title: Health utility decreases with increasing clinical stage in amyotrophic lateral sclerosis.
abstract: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease typically causing death within three years. Understanding the impact of disease on patients using health utility at different stages of ALS would allow meaningful cost-benefit analysis of new potential therapies. A common health-related quality of life measurement, developed and validated for the UK, is the EQ-5D. Using clinical trial data from the LiCALS study, we calculated health utility using the EQ-5D for each King's ALS clinical stage from 214 patients. We analysed whether health utility, and other health-related measures, significantly changed between each of the clinical stages. Results showed that mean health utility decreased by 0.487 (the scale runs from 1 to - 0.594) between clinical stages 2A and 4. Emotional states, measured using the Hospital Anxiety and Depression Scale (HADS), showed worsening depression and anxiety scores as ALS progressed. Age of onset, disease onset, gender and treatment group were not predictors of EQ-5D, depression or anxiety. In conclusion, increasing severity of King's ALS Clinical Stage is associated with a progressive decrease in EQ-5D health utility. This is useful for cost-benefit analysis of new therapies and validates this ALS clinical staging system.
authors.affiliation: Department of Clinical Neuroscience, Institute of Psychiatry , King's College London, London.
authors.forename: Ashley R
authors.initials: AR
authors.lastname: Jones
authors.forename: Naheed
authors.initials: N
authors.lastname: Jivraj
authors.forename: Rubika
authors.initials: R
authors.lastname: Balendra
authors.forename: Caroline
authors.initials: C
authors.lastname: Murphy
authors.forename: Joanna
authors.initials: J
authors.lastname: Kelly
authors.forename: Marie
authors.initials: M
authors.lastname: Thornhill
authors.forename: Carolyn
authors.initials: C
authors.lastname: Young
authors.forename: Pamela J
authors.initials: PJ
authors.lastname: Shaw
authors.forename: P Nigel
authors.initials: PN
authors.lastname: Leigh
authors.forename: Martin R
authors.initials: MR
authors.lastname: Turner
authors.forename: I Nick
authors.initials: IN
authors.lastname: Steen
authors.forename: Paul
authors.initials: P
authors.lastname: McCrone
authors.forename: Ammar
authors.initials: A
authors.lastname: Al-Chalabi
mesh_terms: D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications / Q000191:economics / Q000523:psychology* / Q000628:therapy*; D001007:Anxiety / Q000175:diagnosis / Q000209:etiology; D003362:Cost-Benefit Analysis; D003863:Depression / Q000175:diagnosis / Q000209:etiology; D004311:Double-Blind Method; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011237:Predictive Value of Tests; D011788:Quality of Life / Q000523:psychology*; D016032:Randomized Controlled Trials as Topic; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
keywords: Clinical staging; EQ-5D; amyotrophic lateral sclerosis; health utility; quality of life