VP.07 Lived experience of functioning of patients with nemaline myopathy and related disorders in Finland

Nemaline myopathy (NM) and related disorders (NMr) are ultrarare congenital myopathies with severity varying from mild muscle- or muscle group-specific weakness to a neonatally lethal disorder. Medical and biomedical studies of NM and NMr have dominated the research field, whereas little is known about coping in everyday life among persons with NM. To study the lived experience of physical, psychological and social functioning of adult NM and NMr patients in Finland, we conducted a survey using items primarily from PROMIS ® (Patient Reported Outcomes Measurement Information System) questionnaires.
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research