ArticleHealth and quality of life outcomes2020
Modelling disease course in amyotrophic lateral Sclerosis: pseudo-longitudinal insights from cross-sectional health-related quality of life data.
Article in Health and quality of life outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed.
- Plasma cardiac troponin T complements neurofilament light chain by reflecting disease phase and phenotypic variation in amyotrophic lateral sclerosis.Journal of neurology · 2026Article
- Quantification of amyotrophic lateral sclerosis (ALS) disease accumulation with T1-weighted high-resolution magnetic resonance imaging: validation in an independent cohort.Journal of neurology · 2026Article
- Relational personhood: the missing link for evaluating clinical impact of brain-computer interfaces.Brain communications · 2026Article
- Improving the measurement properties of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): deriving a valid measurement total for the calculation of change.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2024Article
- Health-related quality of life across disease stages in patients with amyotrophic lateral sclerosis: results from a real-world survey.Journal of neurology · 2024Article
- T1-weighted MRI texture analysis in amyotrophic lateral sclerosis patients stratified by the D50 progression model.Brain communications · 2024Article
- ALSFRS-R-SE: an adapted, annotated, and self-explanatory version of the revised amyotrophic lateral sclerosis functional rating scale.Neurological research and practice · 2022Article
- If it's information, it's not "bias": a scoping review and proposed nomenclature for future response-shift research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Dynamic and progressive changes in thalamic functional connectivity over the first five years of psychosis.Molecular psychiatry · 2022Article
- Classification of amyotrophic lateral sclerosis by brain volume, connectivity, and network dynamics.Human brain mapping · 2022Article
- Disease aggressiveness signatures of amyotrophic lateral sclerosis in white matter tracts revealed by the D50 disease progression model.Human brain mapping · 2021Article
- Patterns of grey and white matter changes differ between bulbar and limb onset amyotrophic lateral sclerosis.NeuroImage. Clinical · 2021Article
- Blood-Brain Barrier Disruption Is Not Associated With Disease Aggressiveness in Amyotrophic Lateral Sclerosis.Frontiers in neuroscience · 2021Article
- Cerebrospinal Fluid Neurofilament Light Chain (NfL) Predicts Disease Aggressiveness in Amyotrophic Lateral Sclerosis: An Application of the D50 Disease Progression Model.Frontiers in neuroscience · 2021Article
- Triage of Amyotrophic Lateral Sclerosis Patients during the COVID-19 Pandemic: An Application of the D50 Model.Journal of clinical medicine · 2020Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAmyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurodegenerative disorder with limited robust disease-modifying therapies presently available. While several treatments are aimed at improving health-related quality of life (HRQoL), longitudinal data on how QoL changes across the disease course are rare.
objectivesTo explore longitudinal changes in emotional well-being and HRQoL in ALS.
methodsOf the 161 subjects initially recruited, 39 received 2 subsequent follow-up assessments at 6 and 12 months after baseline. The ALS Functional Rating Scale-Revised (ALSFRS-R) was used to assess physical impairment. HRQoL was assessed using the ALS Assessment Questionnaire (ALSAQ-40). The D50 disease progression model was applied to explore longitudinal changes in HRQoL.
resultsPatients were primarily in the early semi-stable and early progressive model-derived disease phases. Non-linear correlation analyses showed that the ALSAQ-40 summary index and emotional well-being subdomain behaved differently across disease phases, indicating that the response shift occurs early in disease. Both the ALSFRS-R and ALSAQ-40 significantly declined at 6- and 12-monthly follow-ups.
conclusionALSAQ-40 summary index and emotional well-being change comparably over both actual time and model-derived phases, indicating that the D50 model enables pseudo-longitudinal interpretations of cross-sectional data in ALS.
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