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Defining Swallowing-Related Quality of Life Profiles in Individuals with Amyotrophic Lateral Sclerosis

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Abstract

Although it is known that dysphagia contributes to significant malnutrition, pneumonia, and mortality in amyotrophic lateral sclerosis (ALS), it remains unclear how swallowing impairment impacts quality of life in this vulnerable patient population. The aim of the current study was to (1) delineate swallow-related quality of life (SR-QOL) profiles in individuals with ALS and (2) evaluate relationships between SR-QOL, degree of swallowing impairment, and ALS global disease progression. Eighty-one ALS patients underwent a standardized videofluoroscopic swallow study and completed the swallowing quality of life (SWAL-QOL) instrument and ALS functional rating scale-revised (ALSFRS-R). Penetration Aspiration Scale (PAS) scores were derived by a blinded rater. Correlation analyses and a between groups ANOVA (safe vs. penetrators vs. aspirators) were performed. Mean SWAL-QOL score for this cohort was 75.94 indicating a moderate degree of SR-QOL impairment with fatigue, eating duration, and communication representing the most affected domains. Correlations were revealed between the SWAL-QOL and (1) PAS (r = −0.39, p < 0.001) and (2) ALSFRS-R (r = 0.23, p < 0.05). Mean (SD) SWAL-QOL scores for safe versus penetrator versus aspirator groups were 81.2 (2.3) versus 77 (3.4) versus 58.7 (5.9), respectively, with a main effect observed [F(2,78) = 9.71, p < 0.001]. Post hoc testing revealed lower SWAL-QOL scores for aspirators versus safe swallowers (p < 0.001) and aspirators versus penetrators (p < 0.001). Overall, SR-QOL was moderately reduced in this cohort of ALS patients and profoundly impacted in ALS aspirators and individuals with advanced disease. These findings highlight the importance of early multidisciplinary intervention to not only avoid malnutrition, weight loss, and pulmonary sequelae but also the associated reduced QOL seen in these individuals.

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References

  1. Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1(5):293–9.

    Article  CAS  PubMed  Google Scholar 

  2. Carpenter RJ 3rd, McDonald TJ, Howard FM Jr. The otolaryngologic presentation of amyotrophic lateral sclerosis. Otolaryngology. 1978;86(3 Pt 1):ORL479–84.

    PubMed  Google Scholar 

  3. Chen A, Garrett CG. Original articles: otolaryngologic presentations of amyotrophic lateral sclerosis. Otolaryngol Head Neck Surg. 2005;132:500–4. doi:10.1016/j.otohns.2004.09.092.

    Article  PubMed  Google Scholar 

  4. Kühnlein P, Gdynia H-J, Sperfeld A-D, Lindner-Pfleghar B, Ludolph AC, Prosiegel M, Riecker A. Diagnosis and treatment of bulbar symptoms in amyotrophic lateral sclerosis. Nat Clin Pract Neurol. 2008;4(7):366–75. doi:10.1038/ncpneuro0853.

    Article  PubMed  Google Scholar 

  5. Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, Kalra S, Katz JS, Mitsumoto H, Rosenfeld J, Shoesmith C, Strong MJ, Woolley SC. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73(15):1227–33. doi:10.1212/WNL.0b013e3181bc01a4.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  6. Van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, Van der Graaff MM, Wokke JH, Van den Berg LH. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65(8):1264–7. doi:10.1212/01.wnl.0000180717.29273.12.

    Article  PubMed  Google Scholar 

  7. Goyal N, Mozaffar T. Respiratory and nutritional support in amyotrophic lateral sclerosis. Curr Treat Options Neurol. 2014;16(2):1.

    Article  Google Scholar 

  8. Plowman EK (2014) Nutrition and Feeding Tube Placement for People with ALS: Best Practice in Clinical Decision Making. Dysphagia Cafe.

  9. Solazzo A, Vecchio L, Reginelli A, Monaco L, Sagnelli A, Monsorrò M, Martino N, Tedeschi G, Grassi R. Search for compensation postures with videofluoromanometric investigation in dysphagic patients affected by amyotrophic lateral sclerosis [Ricerca delle posture di compenso della disfagia con videofluoromanometria nella sclerosi laterale amiotrofica]. Radiol Med. 2011;116(7):1083.

    Article  CAS  PubMed  Google Scholar 

  10. Greenwood DI. Nutrition management of amyotrophic lateral sclerosis. Nutr Clin Pract. 2013;28(3):392–9. doi:10.1177/0884533613476554.

    Article  PubMed  Google Scholar 

  11. Plowman EK (2015) Pecutaneous gastronomy tube placemet increases survival in amyotrophic lateral sclerosis. Dysphagia Research Society.

  12. Braun MM, Osecheck M, Joyce NC. Nutrition assessment and management in amyotrophic lateral sclerosis. Phys Med Rehabil Clin N Am. 2012;23:751–71. doi:10.1016/j.pmr.2012.08.006.

    Article  PubMed  Google Scholar 

  13. Yorkston KM, Miller RM, Strand EA. Management of speech and swallowing in degenerative diseases. Tucson: Communication Skill Builders; 1995.

    Google Scholar 

  14. Miller RM, Britton D. Dysphagia in neuromuscular diseases. Clinical dysphagia series. San Diego: Plural Publishing Inc; 2011.

    Google Scholar 

  15. Logemann JA. Evaluation and treatment of swallowing disorders, vol. 2. Austin: Pro-Ed; 1998.

    Google Scholar 

  16. Groher M, Crary M. Dysphagia: clinical management in adults and children, vol. 1. Maryland Heights: Mosby Elsevier; 2010.

    Google Scholar 

  17. Plowman-Prine EK, Sapienza CM, Okun MS, Pollock SL, Jacobson C, Wu SS, Rosenbek JC. The relationship between quality of life and swallowing in Parkinson’s disease. Mov Disord. 2009;24(9):1352–8. doi:10.1002/mds.22617.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Klugman TM, Ross E. Perceptions of the impact of speech, language, swallowing, and hearing difficulties on quality of life of a group of South African persons with multiple sclerosis. Folia Phoniatrica et Logopaedica. 2002;54(4):201.

    Article  PubMed  Google Scholar 

  19. Lin BM, Starmer HM, Gourin CG. The relationship between depressive symptoms, quality of life, and swallowing function in head and neck cancer patients 1 year after definitive therapy. Laryngoscope. 2012;122(7):1518–25. doi:10.1002/lary.23312.

    Article  PubMed  Google Scholar 

  20. Lee L-Y, Chen S-C, Chen W-C, Huang B-S, Lin C-Y. Oral medicine: postradiation trismus and its impact on quality of life in patients with head and neck cancer. Oral Surg Oral Med Oral Pathol Oral Radiol. 2015;119:187–95. doi:10.1016/j.oooo.2014.10.003.

    Article  PubMed  Google Scholar 

  21. Paris G, Martinaud O, Petit A, Cuvelier A, Hannequin D, Roppeneck P, Verin E. Oropharyngeal dysphagia in amyotrophic lateral sclerosis alters quality of life. J Oral Rehabil. 2013;40(3):199.

    Article  CAS  PubMed  Google Scholar 

  22. Rovner BW, Folstein MF. Mini-mental state exam in clinical practice. Hosp Pract. 1987; 22(1):99, 103, 106 passim.

  23. McHorney CA, Bricker DE, Kramer AE, Rosenbek JC, Robbins J, Chignell KA, Logemann JA, Clarke C. The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia. 2000;15(3):115–21.

    Article  CAS  PubMed  Google Scholar 

  24. McHorney CA, Robbins J, Lomax K, Rosenbek JC, Chignell K, Kramer AE, Bricker DE. The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity. Dysphagia. 2002;17(2):97–114. doi:10.1007/s00455-001-0109-1.

    Article  PubMed  Google Scholar 

  25. McHorney CA, Martin-Harris B, Robbins J, Rosenbek J. Clinical validity of the SWAL-QOL and SWAL-CARE outcome tools with respect to bolus flow measures. Dysphagia. 2006;21(3):141–8. doi:10.1007/s00455-005-0026-9.

    Article  PubMed  Google Scholar 

  26. Vanderwegen J, Nuffelen G, Bodt M. The validation and psychometric properties of the Dutch version of the Swallowing Quality-of-Life Questionnaire (DSWAL-QOL). Dysphagia. 2013;28(1):11.

    Article  PubMed  Google Scholar 

  27. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13–21. doi:10.1016/S0022-510X(99)00210-5.

    Article  CAS  PubMed  Google Scholar 

  28. Rosenbek JC, Robbins JA, Roecker EB, Coyle JL, Wood JL. A penetration-aspiration scale. Dysphagia. 1996;11(2):93–8.

    Article  CAS  PubMed  Google Scholar 

  29. Talbot K. Amyotrophic lateral sclerosis: cell vulnerability or system vulnerability? J Anat. 2014;224(1):45–51. doi:10.1111/joa.12107.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. Desport JC, Preux PM, Truong CT, Courat L, Vallat JM, Couratier P. Nutritional assessment and survival in ALS patients. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1(2):91–6.

    Article  CAS  PubMed  Google Scholar 

  31. Körner S, Hendricks M, Kollewe K, Zapf A, Dengler R, Silani V, Petri S. Weight loss, dysphagia and supplement intake in patients with amyotrophic lateral sclerosis (ALS): impact on quality of life and therapeutic options. BMC Neurol. 2013;13(1):1–9. doi:10.1186/1471-2377-13-84.

    Article  Google Scholar 

  32. Ngo ST, Steyn FJ, McCombe PA. Review article: body mass index and dietary intervention: implications for prognosis of amyotrophic lateral sclerosis. J Neurol Sci. 2014;340:5–12. doi:10.1016/j.jns.2014.02.035.

    Article  CAS  PubMed  Google Scholar 

  33. da Costa Franceschini A, Mourao LF. Dysarthria and dysphagia in amyotrophic lateral sclerosis with spinal onset: a study of quality of life related to swallowing. NeuroRehabilitation. 2015;36(1):127–34. doi:10.3233/nre-141200.

    Google Scholar 

  34. Nguyen NP, Frank C, Moltz CC, Vos P, Smith HJ, Karlsson U, Dutta S, Midyett A, Barloon J, Sallah S. Impact of dysphagia on quality of life after treatment of head-and-neck cancer. Int J Radiat Oncol Biol Phys. 2005;61(3):772–8. doi:10.1016/j.ijrobp.2004.06.017.

    Article  PubMed  Google Scholar 

  35. Ekberg O, Hamdy S, Woisard V, Wuttge-Hannig A, Ortega P. Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia. 2002;17(2):139–46.

    Article  PubMed  Google Scholar 

  36. McDonald ER, Wiedenfeld SA, Hillel A, Carpenter CL, Walter RA. Survival in amyotrophic lateral sclerosis: the role of psychological factors. Arch Neurol. 1994;51(1):17–23. doi:10.1001/archneur.1994.00540130027010.

    Article  CAS  PubMed  Google Scholar 

  37. Chio A, Logroscino G, Hardiman O, Swingler R, Mitchell D, Beghi E, Traynor BG, Eurals C. Prognostic factors in ALS: a critical review. Amyotroph Lateral Scler. 2009;10(5–6):310–23. doi:10.3109/17482960802566824.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Langmore SE, Terpenning MS, Schork A, Chen Y, Murray JT, Lopatin D, Loesche WJ. Predictors of aspiration pneumonia: how important is dysphagia? Dysphagia. 1998;13(2):69–81. doi:10.1007/pl00009559.

    Article  CAS  PubMed  Google Scholar 

  39. Leow L, Huckabee M-L, Anderson T, Beckert L. The impact of dysphagia on quality of life in ageing and Parkinson’s disease as measured by the swallowing quality of life (SWAL-QOL) questionnaire. Dysphagia. 2010;25(3):216–20. doi:10.1007/s00455-009-9245-9.

    Article  PubMed  Google Scholar 

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Acknowledgments

The authors thank all of the participants who offered their time toward this publication. This study was funded, in part, by Grant R21HD075327 from the National Institute of Child Health and Development and a National Center for Medical Rehabilitation Research T32 Neuromuscular Plasticity Training Program.

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Authors and Affiliations

  1. Department of Speech, Language and Hearing Sciences, College of Public Health and Health Professions, University of Florida, 1225 Center Drive, P.O. Box 100185, Gainesville, FL, 32611, USA

    Lauren Tabor, Raele Robison & Emily K. Plowman

  2. Neuromotor Speech and Swallowing Restoration Laboratory, University of Florida, Gainesville, USA

    Lauren Tabor, Raele Robison & Emily K. Plowman

  3. Joy McCann Center for Voice and Swallowing Disorders, University of South Florida, Tampa, USA

    Joy Gaziano & Stephanie Watts

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  1. Lauren Tabor
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Correspondence to Lauren Tabor.

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Tabor, L., Gaziano, J., Watts, S. et al. Defining Swallowing-Related Quality of Life Profiles in Individuals with Amyotrophic Lateral Sclerosis. Dysphagia 31, 376–382 (2016). https://doi.org/10.1007/s00455-015-9686-2

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