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H26 EHDN physiotherapy working group: understanding the perspectives of the HD community regarding the presentation and dissemination of the physiotherapy practice guidelines
  1. Lisa Muratori1,
  2. Lori Quinn2,
  3. Nora Fritz3,
  4. Travis Cruickshank4,
  5. on behalf of the European Huntington’s Disease Network Physiotherapy Working Group, Community Workstream
  1. 1Department of Physical Therapy, School of Health Professions, Stony Brook University, USA
  2. 2Department of Biobehavioral Science, Teachers College, Columbia University, USA
  3. 3Departments of Health Care Sciences and Neurology, Wayne State University, USA
  4. 4Centre for Precision Health, School of Medical and Health Sciences, Edith Cowan University, Australia


Background The EHDN Physiotherapy Working Group (PWG) has developed clinical guidelines for physiotherapists working with people with Huntington’s Disease (HD). Little is known regarding how these guidelines have translated into the community and how such information might best be accessed by HD community stakeholders.

Aim To determine best practice for the dissemination of clinical information, including the physiotherapy clinical guidelines, to non-clinical members of the HD community, including patients, caregivers, and home health attendants.

Methods PWG members developed a flowchart of current avenues for providing patients and caregivers with accessible information regarding best practice for physical therapy. Tools included a range of web-based, social media and traditional paper materials including fact sheets and brochures.

Outcomes Members of the Community Workstream determined that there was a need for greater input from stakeholders to determine the most appropriate forms of dissemination. A protocol for a co-design workshop was developed to maximize participation of consumers and clinicians in jointly preparing materials for translation of the clinical practice guidelines to the community.

Conclusion More information is needed to understand how best to share information developed in the scientific community and improve implementation of best practice in the community. Barriers and facilitators to accessing healthcare material are not known. This workshop may serve as a template to support global dissemination of the HD PT clinical guidelines.

  • Physical therapy
  • community engagement
  • patient preference
  • co-design
  • clinical practice guidelines

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