What Mobility Devices Are Patients With Duchenne Muscular Dystrophy Receiving And What Are Their Views On This Equipment?


Real World Data - Disease registries, natural history, post marketing surveillance

Poster Number: 160


Rebecca Jorne, PT, DPT, Jill Blitz


1. Children's Hospital Los Angeles, 2. Children's Hospital Los Angeles

Background: There are no guidelines as to when and what type of mobility device should be ordered for patients with Duchenne Muscular Dystrophy (DMD). There are no studies looking at what patients have received and how they felt about the equipment. It is imperative that patients receive the best equipment at the appropriate time.
Objective: The purpose of this study was to assess what mobility devices patients with DMD are receiving and to understand their views on their current equipment.
Methods: A paper survey was given to patients with a confirmed diagnosis of DMD at their neuromuscular clinic visit.
Results: Fifty patients ages 4-18 years old (Mean=12.2, SD=3.9) completed the survey. The first manual wheelchair received by patients varied: manual, self -propel wheelchair (61.2%), adaptive stroller (16.3%), manual wheelchair with power assist wheels (6.1%), manual, tilt in space wheelchair (2%), and other (6.1%). Thirty-nine patients reported having had a manual, self-propel wheelchair. The average age they received this wheelchair was 8.6 +/- 3.1 years old. Patients were asked how they used the wheelchair: 73.7% were able to propel it independently, however, 35.3% were able to propel it for less than 1 year and only 2.9% could propel it for more than 5 years. The majority of patients reported that they were able to propel for less than 10 minutes (77.7%) and only 52.9% used their wheelchair every day. Thirty-two patients reported having had a power wheelchair. The average age they received the chair was 11.2 +/- 2.8 years. One hundred percent of these patients reported the power wheelchair made them more independent with 83.9% using it every day.
Conclusion: There is variability in what equipment is ordered for patients with DMD. Patients tended to receive manual, self-propel wheelchairs at younger ages, but they were not able to propel independently for long periods of time. Once patients received power mobility, they reported increased use and independence.