1. Primary lateral sclerosis (PLS) functional rating scale: PLS-specific clinimetric scale
- Author
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Zachary Simmons, Codruta Chiuzan, David Walk, Stephen N. Scelsa, Bjorn Oskarsson, Nicholas J. Maragakis, Yuan Zhang, Sharon P. Nations, Ghazala Hayat, Mary Kay Floeter, Jonathan Hupf, Terry Heiman-Patterson, Christina Fournier, Brittany McHale, Yasushi Kisanuki, Daragh Heitzman, Madison Gilmore, J. Americo M. Fernandes Filho, Sabrina Paganoni, Hiroshi Mitsumoto, Lorne Zinman, Nanette C. Joyce, Lauren Elman, Omar Jawdat, Erik P. Pioro, and Eric J. Sorenson more...
- Subjects
0301 basic medicine ,Adult ,Male ,medicine.medical_specialty ,Activities of daily living ,Certification ,Physiology ,030105 genetics & heredity ,03 medical and health sciences ,Cellular and Molecular Neuroscience ,0302 clinical medicine ,Rating scale ,Physiology (medical) ,Activities of Daily Living ,Medicine ,Humans ,Primary lateral sclerosis (PLS) ,Motor Neuron Disease ,Reliability (statistics) ,Primary Lateral Sclerosis ,Aged ,Observer Variation ,business.industry ,Construct validity ,Reproducibility of Results ,Middle Aged ,medicine.disease ,Telephone ,Clinical trial ,Caregivers ,Clinical Global Impression ,Physical therapy ,Disease Progression ,Quality of Life ,Female ,Neurology (clinical) ,business ,030217 neurology & neurosurgery ,Follow-Up Studies - Abstract
Introduction Our research aim was to develop a novel clinimetric scale sensitive enough to detect disease progression in primary lateral sclerosis (PLS). Methods A prototype of the PLS Functional Rating Scale (PLSFRS) was generated. Seventy-seven participants with PLS were enrolled and evaluated at 21 sites that comprised the PLSFRS study group. Participants were assessed using the PLSFRS, Neuro-Quality of Life (QoL), Schwab-England Activities of Daily Living (ADL), and the Clinical Global Impression of Change scales. Participants completed telephone assessments at 12, 24, and 48 weeks after enrollment. Results The PLSFRS demonstrated internal consistency as well as intrarater, interrater, telephone test-retest reliability, and construct validity. Significant changes in disease progression were detected at 6 and 12 months; changes measured by the PLSFRS vs the ALSFRS-R were significantly higher. Discussion The PLSFRS is a valid tool to assess the natural history of PLS in a shorter study period. more...
- Published
- 2019