[Questionnaire survey conducted on the parents of patients with spinal muscular atrophy type 1 in Japan regarding switch devices, language development, upper extremity function and QOL].

OBJECTIVE

As information required to rehabilitate, we aimed to clarify the use of switch devices, language development, upper extremity function, and quality of life (QOL) in patients with spinal muscular atrophy (SMA) type 1 in Japan.

METHODS

A questionnaire survey was conducted on the parents of these patients.

RESULTS

A total of 48 completed questionnaires were collected. The median age of patients with SMA type 1 was 8 years (range, 13 months to 27 years). The patients used a switch device were 46.5%. Their language development was delayed, and their voluntary movement in the distal upper extremities was relatively retained. In QOL, parents' labor and burden for the care of patients were high.

CONCLUSIONS

It is necessary to provide specialist support that contributes to the spread of communication devices, which improve their motor function, language development and overall QOL.