Filling the gaps in knowledge translation: Physical therapy recommendations for individuals with spinal muscular atrophy compared to standard of care guidelines |
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| Authors: | Jessica Trenkle Jessica Brugman Anne Peterson Katherine Roback Kristin J. Krosschell |
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| Affiliation: | 1. Department of Physical Therapy and Human Movement Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, United States;2. Jessica Trenkle, LLC, United States;3. Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, United States;1. Institute of Medical Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi, India;2. Department of Clinical Genetics & Genetic Counselling, Mediscan Systems, Chennai, India;3. Department of Pediatric Genetics, Amrita Institute of Medical Sciences, Kerala, India;4. Division of Genetics, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India;5. Department of Pediatrics, King Edward Memorial Hospital, Mumbai, India;6. Department of Clinical Genetics, Centre for Human Genetics, Bangalore, India;7. Department of Medical Genetics, Kasturba Medical College, Manipal Academy of Higher Education, Manipal, India;8. Medical Director, Sanofi Genzyme, India;9. Division of Medical Genetics, Department of Pediatrics, Duke University Medical Center, Durham, NC, USA;1. Pediatric Neurology, Università Cattolica del Sacro Cuore, Rome, Italy;2. Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy;3. Department of Neurology, Stanford University, Stanford, California, United States;4. The John Walton Muscular Dystrophy Research Centre, Newcastle University, Integrated Laboratory Medicine Directorate, Institute of Genetic Medicine, Newcastle Upon Tyne NHS Foundation Trust, Newcastle Upon Tyne, United Kingdom;5. Nemours Children''s Hospital, University of Central Florida College of Medicine, Orlando, United States;6. Unit of Neuromuscular and Neurodegenerative Disorders, Department of Neurosciences, IRCCS Bambino Gesù Children''s Hospital, Rome, Italy;7. Department of Child Neurology, University Hospitals Leuven, Leuven, Belgium;8. Departments of Neurology, Boston Children''s Hospital, Harvard Medical School, Boston, MA, United States;9. Center of Translational and Experimental Myology, IRCCS Istituto Giannina Gaslini, Genova, Italy;10. Neurorehabilitation Unit, University of Milan, The NEMO Clinical Center in Milan, Italy;11. Neuromuscular Unit, Neuropaediatrics Department, Institut de Recerca Hospital Universitari Sant Joan de Deu, Barcelona, Spain;12. Dubowitz Neuromuscular Centre, UCL Institute of Child Health & Great Ormond Street Hospital, London, United Kingdom;13. NIHR Great Ormond Street Hospital Biomedical Research Centre, London, United Kingdom;14. Departments of Neurology and Pediatrics, Columbia University Irving Medical Center, New York, USA;15. Departments of Rehabilitation and Regenerative Medicine and Neurology, Columbia University Irving Medical Center, New York, USA;p. Department of Clinical and Experimental Medicine and Centro Clinico Nemo Sud, University of Messina, Messina, Italy;1. Paediatric Neurology Unit, Catholic University, Rome, Italy;2. Department of Paediatrics, Child Neurology and Psychiatry, Sapienza University, Rome, Italy;3. Department of Neurology, Columbia University, New York, NY, United States;1. Pediatric Neurology, Università Cattolica del Sacro Cuore, Rome, Italy;2. Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy;3. Departments of Neurology and Pediatrics, Columbia University Irving Medical Center, New York, United States;4. Departments of Rehabilitation and Regenerative Medicine and Neurology, Columbia University Irving Medical Center, New York, United States;5. Departments of Neurology, Boston Children''s Hospital, Harvard Medical School, Boston, MA, United States;6. The John Walton Muscular Dystrophy Research Centre, Newcastle University, Integrated Laboratory Medicine Directorate, Institute of Genetic Medicine, Newcastle Upon Tyne NHS Foundation Trust, Newcastle Upon Tyne, United Kingdom;7. Department of Physical Therapy, The Children''s Hospital of Philadelphia, Philadelphia;8. Department of Neurology, Stanford University, Stanford, CA, United States;9. Dubowitz Neuromuscular Centre, UCL Institute of Child Health & Great Ormond Street Hospital, London;10. Department of Clinical and Experimental Medicine and Centro Clinico Nemo Sud, University of Messina, Messina, Italy;11. Department of Child Neurology, University Hospitals Leuven, Leuven, Belgium;12. Neuromuscular Unit, Neuropaediatrics Department, Institut de Recerca Hospital Universitari Sant Joan de Deu, Barcelona, Spain;13. Center of Translational and Experimental Myology, IRCCS Istituto Giannina Gaslini, Genova, Italy;14. Neurorehabilitation Unit, University of Milan, The NEMO Clinical Center in Milan, Italy;15. Unit of Neuromuscular and Neurodegenerative Disorders, Department of Neurosciences, IRCCS Bambino GesùChildren’s Hospital, Rome, Italy;p. Nemours Children''s Hospital, University of Central Florida College of Medicine, Orlando, United States;q. NIHR Great Ormond Street Hospital Biomedical Research Centre, London, United Kingdom |
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| Abstract: | This study describes the current landscape of physical therapy practice recommendations in the United States for children with spinal muscular atrophy (SMA) and their relationship to current SMA standard of care (SMA-SOC) guidelines. Pediatric physical therapists were surveyed to determine their knowledge of SMA-SOC guidelines, and the type, duration and frequency of intervention they recommend for children with SMA, as well as perceived barriers and facilitators to progress in physical therapy. Physical therapists recommend five key intervention areas for individuals with SMA; however discrepancies exist between the SOC recommended intervention parameters and respondents’ reported frequency and duration of recommendations. After individuals with SMA initiated disease modifying pharmacotherapies, a majority of physical therapist respondents recommended increases in both frequency and duration of interventions. Nearly all respondents reported that familiarity with SOC guidelines was beneficial to their practice. The primary facilitator to progress was parent/caregiver support, while the primary barrier was limited access to resources. Variation in practice exists regarding care for those with SMA, particularly in the areas of frequency and duration of specific interventions. These findings can guide educational initiatives, identify future research needs and further inform SMA-SOC and best-practice rehabilitation management. |
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