Physical therapy services received by individuals with spinal muscular atrophy (SMA)

Issue title: Advances in Neuromuscular Diseases

Guest editors: Dennis J. Matthews

Article type: Research Article

Authors: Dunaway, Sally^{a; b; *} | Montes, Jacqueline^{a; b} | McDermott, Michael P.^{c; d} | Martens, William^c | Neisen, Annie^e | Glanzman, Allan M.^f | Pasternak, Amy^g | Riley, Susan^g | Sproule, Douglas^a | Chiriboga, Claudia^a | Finkel, Richard^h | Tennekoon, Gihanⁱ | Darras, Basil^g | De Vivo, Darryl^a | Pandya, Shree^c

Affiliations: [a] Department of Neurology, Columbia University Medical Center, New York, NY, USA | [b] Department of Rehabilitation and Regenerative Medicine, Columbia University Medical Center, New York, NY, USA | [c] Department of Neurology, University of Rochester, Rochester, NY, USA | [d] Department of Biostatistics and Computational Biology, University of Rochester, Rochester, NY, USA | [e] Program in Physical Therapy, Columbia University, New York, NY, USA | [f] Department of Physical Therapy, The Children's Hospital of Philadelphia, Philadelphia, PA, USA | [g] Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA | [h] Nemours Children's Hospital, Orlando, FL, USA | [i] Departments of Neurology, Pediatrics, The Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, PA, USA

Correspondence: [*] Corresponding author: Sally Dunaway, 180 Fort Washington Ave, 5^th Floor, New York, NY 10032, USA. Tel.: +1 212 304 5207; Fax: +1 212 305 9263; E-mail:sld2120@columbia.edu

Abstract: PURPOSE: 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.

Keywords: Spinal muscular atrophy, physical therapy, rehabilitation, standard of care

DOI: 10.3233/PRM-160360

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 9, no. 1, pp. 35-44, 2016