title: Dysphagia-related quality of life in oculopharyngeal muscular dystrophy: Psychometric properties of the SWAL-QOL instrument.
abstract: The Swallowing Quality of Life instrument (SWAL-QOL) is a patient-reported outcome measure of swallowing-related quality of life (SR-QoL). Its psychometric properties in oculopharyngeal muscular dystrophy (OPMD) are not known.
  
  
  
  We administered the SWAL-QOL to U.S. OPMD Registry participants. We described SR-QoL profiles and assessed reliability and validity.
  
  
  
  The mean composite score in 113 individuals with OPMD was 54.4 ± 20.7, indicating moderate impairment. Severe impairments were observed in eating duration, burden, and fatigue scales. Internal consistency reliability of all scales was found to be satisfactory, and 9 of 10 scales demonstrated adequate test-retest reliability. Data confirmed 86% of hypotheses, supporting construct validity. The SWAL-QOL limitations in OPMD include: floor/ceiling effects in 7 of 10 scales and low specificity of sleep, fatigue, and communication scales for dysphagia.
  
  
  
  SR-QoL is reduced in OPMD. Given several limitations of the SWAL-QOL, development of an improved dysphagia-specific QoL instrument for OPMD is warranted. Muscle Nerve 56: 28-35, 2017.
authors.affiliation: Department of Neurology, MSC 10 5620, 1, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, 87131, USA.
authors.forename: Sarah
authors.initials: S
authors.lastname: Youssof
authors.affiliation: Speech, Language, Swallow Center, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, USA.
authors.forename: Carol
authors.initials: C
authors.lastname: Romero-Clark
authors.affiliation: Department of Family and Community Medicine, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, USA.
authors.forename: Teddy
authors.initials: T
authors.lastname: Warner
authors.affiliation: Speech, Language and Hearing Sciences, Center for Respiratory Research & Rehabilitation, University of Florida, Gainesville, Florida, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Plowman
mesh_terms: D000368:Aged; D003430:Cross-Sectional Studies; D003680:Deglutition Disorders / Q000209:etiology* / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D039141:Muscular Dystrophy, Oculopharyngeal / Q000150:complications*; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D012189:Retrospective Studies; D012720:Severity of Illness Index; D014481:United States
keywords: deglutition; disease-specific quality of life; muscular dystrophy; reliability; swallowing; validity