Carolyn Anne Young1, John Ealing2, Christopher McDermott3, Tim Williams4, Ammar Al-Chalabi5, Tahir Majeed6, Georgina Burke7, Ashwin Pinto7, David Dick8, Kevin Talbot9, Timothy Harrower10, Jannette Walsh11, Siddharthan Chandran12, C Oliver Hanemann13, Roger Mills1, Alan Tennant14. 1. a Walton Centre NHS Foundation Trust , University of Liverpool , Liverpool , UK. 2. b Department of Neurology , Salford Royal Hospital Foundation Trust , Salford , UK. 3. c Department of Neuroscience , University of Sheffield , Sheffield , UK. 4. d Department of Neurology , Royal Victoria Infirmary , Newcastle upon Tyne , UK. 5. e Department of Clinical Neuroscience , Institute of Psychiatry, MRC Centre for Neurodegeneration Research, King's College London , London , UK. 6. f Department of Neurology , Lancashire Teaching Hospitals NHS Foundation Trust , Preston , UK. 7. g Wessex Neurological Centre , Southampton , UK. 8. h Department of Neurology , Norfolk and Norwich University Hospital , Norwich , UK. 9. i Nuffield Department of Clinical Neurosciences , University of Oxford, John Radcliffe Hospital , Oxford , UK. 10. j Department of Neurology , Royal Devon & Exeter Foundation Trust Hospital , Exeter , UK. 11. k Staffordshire and Stoke on Trent Partnership NHS Trust , Stoke-on-Trent , UK. 12. l Department of Neurology , Royal Infirmary of Edinburgh , Edinburgh , UK. 13. m Plymouth University Peninsula Schools of Medicine and Dentistry , Plymouth , UK , and. 14. n Swiss Paraplegic Research , Nottwil , Switzerland.
Abstract
Objectives: Using the Wilson and Cleary model linking clinical variables to quality of life, we explored the associations between physical and psychological factors, disability, perceived health and quality of life in ALS/MND. Methods: The ongoing UK study of Trajectories of Outcomes in Neurological Conditions (TONiC) recruited participants with ALS/MND to complete a questionnaire pack including demographic factors and several patient reported outcome measures (PROMs); a clinician provided data on disease onset type and duration since diagnosis. All PROMs were transformed from ordinal raw scores to interval-scaled latent estimates via the Rasch measurement model. Results: Data from 636 patients were analyzed; mean age 65.1 years (SD 10.7), 61.3% male. Median duration since diagnosis was 11.2 months (IQR 4.6-29.9; range 0.4-295.9 months); 67.3% had limb and 27.3% bulbar onset disease. Symptoms such as breathlessness and fatigue, along with most domains of activity limitations, were shown to vary by onset type. A series of models illustrated the importance of physical functioning and anxiety upon quality of life, with breathlessness and fatigue having indirect effects. The models were invariant for gender and onset type. Conclusions: This large study highlights the importance of functional status and anxiety as key variables influencing quality of life in ALS/MND. The nature and diversity of factors, both physical and psychological, which have been shown to influence the quality of life of people with ALS/MND provide strong evidence in support of the widespread implementation of multidisciplinary care.
Objectives: Using the Wilson and Cleary model linking clinical variables to quality of life, we explored the associations between physical and psychological factors, disability, perceived health and quality of life in ALS/MND. Methods: The ongoing UK study of Trajectories of Outcomes in Neurological Conditions (TONiC) recruited participants with ALS/MND to complete a questionnaire pack including demographic factors and several patient reported outcome measures (PROMs); a clinician provided data on disease onset type and duration since diagnosis. All PROMs were transformed from ordinal raw scores to interval-scaled latent estimates via the Rasch measurement model. Results: Data from 636 patients were analyzed; mean age 65.1 years (SD 10.7), 61.3% male. Median duration since diagnosis was 11.2 months (IQR 4.6-29.9; range 0.4-295.9 months); 67.3% had limb and 27.3% bulbar onset disease. Symptoms such as breathlessness and fatigue, along with most domains of activity limitations, were shown to vary by onset type. A series of models illustrated the importance of physical functioning and anxiety upon quality of life, with breathlessness and fatigue having indirect effects. The models were invariant for gender and onset type. Conclusions: This large study highlights the importance of functional status and anxiety as key variables influencing quality of life in ALS/MND. The nature and diversity of factors, both physical and psychological, which have been shown to influence the quality of life of people with ALS/MND provide strong evidence in support of the widespread implementation of multidisciplinary care.
Authors: Elisa Aust; Katharina Linse; Sven-Thomas Graupner; Markus Joos; Daniel Liebscher; Julian Grosskreutz; Johannes Prudlo; Thomas Meyer; René Günther; Sebastian Pannasch; Andreas Hermann Journal: J Neurol Date: 2022-07-06 Impact factor: 6.682