title: Validation of robust tools to measure sialorrhea in amyotrophic lateral sclerosis: a study in a large French cohort.
abstract: There is an unmet need for validated tools to measure sialorrhea in amyotrophic lateral sclerosis, especially to evaluate treatments. We assessed the inter-/intra-rate reviewer reliability of two scales: the Oral Secretion Scale (OSS), specifically developed for ALS patients, and the Sialorrhea Scoring Scale (SSS), initially developed for Parkinson's disease patients. Sialorrhea was rated in 69 ALS consecutive patients by four evaluators: two neurologists, one nurse and one speech therapist. Inter-rater reliability was evaluated by the light kappa coefficient and intra-rater reliability by the weighted kappa coefficient. We also compared patients' and caregivers' answers. Results demonstrated that the two scales present a high inter-/intra-rater reliability: weighted kappas were 0.85 for both scales and light kappas 0.89 for the OSS and 0.88 for the SSS. Both scales also showed a good intra-profession reliability (OSS kappa = 0.84; SSS kappa = 0.79) and agreement between patients' and caregivers' answers. The SSS showed a higher responsiveness compared to OSS. In conclusion, both Oral Secretion Scale and Sialorrhea Scoring Scale are reliable tools to measure sialorrhea in ALS patients. Because of the wide range of salivation degrees, SSS may be more sensitive as a tool to evaluate treatments in patients with severe hypersialorrhea.
authors.affiliation: Département des Maladies du Système Nerveux, Groupe Hospitalier Pitié Salpêtrière, Paris, France.
authors.forename: Maya
authors.initials: M
authors.lastname: Abdelnour-Mallet
authors.forename: Sophie
authors.initials: S
authors.lastname: Tezenas Du Montcel
authors.forename: Pamela A
authors.initials: PA
authors.lastname: Cazzolli
authors.forename: Avi
authors.initials: A
authors.lastname: Assouline
authors.forename: Christine
authors.initials: C
authors.lastname: Pointon
authors.forename: Nathalie
authors.initials: N
authors.lastname: Leveque
authors.forename: Henri
authors.initials: H
authors.lastname: Dominique
authors.forename: Hassan
authors.initials: H
authors.lastname: Elmazria
authors.forename: Michaela
authors.initials: M
authors.lastname: Rothmayer
authors.forename: Timothee
authors.initials: T
authors.lastname: Lenglet
authors.forename: Gaelle
authors.initials: G
authors.lastname: Bruneteau
authors.forename: Nadine
authors.initials: N
authors.lastname: le Forestier
authors.forename: Sylvie
authors.initials: S
authors.lastname: Delanian
authors.forename: Jesus
authors.initials: J
authors.lastname: Gonzalez-Bermejo
authors.forename: François
authors.initials: F
authors.lastname: Salachas
authors.forename: Benjamin Rix
authors.initials: BR
authors.lastname: Brooks
authors.forename: Pierre François
authors.initials: PF
authors.lastname: Pradat
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis* / Q000453:epidemiology*; D015331:Cohort Studies; D005260:Female; D005602:France / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D012720:Severity of Illness Index; D012798:Sialorrhea / Q000175:diagnosis* / Q000453:epidemiology*; D011795:Surveys and Questionnaires / Q000592:standards*