Background
Patients with rare diseases have traditionally met a low level of knowledge about their diagnosis in contact with the Norwegian healthcare system, locally and regionally. In order to get more equality and high-quality health services to patients with rare diseases, the healthcare system has been restructured on a national level in Norway. The Norwegian National Advisory Unit on Rare Diseases (NKSD) was organised by uniting nine centres in 2014. The National Neuromuscular Centre Norway (NMK), University Hospital North Norway in Tromsø is one of the centres. It is an advisory and information centre, as well as a clinical centre with multidisciplinary clinical staff. Three physiotherapists (PTs) specialised in neurological physiotherapy work at the centre. They share 1/1 physiotherapy position at the centre, working clinically with other neurological patient groups at the hospital the reminding time. From 2014, the NMK PTs have worked strategically in order to increase knowledge about rare hereditary neuromuscular diseases among Norwegian PTs.
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 hereditary neuromuscular disorders nationwide.
Methods
The NMK PTs provide assessment and treatment to patients with rare hereditary neuromuscular diseases, primarily slow-progressing muscular dystrophies (limb-girdle muscular dystrophy, facioscapulohumeral muscular dystrophy and other muscular dystrophies with symptom debut in adolescence or adulthood), spinal muscular atrophy and hereditary peripheral neuropathies. NMK is a national centre with patients from all over Norway, aged from 14 and above. They are referred to the national centre by their general practitioner. The centre’s PTs offer a 2-day assessment and/or a 2-week treatment trial, where treatment approach and potential is explored. The 2-day assessment is made in close cooperation with neurologists and also other members of the NMK team, e.g. occupational therapist, social worker, pathologist or neurophysiologist, if needed.
Figure 1. NMK base their clinic on evidence-based practice (EBP).
(Source: http://guides.mclibrary.duke.edu/)
NMK base their clinic on evidence based practice (EBP) (). There is some research regarding training, but very little research is available on physiotherapeutical approaches to patients with hereditary neuromuscular disorders. To our knowledge, only one small study has evaluated the effect of hands-on treatment to patients with limb-girdle muscular dystrophy [Citation1]. Due to lack of research on the area, NMK base their clinical practice and supervision on evaluation received through clinical experience, standardised pre- and post-treatment testing of patients, and patient’s feedback on standardised questionnaires.
Local PTs commonly request what exactly they should and should not do to achieve the best results in patient treatment. The patient consultations found the basis of the NMK PTs’ clinical experience with neuromuscular diseases, optimising assessment and handling skills. The regular hands-on treatment and patient guidance in training provides experience and knowledge essential for the quality in supervision of local PTs, patients and relatives, individualised to each patient. All patients receive a written report with assessment, movement analysis, guidance and supervision for future treatment and training. Vast distances reduce the possibilities for professional visits. Hence, NMK PTs organise video conferences with the patient’s local health providers if requested. All patients participating in the individual 2-week treatment programme are filmed during testing and treatment sessions, and are offered to take home video clips of individual physiotherapy treatment recommended for use by the local PT. All video clips, test results and patients’ feedback are stored on a secure research platform, ready for use in research purposes.
The centre’s PTs also arrange network conferences and clinical courses regarding pathology, assessment, treatment and training, for PTs nationwide and for rehabilitation institutions. Furthermore, they share knowledge through presentations at conferences and a physiotherapy educational institution.
An e-learning programme has been developed about living with long-term mechanical ventilation, and other topics are planned (http://www.sjelden.no/). At present, the PTs at the centre are in the process of developing e-learning courses on neuromuscular diseases, physical activity and training for patients with neuromuscular diseases and physiotherapy for neuromuscular diseases.
The specialised centres in NKSD have a joint national web platform (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 (https://www.facebook.com/nmkunn/).
Results
Patients report highly variable physiotherapy services and often experience a low level of knowledge about rare neuromuscular diseases among PTs in the communities.
Outreach activity from NMK’s PTs contributes to increased knowledge about physiotherapy to patients with rare hereditary neuromuscular diseases and provides 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 the 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.
Research to evaluate the effect of the measures taken by National Neuromuscular Centre Norway, in order to share knowledge and achieve equality and high-quality physiotherapy services to patients with hereditary neuromuscular diseases, is needed.
Conclusions
In recent years, new arenas for shared physiotherapy knowledge concerning neuromuscular diseases have been developed, e.g. clinical courses, PTs’ network, e-learning and video conferences. As of present 118 PTs from all health regions, working with children and/or adults, have signed into the network, in order to keep up to date on current knowledge, and to receive invitations to courses and conferences. Knowledge of the field is increasing in PTs working in the community and rehabilitation institutions, but there are still difficulties related to time and funding in the healthcare system to enable PTs to take these arenas into use. Future research should evaluate the effects of NMK’s strategy regarding shared physiotherapy knowledge.
Implications
A national resource centre with skilled PTs is incremental to develop and share clinical knowledge in a field of rare hereditary neuromuscular diseases to local healthcare providers.
Different platforms for knowledge sharing, both virtual and through other channels, seem important to reach local community-based PTs.
Though community PTs show great interest in the measures taken by NMK to share knowledge and are motivated to learn and improve their clinical practice, the healthcare system is still not fully facilitating the possibilities for local PTs to use NMK’s outreach platforms.
Research to evaluate the effects of NMK’s strategy regarding shared physiotherapy knowledge is required. Qualitative data could be collected through interviews with patients and local PTs. Furthermore, there is a considerable lack of research regarding the effect of physiotherapy treatment to patients with rare hereditary neuromuscular diseases, possibly due to challenges in methodology with small diagnosis groups.
Disclosure statement
No potential conflict of interest was reported by the authors.
Reference
- Oygard K, Haestad H, Jørgensen L. Physiotherapy, based on the Bobath concept, may influence the gait pattern in persons with limb-girdle muscle dystrophy: a multiple case series study. Physiother Res Int. 2011;16:20–31.