Non-invasive ventilation and gastrostomy may not impact overall quality of life in patients with ALS

Amyotrophic Lateral Sclerosis

Volumn 13, Issue 1, 2012, Pages 55-58

  Zamietra, Kristen ^a   Lehman, Erik B ^a   Felgoise, Stephanie H ^b   Walsh, Susan M ^c   Stephens, Helen E ^a   Simmons, Zachary ^a  

^a PENN STATE COLLEGE OF MEDICINE   (United States)

^b PHILADELPHIA COLLEGE OF OSTEOPATHIC MEDICINE   (United States)

^c ALS Association Greater Philadelphia Chapter   (United States)

Author keywords

Amyotrophic lateral sclerosis; Gastrostomy; Non invasive ventilation; Quality of life

Indexed keywords

ADULT; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; CLINICAL ARTICLE; CONTROLLED STUDY; FEMALE; GASTROSTOMY; HUMAN; MALE; MEDICAL RECORD REVIEW; NONINVASIVE VENTILATION; POSITIVE END EXPIRATORY PRESSURE; PRIORITY JOURNAL; QUALITY OF LIFE; QUALITY OF LIFE INDEX; RETROSPECTIVE STUDY;

ADULT; AGED; AGED, 80 AND OVER; AMYOTROPHIC LATERAL SCLEROSIS; GASTROSTOMY; HUMANS; MALE; MIDDLE AGED; POSITIVE-PRESSURE RESPIRATION; QUALITY OF LIFE; RETROSPECTIVE STUDIES;

EID: 84855366043     PISSN: 17482968     EISSN: 1471180X     Source Type: Journal    
DOI: 10.3109/17482968.2011.641570     Document Type: Article

References (25)

1. Bensimon G, Lacomblez L, Meininger V, ALS/Riluzole Study Group. A controlled trial of riluzole in amyotrophic lateral sclerosis. N Engl J Med. 1994;330:585-91. (Pubitemid 24065791)
2. Lacomblez L, Bensimon G, Leigh PN, Guillet P, Meininger V, ALS/Riluzole Study Group II. Dose-ranging study of riluzole in amyotrophic lateral sclerosis. Lancet. 1996;347:1425-31. (Pubitemid 26161204)
3. Mazzini L, Corra T, Zaccala M, Mora G, del Piano M, Galante M. Percutaneous endoscopic gastrostomy and enteral nutrition in amyotrophic lateral sclerosis. J Neurol. 1995;242:695-8.
4. Del Piano M, Occhipinti P, Orsello M, Ballare M. Percutaneous endoscopic gastrostomy (PEG) reduces complications and improves survival in amyotrophic lateral sclerosis (ALS). Gastointest Endosc 1999;49:AB192.
5. Bourke SC, Tomlinson M, Williams TL, Bullock RE, Shaw PJ, Gibson GJ. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomized controlled trial. Lancet Neurol 2006;5:140-147. (Pubitemid 43109171)
6. Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis. Drug, nutritional, and respiratory therapies (an evidence based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1218-26.
7. Lyall RA, Donaldson N, Fleming T, Wood C, Newsom-Davis I, Polkey MI, et al. A prospective study of quality of life in ALS patients treated with non-invasive ventilation. Neurology. 2001;57:153-6. (Pubitemid 32634871)
8. Jackson CE, Rosenfeld J, Moore DH, Bryan WW, Barohn RJ, Wrench M, et al. A preliminary evaluation of a prospective study of pulmonary function studies and symptoms of hypoventilation in ALS/MND patients. J Neurol Sci. 2001;191:75-8. (Pubitemid 33035898)
9. Bourke SC, Bullock RE, Williams TL, Shaw PJ, Gibson GJ. Non-invasive ventilation in ALS: indications and effect on quality of life. Neurology. 2003;61:171-7. (Pubitemid 36875296)
10. Butz M, Wollinsky KH, Wiedemuth-Catrinescu U, Sperfeld A, Winter S, Mehrkens HH, et al. Longitudinal effects of non-invasive positive-pressure ventilation in patients with amyotrophic lateral sclerosis. Am J Phys Med Rehabil. 2003;82:597-604. (Pubitemid 36896156)
11. Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272:619-26. (Pubitemid 24255222)
12. World Health Organization. The World Health Organization Quality of Life Assessment. Field Trial Version for Adults. Administration Manual. Geneva: World Health Organization; 1995.
13. World Health Organization. WHOQoL: measuring quality of life. Geneva: World Health Organization; 1997.
14. Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ALSSQoL: balancing physical and non-physical factors in assessing quality of life in ALS. Neurology. 2006;67:1659-64. (Pubitemid 44747940)
15. Felgoise S, Rodriguez J, Stephens H, Walsh S, Bremer B, Simmons Z. Validation of a shorter ALS-specific quality of life instrument: the ALSSQoL-R. Amyotroph Lateral Scler 2008;9(Suppl 1):12-3.
16. Brooks BR, Miller RG, Swash M, Munsat TL, for the World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyo-troph Lateral Scler Other Motor Neuron Disord. 2000; 1:293-9.
17. Cedarbaum J, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13-21. (Pubitemid 29502501)
18. Singer JD, Willett JB. Applied Longitudinal Data Analysis: Modeling Change and Event Occurrence. New York: Oxford University Press; 2003.
19. Robbins, RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology. 2001;56:442-4. (Pubitemid 32172865)
20. van der Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, van der Fraaff, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65:1264-7. (Pubitemid 41508221)
21. Wilson IB. Clinical understanding and clinical implications of response shift. Soc Sci Med. 1999;48:1577-88. (Pubitemid 29254115)
22. Carr AJ, Gibson B, Robinson PG. Measuring quality of life: is quality of life determined by expectations or experience? Br Med J. 2001;322:1240-3. (Pubitemid 32453083)
23. Bromberg MB, Forshew DA. Comparison of instruments addressing quality of life in patients with ALS and their car-egivers. Neurology. 2002;58:320-2. (Pubitemid 34084232)
24. Neudert C, Wasner M, Borasio GD. Individual quality of life is not correlated with health related quality of life or physical function in patients with amyotrophic lateral sclerosis. J Palliat Med. 2004;7:551-7. (Pubitemid 39237570)
25. de Groot IJM, Post MWM, van Heuveln T, van den Berg LH, Lindeman E. Cross-sectional and longitudinal correlations between disease progression and different health-related quality of life domains in persons with amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2007;8:356-61. (Pubitemid 350176934)