Evidence Based Position Paper on Physical and Rehabilitation Medicine Practice for People With Muscular Dystrophies
European Journal of Physical and Rehabilitation Medicine
Lazovic, M., Nikolic, D., et al. (2021).
European Journal of Physical and Rehabilitation Medicine, 57(6), 1036-1044.
<div>This systematic position paper provides recommendations for physical and rehabilitation medicine (PRM) physicians regarding the care of individuals with muscular dystrophy. This article summary includes recommendations specifically relevant to the field of speech-language pathology. </div>
Union of European Medical Specialists - Physical and Rehabilitation Medicine
<div>The rehabilitation of patients with muscular dystrophy should be performed by a multi-professional team that:</div>
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<ul>
<li>collaborates in a multi-, inter- or transdisciplinary way across all relevant rehabilitation settings (SoR Grade A; SoE Grade IV);</li>
<li>follows the patient from a young age/first onset of symptoms, during transition to adulthood, and into later stages of the disease process (SoR Grade B; SoE Grade IV);</li>
<li>takes into consideration the patient's physical and psychological conditions, their needs in regards to nursing and medical requirements, the patient's rehabilitation goals and status, home and community settings, and care partner situation (SoR Grade B; SoE Grade IV);</li>
<li>regularly conducts team meetings in order to propose, discuss, and update individuals rehabilitation plans (SoR Grade B; SoE Grade IV); and</li>
<li>includes expert rehabilitation physicians, neurologists, orthopedic surgeons, psychiatrists, internal medicine specialists, cardiologists, pneumologists, pediatricians and other medical specialists together with physiotherapists, exercise physiologists, occupational therapists, speech and language therapist, nurses, social workers, prosthetists, orthotists, rehabilitation engineers, vocational counsellors, behavioral therapists, dieticians, nutritionists, and social care services or community-based workers, with mandatory inclusion of family members or caregivers (SoR Grade A; SoE Grade III).</li>
</ul>
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<div>Lip strengthening exercises should be considered in children with myotonic dystrophy type 1. These should be considered as a complement to, not a replacement of, speech therapy and/or dysphagia therapy (SoR Grade B; SoE Grade IV). </div>
<div>"It is recommended that PRM physicians prescribe an optimal and adequate rehabilitation program whenever rehabilitation is needed... within the multiprofessional and interdisciplinary team in every stage of disease" (p. 1039; SoR: A; SoE: III). These interventions should be prescribed in a timely manner whenever there are indications throughout the care continuum for persons with muscular dystrophy (SoR: B; SoE: III). PRM physicians, alongside the multidisciplinary team, should define the overall aims and strategies for rehabilitation interventions (SoR: A; SoE: IV). </div>
<div>It is recommended that rehabilitation services are implemented depending on the phase of muscular dystrophy progression within the following settings:</div>
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<ul>
<li>acute care settings including intensive care units;</li>
<li>post-acute care settings;</li>
<li>specialized rehabilitation centers;</li>
<li>at home; and</li>
<li>in the community.</li>
</ul>
<div>The main purpose of the rehabilitation program should be to reduced activity limitations and participation restrictions in specific environments and to prevent further functional decline. The introduction of telepractice as a supplemental tool in multidisciplinary care of these patients might be advantageous (SoR: A; SoE: IV). </div>
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