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Quality of Life Research

Erschienen in:

22.07.2022

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

verfasst von: Hope E. Baylow, Mitra Esfandiarei, Ileana Ratiu

Erschienen in: Quality of Life Research | Ausgabe 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.

Vorheriger Artikel How important is subjective well-being for patients? A qualitative interview study of people with psoriasis

Nächster 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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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

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

Rand-Hendriksen, S., Sørensen, I., Holmström, H., Andersson, S., & Finset, A. (2007). Fatigue, cognitive functioning and psychological distress in Marfan syndrome, a pilot study. Psychology, Health & Medicine, 12(3), 305–313. https://doi.org/10.1080/13548500600580824CrossRef

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

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

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

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

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.

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.

Khan, A., Humayun, M., Haider, I., & Ayub, M. (2016). Lujan–Fryns Syndrome (LFS): A unique combination of hypernasality, marfanoid body habitus, and neuropsychiatric issues, presenting as acute-onset dysphagia. Clinical Medicine Insights: Case Reports, 9, 115–118. https://doi.org/10.4137/CCRep.S41083CrossRefPubMedPubMedCentral

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

Titel: Swallowing and quality of life in individuals with Marfan syndrome: a cross-sectional study
verfasst von: Hope E. Baylow
Mitra Esfandiarei
Ileana Ratiu
Publikationsdatum: 22.07.2022
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 12/2022
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-022-03192-1

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Abstract

Purpose

Method

Results

Conclusions

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