Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities
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 diffi...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-05-01
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| Series: | Journal of Clinical Medicine |
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| Online Access: | https://www.mdpi.com/2077-0383/12/10/3458 |
| _version_ | 1797599700053917696 |
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| author | Rafael S. Rodriguez-Torres David Uher Emma L. Gay Giorgia Coratti Sally Dunaway Young Annemarie Rohwer Robert Muni Lofra Darryl C. De Vivo Michio Hirano Nancy W. Glynn Jacqueline Montes |
| author_facet | Rafael S. Rodriguez-Torres David Uher Emma L. Gay Giorgia Coratti Sally Dunaway Young Annemarie Rohwer Robert Muni Lofra Darryl C. De Vivo Michio Hirano Nancy W. Glynn Jacqueline Montes |
| author_sort | Rafael S. Rodriguez-Torres |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-11T03:38:00Z |
| format | Article |
| id | doaj.art-e43e523ff048411faa1a2f89a389637d |
| institution | Directory Open Access Journal |
| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-03-11T03:38:00Z |
| publishDate | 2023-05-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-e43e523ff048411faa1a2f89a389637d2023-11-18T01:53:22ZengMDPI AGJournal of Clinical Medicine2077-03832023-05-011210345810.3390/jcm12103458Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and OpportunitiesRafael S. Rodriguez-Torres0David Uher1Emma L. Gay2Giorgia Coratti3Sally Dunaway Young4Annemarie Rohwer5Robert Muni Lofra6Darryl C. De Vivo7Michio Hirano8Nancy W. Glynn9Jacqueline Montes10Department of Neurology, Columbia University Irving Medical Center, New York, NY 10032, USADepartment of Rehabilitation and Regenerative Medicine, Columbia University Irving Medical Center, New York, NY 10032, USADepartment of Epidemiology, School of Public Health, University of Pittsburgh, Pittsburgh, PA 15213, USAPediatric Neurology Unit, Catholic University, 00135 Rome, ItalyDepartment of Neurology and Clinical Neurosciences, Stanford University School of Medicine, Palo Alto, CA 94305, USADubowitz Neuromuscular Centre, UCL Great Ormond Street Institute of Child Health, London WC1N 1EH, UKThe John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne NE1 7RU, UKDepartment of Neurology, Columbia University Irving Medical Center, New York, NY 10032, USADepartment of Neurology, Columbia University Irving Medical Center, New York, NY 10032, USADepartment of Epidemiology, School of Public Health, University of Pittsburgh, Pittsburgh, PA 15213, USADepartment of Rehabilitation and Regenerative Medicine, Columbia University Irving Medical Center, New York, NY 10032, USAFatigue, 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.https://www.mdpi.com/2077-0383/12/10/3458fatiguefatigabilityspinal muscular atrophypatient-reported outcome measureperceived fatigability |
| spellingShingle | Rafael S. Rodriguez-Torres David Uher Emma L. Gay Giorgia Coratti Sally Dunaway Young Annemarie Rohwer Robert Muni Lofra Darryl C. De Vivo Michio Hirano Nancy W. Glynn Jacqueline Montes Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities Journal of Clinical Medicine fatigue fatigability spinal muscular atrophy patient-reported outcome measure perceived fatigability |
| title | Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities |
| title_full | Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities |
| title_fullStr | Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities |
| title_full_unstemmed | Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities |
| title_short | Measuring Fatigue and Fatigability in Spinal Muscular Atrophy (SMA): Challenges and Opportunities |
| title_sort | measuring fatigue and fatigability in spinal muscular atrophy sma challenges and opportunities |
| topic | fatigue fatigability spinal muscular atrophy patient-reported outcome measure perceived fatigability |
| url | https://www.mdpi.com/2077-0383/12/10/3458 |
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