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Updated: Dec 27, 2025
A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis ALS
Published on: February 21, 2011
Patient reported outcome measures (PROMs) in amyotrophic lateral sclerosis
Fabiola De Marchi1, James D Berry1, James Chan2
1Healey Center for ALS, Department of Neurology, Massachusetts General Hospital, Harvard Medical School, 165 Cambridge St, Suite 600, Boston, MA, USA.
Objective:
Patient 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.
Methods:
PROMs 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.
Results:
PROMIS-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).
Conclusion:
Collection of PROMs is feasible in the context of routine ALS care. PROM scores are highly correlated with validated ALS outcome measures.
