ArticleJournal of neurology2020
Patient reported outcome measures (PROMs) in amyotrophic lateral sclerosis.
Article in Journal of neurology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 3 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
12 citing papers in PubMed, 3 syntheses or guidelines pooled it, 27 citations in OpenAlex.
- The nature of fatigue in amyotrophic lateral sclerosis: a systematic review and meta-analysis.Acta neurologica Belgica · 2025Pooled it
- The psychometric properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system in neurorehabilitation populations: a systematic review.Journal of patient-reported outcomes · 2024Pooled it
- Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Pooled it
- Improvement of fatigue in generalised myasthenia gravis with zilucoplan.Journal of neurology · 2024Trial
- Review
- Health-Related Quality of Life, Psychological Health, and Patient-Reported Outcomes of Amyotrophic Lateral Sclerosis Patients in China.Brain sciences · 2025Article
- Tracking amyotrophic lateral sclerosis disease progression using passively collected smartphone sensor data.Annals of clinical and translational neurology · 2024Article
- Wearable device and smartphone data quantify ALS progression and may provide novel outcome measures.NPJ digital medicine · 2023Article
- Article
- Qualitative measures that assess functional disability and quality of life in ALS.Health and quality of life outcomes · 2022Review
- Fatigue in Chinese Patients With Amyotrophic Lateral Sclerosis: Associated Factors and Impact on Quality of Life.Frontiers in neurology · 2022Article
- Using patient-reported symptoms of dyspnea for screening reduced respiratory function in patients with motor neuron diseases.Journal of neurology · 2020Article
Corrections and comments
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Authors and funding
12 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivePatient reported outcome measures (PROMs) can provide researchers with a direct view of patients' experiences. They are becoming increasingly important tools for evaluating clinical care and research outcomes. There has been little data on the application of PROMs to amyotrophic lateral sclerosis (ALS) care. The objective of this study was to examine the feasibility of PROM collection in an academic ALS clinic and to measure correlations between PROMs and standard ALS clinical outcome measures.
methodsPROMs were gathered from tablet-based surveys offered to adult patients in the waiting room, prior to ALS outpatient clinic visits. They included a demographic section and two validated surveys: the patient reported outcome measurement information system (PROMIS-10), which generates physical health and mental health subscores, and the quality of life in neurological disorders-fatigue subscale (NeuroQoL-fatigue). The ALS functional rating scale-revised (ALSFRS-R) and other ALS measures were collected by clinic staff as part of routine clinical care.
resultsPROMIS-10 physical and mental health scores correlated positively with the ALSFRS-R score (physical: R = 0.85, p < 0.001; mental: R = 0.58, p = 0.02). NeuroQoL-fatigue scores were inversely correlated with the ALSFRS-R scores-higher fatigue correlated with lower function (R = - 0.72, p = 0.004).
conclusionCollection of PROMs is feasible in the context of routine ALS care. PROM scores are highly correlated with validated ALS outcome measures.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.