Skip to main content
Mijn bibliotheek
Shop
Nieuws Boeken Tijdschriften E-learning Web-tv Video Audio
Tips voor Mijn BSL
UITGEBREID ZOEKEN
Inloggen
Top
Quality of Life Research
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

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

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
Literatuur
1.
Goldfinger, J. Z., Preiss, L. R., Devereux, R. B., Roman, M. J., Hendershot, T. P., Kroner, B. L., & Eagle, K. A. (2017). Marfan syndrome and quality of life in the GenTAC registry. Journal of the American college of Cardiology, 69(23), 2821–2830.PubMedPubMedCentralCrossRef
2.
Nelson, A. M., Walega, D. R., & McCarthy, R. J. (2015). The incidence and severity of physical pain symptoms in Marfan syndrome. A survey of 993 patients. Clinical Journal of Pain, 31, 1080–1086.PubMedCrossRef
3.
4.
Behr, C. A., Denning, N., Kallis, M. P., Maloney, C., Soffer, S. Z., Romano-Adesman, A., & Hong, A. R. (2019). The incidence of Marfan syndrome and cardiac anomalies in patients presenting with pectus deformities. Journal of Pediatric Surgery, 54, 1926–1928.PubMedCrossRef
5.
Fusar-Poli, P., Klersy, C., Stramesi, F., Callegari, A., Arbustini, E., & Politi, P. (2008). Determinants of quality of life in Marfan syndrome. Psychosomatics, 49, 243–248.PubMedCrossRef
6.
Aubart, M., Gross, M., Hanna, N., Zabot, M., Sznajder, M., Detaint, D., Gouya, L., Jondeau, G., Boileau, C., & Stheneur, C. (2015). The clinical presentation of Marfan syndrome is modulated by expression of wild-type FBN1 allele. Human Molecular Genetics, 24(10), 2764–2770.PubMedCrossRef
7.
Du, Q., Zhang, D., Zhuang, Y., Xia, O., Wen, T., & Jia, H. (2021). The molecular genetics of Marfan syndrome. International Journal of Medical Sciences, 18(13), 2752–2766.PubMedPubMedCentralCrossRef
8.
Growth, K. A., Hove, H., Kyhl, K., Folkestad, L., Gaustadnes, M., Vejlstrup, N., Stochholm, K., Ostergaard, J. R., Andersen, N. H., & Gravholt, C. H. (2015). Prevalence, incidence, and age at diagnosis in Marfan syndrome. Orphanet Journal of Rare Diseases, 10(153), 1–10.
9.
Otremski, H., Widmann, R. F., Di Maio, M. F., & Ovadia, D. (2020). The correlation between spinal and chest wall deformities and pulmonary function in Marfan syndrome. Journal of Children’s Orthopaedics, 14, 343–348.PubMedPubMedCentralCrossRef
10.
Peters, K. F., Apse, K. A., Blackford, A., McHugh, B., Michalic, D., & Biesecker, B. B. (2005). Social and behavioral research in clinical genetics. Living with Marfan syndrome: Coping with stigma. Clinical Genetics, 68, 6–14.PubMedCrossRef
11.
Ratiu, I., Virden, T. B., Baylow, H., Flint, M., & Esfandiarei, M. (2018). Executive function and quality of life in individuals with Marfan syndrome. Quality of Life Research, 27, 2057–2065.PubMedCrossRef
12.
Vanem, T. T., Rand-Hendriksen, S., Brunborg, C., Geiran, O. R., & Roe, C. (2020). Health-related quality of life in Marfan syndrome: A 10-year follow-up. Health and Quality of Life Outcomes, 18(376), 1–8.
13.
Castori, M., Morlino, S., Pascolini, G., Blundo, C., & Grammatico, P. (2015). Gastrointestinal and nutritional issues in joint hypermobility syndrome/Ehlers–Danlos syndrome, hypermobility Type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 169, 54–75.CrossRef
14.
Fankhauser, G. T., Stone, W. M., Fowl, R. J., Oonnell, M. E., Bower, T. C., Meyer, F. B., & Money, S. R. (2015). Surgical and medical management of extracranial carotid artery aneurysms. Journal of Vascular Surgery, 61, 389–393.PubMedCrossRef
15.
Hoganson, N. E., Cernaianu, A. C., Cilley, J. H., & DelRossi, A. J. (1990). Aneurysm of the left sinus of Valsalva. An unusual presentation. Texas Heart Institute Journal, 17, 245–248.PubMedPubMedCentral
16.
17.
Dranseika, V., Erdil, T., Schweiger, M., Balmer, C., Pretre, R., & Dave, H. (2020). Dysphagia and an aberrant subclavian artery: More than just a coincidence. Interactive CardioVascular and Thoracic Surgery, 31, 228–231.PubMedCrossRef
18.
Colton, R. H., Casper, J. K., & Leonard, R. (2011). Understanding voice problems. A physiological perspective for diagnosis and treatment (4th ed.). Lippincott Williams & Wilkins.
19.
Teixido, M. T., & Leonett, J. P. (1990). Recurrent laryngeal nerve paralysis associated with thoracic aortic aneurysm. Otolaryngology - Head and Neck Surgery, 102(2), 140–144.PubMedCrossRef
20.
Yuan, S. M. (2014). Cardiovascular dysphagia—Anatomical and clinical implications. Folia Morphologica, 73(2), 113–121.PubMedCrossRef
21.
Clark, H. M. (2003). Neuromuscular treatments for speech and swallowing: A tutorial. American Journal of Speech - Language Pathology, 12(4), 400.PubMedCrossRef
22.
Werner, C., Rbah, R., & Böhm, M. (2006). Cardiovascular dysphagia. Clinical Research in Cardiology, 95, 54–56.PubMedCrossRef
23.
Iacovou, E., Vlastarakos, P. V., & Nikolopoulos, T. P. (2014). Laryngeal involvement in connective tissue disorders. Is it important for patient management? Indian Journal of Otolaryngology Head & Neck Surgery, 66, S22–S29.CrossRef
24.
Verdonschot, R., & Baijens, L. W. J. (2013). Symptoms of anxiety and depression assessed with the Hospital Anxiety and Depression Scale in patients with oropharyngeal dysphagia. Journal of Psychosomatic Research, 75(5), 451–455.PubMedCrossRef
25.
Verdonschot, R. J. C. G., Baijens, L., Vanbelle, S., Florie, M., Kremer, B., & Leue, C. (2015). The relationship between fiberoptic endoscopic evaluation of swallowing outcome and symptoms of anxiety and depression in dysphagic patients. The Laryngoscope, 126, E199–E207.PubMedCrossRef
26.
Loosen, S. H., Kandler, J., Luedde, T., Kostev, K., & Roderburg, C. (2021). Achalasia is associated with a higher incidence of depression in outpatients in Germany. PLoS ONE, 16(4), e0250503.PubMedPubMedCentralCrossRef
27.
Barbe, A. G. (2018). Medication-induced xerostomia and hyposalivation in the elderly: Culprits, complications, and management. Drugs & Aging, 35, 877–885.CrossRef
28.
Nolan, N. M. (2001). Medication-induced taste disturbances. Nutrition in Clinical Care, 4(1), 43–52.CrossRef
29.
Bowen, J. M., & Connolly, H. M. (2014). Of Marfan’s Syndrome, mice, and medications—Editorial. The New England Journal of Medicine, 371(22), 2127–2128.PubMedCrossRef
30.
Jobski, K., Hofmann, F., Herget-Rosenthal, S., & Dörks, M. (2020). Drug interactions with oral anticoagulants in German nursing home residents: Comparison between vitamin K antagonists and non-vitamin K antagonist oral anticoagulants based on two nested case–control studies. Clinical Research in Cardiology, 109, 465–475.PubMedCrossRef
31.
Osawa, H., Kita, H., Ohnishi, H., Mutoh, H., Ishino, Y., Satoh, K., & Sugano, K. (2005). Histamine-2 receptor expression in gastric mucosa before and after Helicobacter pylori cure. Alimentary Pharmacology & Therapeutics, 21(2), 92–98.CrossRef
32.
Wallace, J. L., & Del Soldato, P. (2003). The therapeutic potential of NO-NSAIDs. A review article. Fundamental & Clinical Pharmacology, 17, 11–20.CrossRef
33.
Jaspersen, D. (2000). Drug-induced oesophageal disorders pathogenesis, incidence, prevention and management. Drug Safety, 22(3), 237–249.PubMedCrossRef
34.
O’Neill, J. L., & Remington, T. L. (2003). Drug-induced esophageal injuries and dysphagia. The Annals of Pharmacotherapy, 37, 1675–1684.PubMedCrossRef
35.
Boyce, H. W. (1998). Drug-induced esophageal damage: Diseases of medical progress. Gastrointestinal Endoscopy, 47(6), 547–550.PubMedCrossRef
36.
Ferrans, C. E., & Powers, M. J. (1985). Quality of Life Index: Development and psychometric properties. Advanced Nursing Science, 8, 15–24.CrossRef
37.
McHorney, C. A., Robbins, J., Lomax, K., Rosenbek, J. C., Chignell, K., Kramer, A. E., & Bricker, D. E. (2002). The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity. Dysphagia, 17(2), 97–114.PubMedCrossRef
38.
Eslick, G. D., & Talley, N. J. (2008). Dysphagia. Epidemiology, risk factors and impact on quality of life—A population-based study. Alimentary Pharmacology & Therapeutics, 27, 971–979.CrossRef
39.
Plowman-Prine, E. K., Sapienza, C. M., Okun, M. S., Pollock, S. L., Jacobson, C., Wu, S. S., & Rosenbek, J. C. (2009). The relationship between quality of life and swallowing in Parkinson’s disease. Movement Disorders, 24(9), 1352–1358.PubMedPubMedCentralCrossRef
40.
Walker, R. W., Dunn, J. R., & Gray, W. K. (2011). Self-reported dysphagia and its correlates within a prevalent population of people with Parkinson’s disease. Dysphagia, 26, 92–96.PubMedCrossRef
41.
Brodsky, M. B., McNeil, M. R., Martin-Harris, B., Palmer, C. V., Grayhack, J. P., & Verdolini Abbott, K. (2012). Effects of divided attention on swallowing in healthy participants. Dysphagia, 27, 307–317.PubMedCrossRef
42.
Brodsky, M. B., Verdolini Abbott, K., McNeil, M. R., Palmer, C. V., Grayhack, J. P., & Martin-Harris, B. (2012). Effects of divided attention on swallowing in persons with idiopathic Parkinson’s disease. Dysphagia, 27, 390–400.PubMedCrossRef
43.
Lee, V. C., Rhew, D. C., Dylan, M., Badamgarav, E., Braunstein, G. D., et al. (2004). Meta-analysis: Angiotensin-receptor blockers in chronic heart failure and high-risk acute myocardial infarction. Annals of Internal Medicine, 141(9), 693–704.PubMedCrossRef
44.
Umemura, S., Arima, H., Arima, S., Asayama, K., Dohi, Y., Hirooka, Y., Horio, T., et al. (2019). The Japanese Society of hypertension guidelines for the management of hypertension. Hypertension Research, 42, 1235–1481.PubMedCrossRef
45.
Miarons, M., Tomsen, N., Nascimento, W., Espín, A., López-Faixó, D., Clavé, P., & Rofes, L. (2018). Increased levels of substance P in patients taking beta-blockers are linked with a protective effect on oropharyngeal dysphagia. Neurogastroenterology & Motility, 30(e13397), 1–10. https://​doi.​org/​10.​1111/​nmo.​13397CrossRef
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

Andere artikelen Uitgave 12/2022

Quality of Life Research 12/2022 Naar de uitgave

OriginalPaper

Health-related quality of life in long-term Caribbean prostate cancer survivors: comparisons with prostate cancer-free men

OriginalPaper

Accuracy of mixture item response theory models for identifying sample heterogeneity in patient-reported outcomes: a simulation study

OriginalPaper

Oral health-related quality of life in children with celiac disease

OriginalPaper

Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms

Review

Measurement properties and interpretability of the PROMIS item banks in stroke patients: a systematic review

Publisher Correction

Publisher Correction to: Response to the discussion of the assessment of functioning