title: The impact of physical impairment on emotional well-being in ALS.
abstract: There has been evidence that subjective quality of life in patients with amyotrophic lateral sclerosis (ALS) is comparatively good, unrelated to the state of physical functioning, so called 'disability paradox'. Other studies show weak to moderate correlations between disease severity and emotional well-being. Our aim was to analyse the impact of physical impairment on emotional well-being when assessed disease-specifically and seen through the patient's eyes with additional clinical evaluation. In 121 patients emotional functioning was evaluated by the ALS Assessment Questionnaire (ALSAQ-40). Physical status was assessed by the ALS Functional Rating Scale-Extension (ALSFRS-EX) and Borg dyspnoea scales and by clinical examination (muscle strength and pulmonary function). Multiple regression and correlation analyses were performed. Results showed that physical impairment and progression rate of physical deterioration had a significant impact and explained some variance in emotional well-being (adjusted R(2) = 0.22). Pulmonary function and the sense of dyspnoea correlated significantly on a weak to moderate level with emotional well-being. In conclusion, disease-specific patient- reported outcome measurement instruments revealed a moderate but distinct impact of physical impairment on emotional well-being. This study challenges the 'disability paradox' and has relevant findings that can support the timely delivery of care for ALS patients.
authors.affiliation: Department of Neurology, Otto-von-Guericke University Magdeburg , Magdeburg , Germany.
authors.forename: Susanne
authors.initials: S
authors.lastname: Abdulla
authors.forename: Stefan
authors.initials: S
authors.lastname: Vielhaber
authors.forename: Katja
authors.initials: K
authors.lastname: Kollewe
authors.forename: Judith
authors.initials: J
authors.lastname: Machts
authors.forename: Hans-Jochen
authors.initials: HJ
authors.lastname: Heinze
authors.forename: Reinhard
authors.initials: R
authors.lastname: Dengler
authors.forename: Susanne
authors.initials: S
authors.lastname: Petri
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications* / Q000523:psychology*; D001526:Behavioral Symptoms / Q000175:diagnosis / Q000209:etiology*; D018450:Disease Progression; D004644:Emotions / Q000502:physiology*; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D008171:Lung Diseases / Q000209:etiology*; D008297:Male; D008875:Middle Aged; D012189:Retrospective Studies; D012720:Severity of Illness Index; D013223:Statistics as Topic; D011795:Surveys and Questionnaires; D014797:Vital Capacity; D055815:Young Adult
keywords: ALSAQ-40; Amyotrophic lateral sclerosis; emotional well-being; functional rating scale; patient-reported outcome measure