A study financed by the AFM-Téléthon sought to identify the main positioning criteria guaranteeing the health and quality of life of adult wheelchair users with type 2 proximal spinal muscular atrophy (SMA type 2) or Duchenne muscular dystrophy (DMD):
- The expert consensus study was conducted using the Delphi method, with the participation of 74 experts with an opinion of interest: 31 healthcare professionals (occupational therapists, PRM doctors and orthopaedic surgeons), 21 wheelchair users with SMA type 2 and 22 with DMD.
- Participants answered four sets of questions via electronic questionnaires.
- While in the first round of questions, the opinions of healthcare professionals were divided on the similarity of needs between the two diseases, as the consensus grew, these opinions converged to recognise that a majority of these needs were common to both diseases (75%).
- As the interviews progressed, everyone agreed on six key criteria: comfort, access to the joystick whatever the position, pain prevention, pressure sore prevention, stability and the use of electrical seating functions.
This study shows that using an electric wheelchair creates a population of users in their own right who share the same main principles of postural installation and use.
However, healthcare professionals were less convinced of the importance of electric seating functions than patients, probably because of the additional costs involved or the waiting times for funding for this type of wheelchair.
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