The consensus statement for standard of care in SMA recommends multidisciplinary
medical care including physical therapy (PT) services. To date there are no reports
regarding the implementation of these recommendations and the type of care or services
received by individuals with SMA. The purpose of this study is to describe the PT
services received by individuals with SMA.
METHODS:
Interviews were conducted with patients or their caregivers at the Pediatric
Neuromuscular Clinical Research (PNCR) Network sites from October 2011 to September
2012. Questions included information about clinical status of the patient,
sociodemographic profile of the patient or caregiver, and PT services received in the
past year, including the setting, frequency, duration and type of PT, and therapies
administered by caregivers.
RESULTS:
Eighty-six percent of 105 participants reported receiving PT services, some in
multiple settings: 62% in the neuromuscular clinic, 38% at school, 34% at home, and 13%
in an outpatient clinic. Greater frequency of PT services received was associated with
younger age and inability to walk, but not SMA type.
CONCLUSION:
This is the first multicenter study documenting PT services received by patients with
SMA. Further research is needed to better understand the impact of PT services on the
natural history of SMA.
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