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Muscle Nerve. 2017 Jul;56(1):28-35. doi: 10.1002/mus.25441. Epub 2017 Feb 12.

Dysphagia-related quality of life in oculopharyngeal muscular dystrophy: Psychometric properties of the SWAL-QOL instrument.

Author information

1
Department of Neurology, MSC 10 5620, 1, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, 87131, USA.
2
Speech, Language, Swallow Center, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, USA.
3
Department of Family and Community Medicine, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, USA.
4
Speech, Language and Hearing Sciences, Center for Respiratory Research & Rehabilitation, University of Florida, Gainesville, Florida, USA.

Abstract

INTRODUCTION:

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.

KEYWORDS:

deglutition; disease-specific quality of life; muscular dystrophy; reliability; swallowing; validity

PMID:
27759888
PMCID:
PMC5397376
DOI:
10.1002/mus.25441
[Indexed for MEDLINE]
Free PMC Article

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