Assessing quality of life in ALS

Journal of Clinical Neuromuscular Disease

Volumn 9, Issue 2, 2007, Pages 318-325

  Bromberg, Mark B ^a,b  

^a UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

^b NONE   (United States)

Author keywords

ALS; Amyotrophic lateral sclerosis; QoL; Quality of Life

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; CAREGIVER; CAREGIVER BURDEN; DEATH; FAMILY COUNSELING; HEALTH STATUS; HUMAN; PATIENT CARE; PATIENT EDUCATION; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; SUICIDE;

AMYOTROPHIC LATERAL SCLEROSIS; HUMANS; QUALITY OF LIFE; QUESTIONNAIRES; RESEARCH DESIGN;

EID: 37349004454     PISSN: 15220443     EISSN: 15371611     Source Type: Journal    
DOI: 10.1097/CND.0b013e31815af9b7     Document Type: Review

References (61)

1. Bergner M, Bobbitt R, Carter R, et al. The sickness impact profile: development and final revision of a health status measure. Med Care. 1981;19:787-805.
2. Ware J, Sherbourne C. The MOS 36-item short-form survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30:473-483.
3. Neudert C, Wasner M, Borasio GD. Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. J Neurol Sci. 2001;191:103-109.
4. McGuire D, Garrison L, Armon C, et al. A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile. J Neurol Sci. 1997;152:S18-S22.
5. Ware J, Kosinski M, Keller S. A 12-item short-form health survey. Med Care. 1996;34:220-233.
6. Jenkinson C, Hobart J, Chandola T, et al. Use of the short form health survey (SF-36) in patients with amyotrophic lateral sclerosis: tests of data quality, score reliability, response rate and scaling assumptions. J Neurol. 2002;249:178-183.
7. Andres P, Hedlund W, Finison L, et al. Quantitative motor assessment in amyotrophic lateral sclerosis. Neurology. 1986;36:937-941.
8. Cedarbaum JM, Stambler N. Performance of the amyotrophic lateral sclerosis functional rating scale (ALSFRS) in multicenter clinical trials. J Neurol Sci. 1997;152(Suppl 1):S1-S9.
9. Cedarbaum J, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13-21.
10. Shields RK, Ruhland JL, Ross MA, et al. Analysis of health-related quality of life and muscle impairment in individuals with amyotrophic lateral sclerosis using the medical outcome survey and the Tufts quantitative neuromuscular exam. Arch Phys Med Rehabil. 1998;79:855-862.
11. Jenkinson C, Fitzpatrick R, Brennan C, et al. Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: the ALSAQ-40. J Neurol. 1999;246(Suppl 3):III/16-III/21.
12. Maessen M, Post MW, Maille R, et al. Validity of the Dutch version of the amyotrophic lateral sclerosis assessment questionnaire, ALSAQ-40, ALSAQ-5. Amyotroph Lateral Scler. 2007;8:96-100.
13. Cohen S, Mount B, Strobel M, et al. The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9:207-219.
14. Simmons Z, Felgoise S, Bremer B, et al. The ALSSQOL: balancing physical and nonophysical factors in assessing quality of life in ALS. Neurology. 2006;67:1659-1664.
15. O'Boyle C, McGee H, Joyce C. Quality of life: assessing the individual. In: Albrecth G, Fitzpatrick R, eds. Quality of Life in Health Care. Advances in Medical Sociology. Greenwich, CT: JAI Press Inc; 1994:159-180.
16. Hickey A, Bury G, O'Boyle C, et al. A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ. 1996;313:29-33.
17. Clarke S, Hickey A, O'Boyle C, et al. Assessing individual quality of life in amyotrophic lateral sclerosis. Qual Life Res. 2001;10:149-158.
18. Ganzini L, Johnston WS, McFarland BH, et al. Attitudes of patients with amyotrophic lateral sclerosis and their care givers toward assisted suicide. N Engl J Med. 1998;339:967-973.
19. Ganzini L, Johnston WS, Silveira MJ. The final month of life in patients with ALS. Neurology. 2002;59:428-431.
20. Ganzini L, Johnston W, Hoffman W. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999;52:1434-1440.
21. Albert SM, Rabkin JG, Del Bene ML, et al. Wish to die in end-stage ALS. Neurology. 2005;65:68-74.
22. Veldink JH, Wokke JH, van der Wal G, et al. Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Engl J Med. 2002;346:1638-1644.
23. van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, et al. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med. 2007;356:1957-1965.
24. Rabkin J, Wagner G, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000;62:271-279.
25. Kiebert GM, Green C, Murphy C, et al. Patients' health-related quality of life and utilities associated with different stages of amyotrophic lateral sclerosis. J Neurol Sci. 2001;191:87-93.
26. Simmons Z, Bremer B, Robbins R, et al. Quality of life in ALS depends on factors other than strength and physical function. Neurology. 2000;55:388-392.
27. Bromberg M, Forshew D. Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology. 2002;58:320-322.
28. Goldstein LH, Atkins L, Leigh PN. Correlates of quality of life in people with motor neuron disease (MND). Amyotroph Lateral Scler Other Motor Neuron Disord. 2002;3:123-129.
29. Trail M, Nelson ND, Van JN, et al. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J Neurol Sci. 2003;209:79-85.
30. Chio A, Gauthier A, Montuschi A, et al. A cross sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatry. 2004;75:1597-1601.
31. Robbins R, Simmons Z, Bremer B, et al. Quality of life in ALS is maintained as physical function declines. Neurology. 2001;56:442-444.
32. Rabkin JG, Albert SM, Del Bene ML, et al. Prevalence of depressive disorders and change over time in latestage ALS. Neurology. 2005;65:62-67.
33. Nygren I, Askmark H. Self-reported quality of life in amyotrophic lateral sclerosis. J Palliat Med. 2006;9:304-308.
34. Gauthier A, Vignola A, Calvo A, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007;68:923-926.
35. Albert SM, Wasner M, Tider T, et al. Cross-cultural variation in mental health at end of life in patients with ALS. Neurology. 2007;68:1058-1061.
36. Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med. 1999;48:1507-1515.
37. Wilson I. Clinical understanding and clinical implications of response shift. Soc Sci Med. 1999;45:1577-1588.
38. Hecht M, Hillemacher T, Grasel E, et al. Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2002;3:225-231.
39. Walsh SM, Bremer BA, Felgoise SH, et al. Religiousness is related to quality of life in patients with ALS. Neurology. 2003;60:1527-1529.
40. Trail M, Nelson N, Van J, et al. Major stressors facing patients with amyotrophic lateral sclerosis (ALS): a survey to identify their concerns and to compare with those of their caregivers. Amyotroph Lateral Scler. 2004;5:40-45.
41. Lou JS, Reeves A, Benice T, et al. Fatigue and depression are associated with poor quality of life in ALS. Neurology. 2003;60:122-123.
42. Max M, Lynch S, Muir J, et al. Effects of desipramine, amitriptyline, and fluoxetine on pain in diabetic neuropathy. N Engl J Med. 1992;326:1250-1256.
43. Bourke SC, Shaw PJ, Gibson GJ. Respiratory function vs sleep-disordered breathing as predictors of QOL in ALS. Neurology. 2001;57:2040-2044.
44. Bourke SC, Bullock RE, Williams TL, et al. Noninvasive ventilation in ALS: indications and effect on quality of life. Neurology. 2003;61:171-177.
45. Van den Berg JP, Kalmijn S, Lindeman E, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65:1264-1267.
46. Miller R, Rosenberg J, Gelinas D, et al. Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence-based review). Neurology. 1999;52:1311-1323.
47. Piepers S, van den Berg JP, Kalmijn S, et al. Effect of non-invasive ventilation on survival, quality of life, respiratory function and cognition: a review of the literature. Amyotroph Lateral Scler. 2006;7:195-200.
48. Mustfa N, Walsh E, Bryant V, et al. The effect of noninvasive ventilation on ALS patients and their caregivers. Neurology. 2006;66:1211-1217.
49. Bromberg M, Forshew D, Iaderosa S, et al. Ventilator dependency in ALS; management, disease progression, and issues of coping. J Neurol Rehabil. 1996;10:195-216.
50. Gelinas DF, O'Connor P, Miller RG. Quality of life for ventilator-dependent ALS patients and their caregivers. J Neurol Sci. 1998;160(Suppl 1):S134-136.
51. Kaub-Wittemer D, Steinbuchel N, Wasner M, et al. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Symptom Manage. 2003;26:890-896.
52. Mazzini L, Corrà T, Zaccala M, et al. Percutaneous endoscopic gastrostomy and enteral nutrition in amyolateral sclerosis. J Neurol. 1995;242:695-698.
53. Neudert C, Oliver D, Wasner M, et al. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001;248:612-616.
54. Mandler R, Anderson F, Miller R, et al. The ALS patient care database: insights into end-of-life care in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2:203-208.
55. Krivickas LS, Shockley L, Mitsumoto H. Home care of patients with amyotrophic lateral sclerosis (ALS). J Neurol Sci. 1997;152(Suppl 1):S82-S89.
56. Lo Coco G, Lo Coco D, Cicero V, et al. Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. J Neurol Sci. 2005;238:11-17.
57. Chio A, Gauthier A, Calvo A, et al. Caregiver burden and patients' perception of being a burden in ALS. Neurology. 2005;64:1780-1782.
58. Carter GT, Bednar-Butler LM, Abresch RT, et al. Expanding the role of hospice care in amyotrophic lateral sclerosis. Am J Hosp Palliat Care. 1999;16:707-710.
59. Martin J, Turnbull J. Lasting impact in families after death from ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2:181-187.
60. Mitsumoto H, Bromberg M, Johnston W, et al. Promoting excellence in end-of-life care in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2005;6:145-154.
61. Hebert RS, Lacomis D, Easter C, et al. Grief support for informal caregivers of patients with ALS: a national survey. Neurology. 2005;64:137-138.