, A. (2001). The use of the telephone interview for research. Journal of Research in Nursing, 6(1), 511–524.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Peterson, M., Ryan, J., Hurvitz, E., & Mahmoudi, E. (2015). Chronic conditions in adults with cerebral palsy. Journal of American Medical Association, 314, 2303–2305.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Vogtle, L. (2009). Pain in adults with cerebral palsy: impact and solutions. Developmental Medicine and Child Neurology, 51 Suppl 4, 113–121.

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Authors and Affiliations

  1. Physiotherapy Department, Monash University, Frankston, VIC, 3199, Australia

    Prue Morgan & Cylie Williams

  2. Peninsula Health, Frankston, VIC, 3199, Australia

    Cylie Williams

  3. Centre for Developmental Disability Health Victoria, Monash Health Community, Dandenong, VIC, 3175, Australia

    Jane Tracy

  4. Occupational Therapy Department, Monash University, Frankston, VIC, 3199, Australia

    Rachael McDonald

Authors
  1. Prue Morgan
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  2. Cylie Williams
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  3. Jane Tracy
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  4. Rachael McDonald
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Corresponding author

Correspondence to Prue Morgan.

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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.

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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

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  • DOI: https://doi.org/10.1007/s10882-016-9509-x

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