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Gepubliceerd in: Quality of Life Research 12/2022

22-07-2022

Swallowing and quality of life in individuals with Marfan syndrome: a cross-sectional study

Auteurs: Hope E. Baylow, Mitra Esfandiarei, Ileana Ratiu

Gepubliceerd in: Quality of Life Research | Uitgave 12/2022

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Abstract

Purpose

Marfan syndrome (MFS) is a connective tissue disorder that affects skeletal, ocular, pulmonary, cardiovascular, and central nervous systems. Symptoms may lead to diminished quality of life (QoL) in individuals with MFS compared with healthy individuals. Currently, there is little evidence regarding the impact of MFS on swallowing and QoL. This study examined perceptions of swallowing difficulties and QoL among persons with MFS.

Method

A total of 356 participants (1% response rate) with a self-reported diagnosis of MFS provided medication regime and completed a Quality-of-Life Index and a modified version of the SWAL-QOL used to assess 8 QOL concepts related to swallowing: burden, duration, desire, food choice, fear, mental health, social concerns, and fatigue.

Results

Dysphagia symptoms were reported by 62% (N = 356) of the participants. Analyses assessing correlations between responses to SWAL-QOL questions, QoL scores, and reported medications were conducted. Further, responses on the SWAL-QOL predicted QoL satisfaction, even after controlling for medications. Findings revealed that greater swallowing difficulty affects QoL satisfaction and overall QoL, but not QoL importance. Further, specific medications were associated with differences in swallowing difficulty as well as QoL satisfaction.

Conclusions

The findings of the current study suggest that individuals with MFS may experience specific swallowing difficulties which impact QoL. Specific classes of drugs may also be associated with reported swallowing QoL and QoL satisfaction in MFS. These findings have implications for clinicians who work with individuals with MFS.
vorige artikel How important is subjective well-being for patients? A qualitative interview study of people with psoriasis
volgende artikel The impact of care–recipient relationship type on health-related quality of life in community-dwelling older adults with dementia and their informal caregivers
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Metagegevens
Titel
Swallowing and quality of life in individuals with Marfan syndrome: a cross-sectional study
Auteurs
Hope E. Baylow
Mitra Esfandiarei
Ileana Ratiu
Publicatiedatum
22-07-2022
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 12/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-022-03192-1

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