Assessing upper extremity capacity as a potential indicator of needs related to household activities for rehabilitation services in people with myotonic dystrophy type 1

A cross-sectional study was set in an outpatient neuromuscular clinic where 200 adults with a confirmed diagnosis of DM1 (121 women; mean age: 47 y) were selected from the registry of a neuromuscular clinic to participate. Housing-related activities were assessed using the “housing” section of the Assessment of Life Habits Questionnaire (LIFE-H). The upper extremity assessment included grip strength (Jamar dynamometer), lateral pinch strength (pinch gauge), gross dexterity (Box and Block Test) and fine dexterity (Purdue Pegboard Test). Correlations with the LIFE-H item “housing” were stronger for grip and lateral strength (r = 0.62; 0.61). When difficulties were present in “housing”, the cut-off score associated with lateral pinch strength was 4.8 kg (sensitivity: 75.6%; specificity: 79.2%). Grip strength presented cut-off scores that clinically differed by gender. In conclusion, potential indicator of needs related to household activities for rehabilitation services with valid assessment tools were developed for people with DM1 who experience difficulties in housing-related activities. These criteria will assist health professionals in their attempt to refer DM1 patients to rehabilitation services at the appropriate time.