Quality of life in amyotrophic lateral sclerosis/motor neuron disease: A structured review

Amyotrophic Lateral Sclerosis

Volumn 10, Issue 1, 2009, Pages 15-26

  Epton, Joanna ^a   Harris, Robert ^a   Jenkinson, Crispin ^a  

^a UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

ALS; Health status measurement; MND; Patient reported outcome measures; Quality of life; Systematic review

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; AMYOTROPHIC LATERAL SCLEROSIS ASSESSMENT QUESTIONNAIRE 40; AMYOTROPHIC LATERAL SCLEROSIS FUNCTIONAL RATING SCALE; AMYOTROPHIC LATERAL SCLEROSIS SPECIFIC QUALITY OF LIFE QUESTIONNAIRE; CONCURRENT VALIDITY; CONSTRUCT VALIDITY; DIAGNOSIS, MEASUREMENT AND ANALYSIS; EURO QUALITY OF LIFE QUESTIONNAIRE EQ 5D; FACE VALIDITY; FUNCTIONAL LIMITATION PROFILE; HEALTH STATUS; HEALTH SURVEY; HUMAN; MCGILL QUALITY OF LIFE QUESTIONNAIRE; MOTOR NEURON DISEASE; PHYSICAL CAPACITY; PRIORITY JOURNAL; QUALITY OF LIFE; QUALITY OF LIFE INDEX; QUESTIONNAIRE; RATING SCALE; RELIGIOUS WELL BEING SCALE; REVIEW; SCHEDULE FOR THE EVALUATION OF INDIVIDUAL QUALITY OF LIFE QUESTIONNAIRE; SHORT FORM 36; SICKNESS IMPACT PROFILE; SOCIAL STATUS; SPIRITUAL WELL BEING SCALE; TEST RETEST RELIABILITY; LITERATURE; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; RANDOMIZATION; REPRODUCIBILITY;

AMYOTROPHIC LATERAL SCLEROSIS; HEALTH STATUS; HEALTH SURVEYS; HUMANS; MOTOR NEURON DISEASE; QUALITY OF LIFE; QUESTIONNAIRES; RANDOM ALLOCATION; REPRODUCIBILITY OF RESULTS; REVIEW LITERATURE AS TOPIC; SICKNESS IMPACT PROFILE;

EID: 61549096586     PISSN: 17482968     EISSN: 1471180X     Source Type: Journal    
DOI: 10.1080/17482960802163721     Document Type: Review

References (59)

1. Jenkinson C, Fitzpatrick R, Jenkinson D. Health status measurement in neurological disorders. Abingdon: Radcliffe Medical Press, 2000.
2. Fitzpatrick R, Davey C, Buxton M, Jones D. Evaluating patient based outcome measures for use in clinical trials. London: NHS Health Technology Assessment Programme, 1997.
3. McDowell I, Jenkinson C. Development standards for health measures. Journal of Health Services Research and Policy. 1996;1:238-46.
4. Ware J, Sherbourne C. The MOS 36-item Short-Form Health Survey. 1. conceptual framework and item selection. Medical Care. 1992;30:473-83.
5. Ware JE, Kosinski M, Keller S. SF-36 Physical and Mental Health Summary Scales: A User Manual. Boston, Massachusetts: The Health Institute, New England Medical Center, 1994.
6. Jenkinson C, Hobart J, Chandola T, Fitzpatrick R, Peto V, Swash M. 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. ALS-HPS Steering Group. Amyotrophic Lateral Sclerosis Health Profile Study. J Neurol. 2002;249:178-83.
7. Bourke SC, Shaw PJ, Gibson GJ. Respiratory function versus sleep-disordered breathing as predictors of QoL in ALS. Neurology. 2001;57:2040-4.
8. Norquist JM, Jenkinson C, Fitzpatrick R, Swash M. Factors which predict physical and mental health status in patients with amyotrophic lateral sclerosis over time. ALS-HPS Steering Group.
9. Bourke SC, McColl E, Shaw PJ, Gibson GJ. Validation of quality of life instruments in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:55-60.
10. van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, van der Graaff MM, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65:1264-7.
11. Jenkinson C, Fitzpatrick R, Swash M, Peto V. The ALS Health Profile Study: Quality of life of amyotrophic lateral sclerosis patients and carers in Europe. ALS-HPS Steering Group. J Neurol. 2000;247:835-40.
12. 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.
13. Neudert C, Wasner M, Borasio GD. Patients' assessment of quality of life instruments: A randomized study of SIP, SF-36 and SIEQoL-DW in patients with amyotrophic lateral sclerosis. J Neurol Sci. 2001;191:103-9.
14. Peto V, Jenkinson C, Fitzpatrick R, Swash M. Measuring mental health in amyotrophic lateral sclerosis (ALS): A comparison of the SF-36 Mental Health Index with the Psychological General Well-Being Index. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2:197-201.
15. Smith PS, Crossley B, Greenberg J, Wilder C, Carroll B. Agreement among three quality of life measures in patients with ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:269-75.
16. Bromberg MB, Anderson F, Davidson M, Miller RG. Assessing health status quality of life in ALS: Comparison of the SIP/ALS-19 with the ALS Functional Rating Scale and the Short Form-12 Health Survey. ALS C.A.R.E. Study Group. Clinical assessment, research, and education. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2: 31-7.
17. Jenkinson C, Stewart-Brown S, Petersen S, Paice C. Evaluation of the SF-36 Version II in the United Kingdom. Journal of Epidemiology and Community Health. 1999;53:46-50.
18. Bergner M, Bobbitt RA, Carter WB, Gilson BS. The Sickness Impact Profile: Development and final revision of health status measure Med Care. 1981;19:787-805.
19. Patrick D, Sittampalam Y, Somerville S, Carter W, Bergner M. A cross-cultural comparison of health status values. American Journal of Public Health. 1985;71:1402-7.
20. Damiano AM, Patrick DL, Guzman GI, Gawel MJ, Gelinas DF, Natter HM, Ingalls KK. Measurement of health-related quality of life in patients with amyotrophic lateral sclerosis in clinical trials of new therapies. Med Care. 1999;37:15-26.
21. McGuire D, Garrison L, Armon C, Barohn R, Bryan W, Miller R, et al. Relationship of the Tufts Quantitative Neuromuscular Exam (TQNE) and the Sickness Impact Profile (SIP) in measuring progression of ALS. Neurology. 1996;46:1442-4.
22. 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. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999;169:13-21.
23. 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;3:123-9.
24. Hogg KE, Goldstein LH, Leigh PN. The psychological impact of motor neuron disease. Psychol Med. 1994;24: 625-32.
25. Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000;62:271-9.
26. Dal Bello Haas V, Andrews Hinders D, Bocian J, Mascha E, Wheeler T, Mitsumoto H. Spiritual well-being of the individual with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:337-41.
27. Cohen SR, Mount BM, Strobel MG, Bui F. 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. Palliative Medicine. 1995;9:207-9.
28. Bremer BA, Simone AL, Walsh S, Simmons Z, Felgoise SH. Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis: The role of positive selfperception and religiosity. Ann Behav Med. 2004;28:119-25.
29. Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology. 2000;55:388-92.
30. Chio A, Gauthier A, Montuschi A, Calvo A, Di Vito N, Ghiglione P, Mutani R. A cross-sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatry. 2004;75:1597-601.
31. Walsh SM, Bremer BA, Felgoise SH, Simmons Z. Religiousness is related to quality of life in patients with ALS. Neurology. 2003;60:1527-9.
32. Lou JS, Reeves A, Benice T, Sexton G. Fatigue and depression are associated with poor quality of life in ALS. Neurology. 2003;60:122-3.
33. Trail M, Nelson ND, Van JN, Appel SH, Lai EC. 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.
34. Nygren I, Askmark MD. Self-reported quality of life in amyotrophic lateral sclerosis. Journal of Palliative Medicine. 2006;9:304-8.
35. McGuire D, Garrison L, Armon C, Barohn RJ, Bryan WW, Miller R, et al. A brief quality of life measure for ALS clinical trials based on a subset of items from the sickness impact profile. The Syntex-Synergen ALS/CNTF Study Group. J Neurol Sci. 1997;152(Suppl 1):S18-22.
36. 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.
37. Bromberg MB, Forshew DA. Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology. 2002;58:320-2.
38. Jenkinson C, Fitzpatrick R, Brennan C, Bromberg M, Swash M. Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neuron disease: The ALSAQ-40. J Neurol. 1999;246(Suppl 3):16-21.
39. Jenkinson C, Levvy G, Fitzpatrick R, Garratt A. The Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40): Tests of data quality, score reliability and response rate in a survey of patients. J Neurol Sci. 2000;180:94-100.
40. Green C, Kiebert G, Murphy C, Mitchell JD, O'Brien M, Burrell A, Leigh PN. Patients' health-related quality of life and health state values for motor neuron disease/amyotrophic lateral sclerosis. Qual Life Res. 2003;12:565-74.
41. Kiebert GM, Green C, Murphy C, Mitchell JD, O'Brien M, Burrell A, Leigh PN. Patients' health related quality of life and utilities associated with different stages of amyotrophic lateral sclerosis. J Neurol Sci. 2001;191:87-93.
42. Jenkinson C, Norquist JM, Fitzpatrick R. Deriving summary indices of health status from the Amyotrophic Lateral Sclerosis Assessment Questionnaires (ALSAQ-40 and ALSAQ-5). J Neurol Neurosurg Psychiatry. 2003;74:242-5.
43. Jenkinson C, Fitzpatrick R. Reduced item set for the amyotrophic lateral sclerosis assessment questionnaire: Development and validation of the ALSAQ-5. J Neurol Neurosurg Psychiatry. 2001;70:70-3.
44. Jenkinson C, Fitzpatrick R, Brennan C, Swash M. Evidence for the validity and reliability of the ALS assessment questionnaire: The ALSAQ-40. Amyotroph Lateral Scler Other Motor Neuron Disord. 1999;1:33-40.
45. Yamaguchi T, Ohbu S, Saito M, Ito Y, Moriwaka F, Tashiro K, et al. Validity and clinical applicability of the Japanese version of Amyotrophic Lateral Sclerosis Assessment Questionnaire 40 (ALSAQ-40). Translated from the Japanese No to Shinkei - Brain and Nerve. 2004;56:483-94.
46. Jenkinson C, Peto V, Jones G, Fitzpatrick R. Interpreting change scores on the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Clin Rehabil. 2003; 17:380-5.
47. Norquist JM, Fitzpatrick R, Jenkinson C. Health-related quality of life in amyotrophic lateral sclerosis: Determining a meaningful deterioration. Qual Life Res. 2004;13:1409-14.
48. Norquist JM, Fitzpatrick R, Jenkinson C. Rasch measurement in the assessment of amyotrophic lateral sclerosis patients. J Appl Meas. 2003;4:249-57.
49. Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ASQSQOL: Balancing physical and non-physical factors in assessing quality of life. Neurology. 2006;67:1659-64.
50. The WHOQOL Group. The development of the World Health Organization Quality of Life assessment instrument (the WHOQOL). Quality of life assessment: International Perspectives (ed. Orley I, Kuyken W.) 1994, Spinger-Verlag, Heidberg.
51. O'Boyle CA, McGee H, Hickey A, O'Malley K, Joyce CRB. Individual quality of life in patients undergoing hip replacement. Lancet. 1992;339:1088-91.
52. McGee H, O'Boyle CA, Hickey A, O'Malley K, Joyce CRB. Assessment of quality of life in the individual: The SEIQoL with a healthy and gastroenterology unit population. Psychological Medicine. 1991;21:749-59.
53. Clarke S, Hickey A, O'Boyle C, Hardiman O. Assessing individual quality of life in amyotrophic lateral sclerosis. Qual Life Res. 2001;10:149-58.
54. Lo Coco G, Lo Coco D, Cicero V, Oliveri A, Lo Verso G, Piccoli F, La Bella V. Individual and health related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. Journal of the Neurological Sciences. 2005;238:11-7.
55. Lo Coco G, Lo Coco D, Cicero V, Oliveri A, Lo Verso G, Piccoli F, La Bella V. Editorial: Individual and health related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. Journal of the Neurological Sciences. 2005;238:1-2.
56. Fegg MJ, Wasner M, Neudert C, Domenico Borasio G. Personal values and individual quality of life in palliative care patients. Journal of Pain and Symptom Management. 2005;30:154-9.
57. Dolan P. Modelling valuations for EuroQoL health states. Med Care. 1997;35:1095-108.
58. Riviere M, Meininger P, Zeisser P, Munsat T. An analysis of extended survival in patients with amyotrophic lateral sclerosis treated with riluzole. Arch Neurol. 1998; 55:526-8.
59. 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):S134-6.