The development of a pilot tool to assist primary care providers in identifying risk and optimising physical function in ambulant adults with cerebral palsy

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Background/Objectives: The health disorders experienced in adults ageing with cerebral palsy (CP) frequently differ from those encountered in the general population and in those ageing with acquired disability in terms of prevalence, age of onset, rate of progression, degree of severity and presenting manifestations. These disorders are also more likely to be multiple and complex in those with CP. Although around 90% of adolescents with CP are ambulant entering adulthood, many experience premature decline in mobility and function resulting in adverse consequences and potential for increased need for care and support. Adults with CP have identified challenges in accessing timely and appropriate services to meet their health needs. Primary care practitioners are typically responsible for providing advice and health services to adults with CP, yet frequently do not have awareness of or ready access to evidence to guide decision making. Study Design: Instrument development. Study Participants and Setting: Fifteen expert and generalist practitioners providing a health related service for adults with a diagnosis of CP were recruited from both the public and private health sectors to participate in a modified Delphi study. Feedback from three adults with cerebral palsy to provide consumer input to the final version of the pilot tool was also sought. Materials/Methods: A qualitative analysis of transcripts from audiotaped semi‐structured interviews with participants was undertaken. Firstly, a comprehensive list of defined problems was identified, secondly, options for management were explored, thirdly, suitable outcome measures were proposed and finally referral processes were considered. Responses were synthesised, and a second round of feedback from practitioners was sought. Information from relevant systematic reviews and consumer feedback was incorporated into the final version of the instrument. Results: The majority of practitioners who participated were physiotherapists (n = 7), highly experienced (>10 years, n = 8), with eleven participants providing services through publicly funded assessment and intervention multi‐disciplinary clinics. Seventeen problems were identified as being relevant to consider when providing health care to ambulant adults with CP. The top ranked issues for inclusion in the instrument were mobility change, function, fatigue, pain and falls. Support for the inclusion of spasticity/contracture, medication, feet/footwear, and continence was also strong. Suggested options for management, either research evidence‐based or expert‐consensus, was provided with possible suitable outcome measures proposed. A flow chart to assist decision making was developed. Conclusions/Significance: Primary care practitioners need information to assist in the provision of quality health care for ambulant adults with CP. This study has provided content for an instrument to assist primary care providers in the identification of risk, and delivery of evidence based care for ambulant adults with CP. The instrument is now ready for piloting to assist further refinement of content.
Original languageEnglish
Pages (from-to)29-30
Number of pages2
JournalDevelopmental Medicine and Child Neurology
Issue numberS5
Publication statusPublished - Oct 2015

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