SHARING PHYSIOTHERAPY KNOWLEDGE ABOUT RARE DISEASES - THE STRATEGY OF NATIONAL NEUROMUSCULAR CENTRE, NORWAY

¹University Hospital North Norway, Physiotherapy Dept., Tromsø, Norway, ²University Hospital North Norway, National Neuromuscular Centre Norway, Tromsø, Norway

Background: Patients with rare diseases have traditionally met a low level of knowledge about their diagnosis in contact with the health care system, locally and regionally. In order to get more equality and high quality health services to patients with rare diseases, the health care system has been restructured on a national level in Norway. The Norwegian National Advisory Unit for Rare Disorders (NKSD) was organized by uniting 9 centres in 2014. The National Neuromuscular Centre Norway (NMK) in Tromsø is one of the centres. It is an advisory and information centre, as well as a clinical centre with multidisciplinary staff. Three physiotherapists (PTs) specialized in neurological physiotherapy work at the centre.
The physiotherapists are providing assessment and treatment to patients with rare hereditary neuromuscular diseases.

Purpose: This special interest report aims to present actions taken by NMK to provide knowledge about principals for high quality physiotherapy service to patients with neuromuscular disorders nationwide.

Methods: The centre’s PTs share knowledge through presentations at conferences and a physiotherapy educational institution. Furthermore, network conferences and clinical courses regarding pathology, assessment, treatment and training, are arranged for PTs nationwide and for rehabilitation institutions. An E-learning program has been developed about living with long-term mechanical ventilation, and other topics are planned. Vast distances reduces the possibilities for professional visits, hence NMK PTs organize video conferences with the patient’s local health providers if requested. All patients get video clips of individual physiotherapy treatment recommended for use by the local PT. The specialized centres in NKSD have a joint web platform nationally (www.nksd.no), which has simplified obtaining updated diagnose specific knowledge about rare disorders. NMK posts information concerning physiotherapy on their own web page and Facebook page.

Results: Patients report highly variable physiotherapy services, and unfortunately experience a low level of knowledge about rare neuromuscular diseases amongst PTs in the communities. Outreach activity from NMK’s PTs contributes to increased knowledge, and provide support and areas of interaction for patients, relatives and local health professionals. Various arenas are now offering theoretical and clinical knowledge about rare disorders, but use of it depends on system-related factors like time and financial resources, opportunities for participation in courses, and the management’s and each PT’s motivation for professional updating on the field.

Conclusion(s): In recent years new arenas for shared physiotherapy knowledge concerning neuromuscular diseases have been developed e.g. clinical cources, physiotherapists network, e-learning and video conferences. Knowledge of the field is increasing in community PTs, but there are still difficulties related to time and funding in the health-care system to enable PTs to take these arenas into use.

Implications: - A national resource centre with skilled PTs is incremental to develop and share clinical knowledge in a field of rare neuromuscular diseases to local health-care providers. - Different platforms for knowledge sharing, both virtual and through other channels, seem important to reach local PTs. - The health-care system is still not fully facilitating the possibilities for local PTs to use NMK’s outreach platforms.

Funding acknowledgements: No funding.

Topic: Globalisation: health systems, policies & strategies

Ethics approval: No ethics approval required.

All authors, affiliations and abstracts have been published as submitted.