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Dysphagia‐related quality of life in oculopharyngeal muscular dystrophy: Psychometric properties of the SWAL‐QOL instrument
Author(s) -
Youssof Sarah,
RomeroClark Carol,
Warner Teddy,
Plowman Emily
Publication year - 2017
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.25441
Subject(s) - oculopharyngeal muscular dystrophy , dysphagia , medicine , swallowing , quality of life (healthcare) , physical therapy , cronbach's alpha , pharyngeal muscles , reliability (semiconductor) , construct validity , psychometrics , physical medicine and rehabilitation , clinical psychology , surgery , power (physics) , physics , nursing , quantum mechanics
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. Methods We administered the SWAL‐QOL to U.S. OPMD Registry participants. We described SR‐QoL profiles and assessed reliability and validity. Results 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. Conclusions 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.