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

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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.

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Acknowledgements

The authors would like to thank The National Marfan Foundation (USA) and Genetic Aortic Disease Association (GADA Canada) for their assistance with patient recruitment for this study.

Funding

The author declares that Hope E Baylow receives a full-time salary from The University of Scranton. The author declares that Mitra Esfandiarei and Ileana Ratiu each receive a full-time salary from Midwestern University. The author declares there is no funding associated with this study.

Author information

Authors and Affiliations

  1. Department of Health and Human Performance, The University of Scranton, Edward Leahy Hall Rm. 824, 800 Linden St, Scranton, PA, 18510, USA

    Hope E. Baylow

  2. Department of Biomedical Sciences, Midwestern University, Glendale, AZ, USA

    Mitra Esfandiarei

  3. Department of Speech and Hearing Science, Arizona State University, Tempe, AZ, USA

    Ileana Ratiu

  4. Speech-Language Pathology Program, Midwestern University, Glendale, AZ, USA

    Ileana Ratiu

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  1. Hope E. Baylow
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  2. Mitra Esfandiarei
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Correspondence to Hope E. Baylow.

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The author declares that neither Hope E Baylow, Mitra Esfandiarei, nor Ileana Ratiu have a conflict of interest. The author declares that neither Hope E Baylow, Mitra Esfandiarei, nor Ileana Ratiu have no relevant non-financial interests to disclose.

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Baylow, H.E., Esfandiarei, M. & Ratiu, I. Swallowing and quality of life in individuals with Marfan syndrome: a cross-sectional study. Qual Life Res 31, 3365–3375 (2022). https://doi.org/10.1007/s11136-022-03192-1

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  • DOI: https://doi.org/10.1007/s11136-022-03192-1

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