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Review

Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities

by
Rafael S. Rodriguez-Torres
1,2,*,
David Uher
2,3,
Emma L. Gay
4,
Giorgia Coratti
5,6,
Sally Dunaway Young
7,
Annemarie Rohwer
8,
Robert Muni Lofra
9,
Darryl C. De Vivo
1,
Michio Hirano
1,
Nancy W. Glynn
4 and
Jacqueline Montes
2
1
Department of Neurology, Columbia University Irving Medical Center, New York, NY 10032, USA
2
Department of Rehabilitation and Regenerative Medicine, Columbia University Irving Medical Center, New York, NY 10032, USA
3
Department of Biobehavioral Sciences, Teachers College, Columbia University, New York, NY 10115, USA
4
Department of Epidemiology, School of Public Health, University of Pittsburgh, Pittsburgh, PA 15213, USA
5
Pediatric Neurology Unit, Catholic University, 00135 Rome, Italy
6
Centro Clinico Nemo, U.O.C. Neuropsichiatria Infantile Fondazione Policlinico Universitario Agostino Gemelli IRCCS, 00168 Rome, Italy
7
Department of Neurology and Clinical Neurosciences, Stanford University School of Medicine, Palo Alto, CA 94305, USA
8
Dubowitz Neuromuscular Centre, UCL Great Ormond Street Institute of Child Health, London WC1N 1EH, UK
9
The John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne NE1 7RU, UK
*
Author to whom correspondence should be addressed.
J. Clin. Med. 2023, 12(10), 3458; https://doi.org/10.3390/jcm12103458
Submission received: 30 March 2023 / Revised: 10 May 2023 / Accepted: 12 May 2023 / Published: 14 May 2023
(This article belongs to the Special Issue Neuromuscular Disorders and Complications: In the Challenge Lies a Solution)
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Abstract

Fatigue, a common symptom, together with the characteristic of performance fatigability, are well-documented features of SMA that impact quality of life and function. Importantly, establishing associations between multidimensional self-reported fatigue scales and patient performance has proven difficult. This review was conducted to evaluate the various patient-reported fatigue scales applied in SMA, with the objective of considering the limitations and advantages of each measure. Variable use of fatigue-related nomenclature, including conflicting terminology interpretation, has affected assessment of physical fatigue attributes, specifically perceived fatigability. This review encourages the development of original patient-reported scales to enable perceived fatigability assessment, providing a potential complementary method of evaluating treatment response.
Keywords: fatigue; fatigability; spinal muscular atrophy; patient-reported outcome measure; perceived fatigability fatigue; fatigability; spinal muscular atrophy; patient-reported outcome measure; perceived fatigability
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MDPI and ACS Style

Rodriguez-Torres, R.S.; Uher, D.; Gay, E.L.; Coratti, G.; Dunaway Young, S.; Rohwer, A.; Muni Lofra, R.; De Vivo, D.C.; Hirano, M.; Glynn, N.W.; et al. Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities. J. Clin. Med. 2023, 12, 3458. https://doi.org/10.3390/jcm12103458

AMA Style

Rodriguez-Torres RS, Uher D, Gay EL, Coratti G, Dunaway Young S, Rohwer A, Muni Lofra R, De Vivo DC, Hirano M, Glynn NW, et al. Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities. Journal of Clinical Medicine. 2023; 12(10):3458. https://doi.org/10.3390/jcm12103458

Chicago/Turabian Style

Rodriguez-Torres, Rafael S., David Uher, Emma L. Gay, Giorgia Coratti, Sally Dunaway Young, Annemarie Rohwer, Robert Muni Lofra, Darryl C. De Vivo, Michio Hirano, Nancy W. Glynn, and et al. 2023. "Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities" Journal of Clinical Medicine 12, no. 10: 3458. https://doi.org/10.3390/jcm12103458

APA Style

Rodriguez-Torres, R. S., Uher, D., Gay, E. L., Coratti, G., Dunaway Young, S., Rohwer, A., Muni Lofra, R., De Vivo, D. C., Hirano, M., Glynn, N. W., & Montes, J. (2023). Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities. Journal of Clinical Medicine, 12(10), 3458. https://doi.org/10.3390/jcm12103458

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