Activities of daily living (ADL) structure of patients with Duchenne muscular dystrophy, including adults

Objective: To study the activities of daily living (ADL) structure of patients with Duchenne muscular dystrophy (DMD). Design: Cross-sectional survey. Subjects: Seventy-two patients with DMD (mean [SD] age, 17.2 [8.1] years), recruited in 160-bed regional center for neuromuscular disease. Methods: We assessed 72 participants with the Functional Independence Measure (FIM ^SM), and determined the difficulty order of the FIM^SM items with the percentage of patients who were independent (6 or 7) for each FIM item (% independence). Results: The ADL of patients with DMD had an order in terms of difficulty. For the motor subscale, the most difficult item was stairs, and the easiest item was locomotion. On the cognitive subscale, problem solving was the most difficult item. When we compared item difficulty between patients <15 years of age and those ≥ 15 years, the % independence was lower in the older age group for all motor items. The decrease in the % independence of the eating item with age was significant; however bladder management was well maintained. Conclusions: ADL of patients with DMD has a specific difficulty order. The order of difficulty is based on the relative level of independence/dependence. The difficulty order was maintained, although the structure of ADL changed with age.