Article Text
Abstract
Background The EHDN Physiotherapy Working Group (EHDN PWG) aims to share resources to support physiotherapy practice guidelines across clinical settings. A subgroup of the EHDN PWG, the HD specialist clinic work stream, focuses on supporting people particularly in pre-manifest and early stages of HD.
Following publication of Physiotherapy Guidelines for Huntington’s disease (HD) in 2020, a subsequent global survey, conducted by the EHDN PWG, identified a need to develop accessible resources to facilitate translation of these guidelines into clinical practice.
Aim To develop user-friendly resources for persons with HD, physiotherapists, and other health care providers who treat people with HD in clinical specialist/outpatient settings to facilitate implementation, awareness and use of physiotherapy clinical guidelines in practice.
Methods The HD clinic work stream developed patient and health care provider education fact sheets focused on care of people with HD in pre-manifest and early disease stages aligned with the guidelines. Topics covered by these fact sheets are 1) barriers preventing physical activity and exercise participation in people with HD in the pre-manifest and early disease stages, and strategies to promote physical activity 2) gait and balance training, and 3) aerobic and strength training. The fact sheets were reviewed by EHDN PWG members for content suitability. Final versions will be made available to people with HD and healthcare providers.
Conclusion We present educational resources to support patients and health care providers in specialist and outpatient settings to translate the physiotherapy clinical practice guidelines to people in pre-manifest and early stages of HD.