title: Physical therapy services received by individuals with spinal muscular atrophy (SMA).
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Neurology, Columbia University Medical Center, New York, NY, USA.|Department of Rehabilitation and Regenerative Medicine, Columbia University Medical Center, New York, NY, USA.
authors.forename: Sally
authors.initials: S
authors.lastname: Dunaway
authors.affiliation: Department of Neurology, Columbia University Medical Center, New York, NY, USA.|Department of Rehabilitation and Regenerative Medicine, Columbia University Medical Center, New York, NY, USA.
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Montes
authors.affiliation: Department of Neurology, University of Rochester, Rochester, NY, USA.|Department of Biostatistics and Computational Biology, University of Rochester, Rochester, NY, USA.
authors.forename: Michael P
authors.initials: MP
authors.lastname: McDermott
authors.affiliation: Department of Neurology, University of Rochester, Rochester, NY, USA.
authors.forename: William
authors.initials: W
authors.lastname: Martens
authors.affiliation: Program in Physical Therapy, Columbia University, New York, NY, USA.
authors.forename: Annie
authors.initials: A
authors.lastname: Neisen
authors.affiliation: Department of Physical Therapy, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Allan M
authors.initials: AM
authors.lastname: Glanzman
authors.affiliation: Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Pasternak
authors.affiliation: Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
authors.forename: Susan
authors.initials: S
authors.lastname: Riley
authors.affiliation: Department of Neurology, Columbia University Medical Center, New York, NY, USA.
authors.forename: Douglas
authors.initials: D
authors.lastname: Sproule
authors.affiliation: Department of Neurology, Columbia University Medical Center, New York, NY, USA.
authors.forename: Claudia
authors.initials: C
authors.lastname: Chiriboga
authors.affiliation: Nemours Children's Hospital, Orlando, FL, USA.
authors.forename: Richard
authors.initials: R
authors.lastname: Finkel
authors.affiliation: Departments of Neurology, Pediatrics, The Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Gihan
authors.initials: G
authors.lastname: Tennekoon
authors.affiliation: Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
authors.forename: Basil
authors.initials: B
authors.lastname: Darras
authors.affiliation: Department of Neurology, Columbia University Medical Center, New York, NY, USA.
authors.forename: Darryl
authors.initials: D
authors.lastname: De Vivo
authors.affiliation: Department of Neurology, University of Rochester, Rochester, NY, USA.
authors.forename: Shree
authors.initials: S
authors.lastname: Pandya
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009134:Muscular Atrophy, Spinal / Q000534:rehabilitation*; D026741:Physical Therapy Modalities; D055815:Young Adult
keywords: Spinal muscular atrophy; physical therapy; rehabilitation; standard of care