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

References

• Jenkinson C, Fitzpatrick R, Jenkinson D. Health status measurement in neurological disorders. Radcliffe Medical Press, Abingdon 2000
   Google Scholar
• Fitzpatrick R, Davey C, Buxton M, Jones D. Evaluating patient based outcome measures for use in clinical trials. NHS Health Technology Assessment Programme, London 1997
   Google Scholar
• McDowell I, Jenkinson C. Development standards for health measures. Journal of Health Services Research and Policy. 1996; 1: 238–46
   PubMedGoogle Scholar
• Ware J, Sherbourne C. The MOS 36-item Short-Form Health Survey. 1. conceptual framework and item selection. Medical Care. 1992; 30:473–83.
   PubMed Web of Science ®Google Scholar
• Ware JE, Kosinski M, Keller S. SF-36 Physical and Mental Health Summary Scales: a User Manual. The Health Institute, New England Medical Center, Boston, Massachusetts 1994
   Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Bourke SC, Shaw PJ, Gibson GJ. Respiratory function versus sleep-disordered breathing as predictors of QoL in ALS. Neurology. 2001; 57: 2040–4
   PubMed Web of Science ®Google Scholar
• 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.
   Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMedGoogle Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   Google Scholar
• 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
   Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Hogg KE, Goldstein LH, Leigh PN. The psychological impact of motor neuron disease. Psychol Med. 1994; 24: 625–32
   PubMed Web of Science ®Google Scholar
• Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000; 62: 271–9
   PubMed Web of Science ®Google Scholar
• 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
   PubMedGoogle Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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 self-perception and religiosity. Ann Behav Med. 2004; 28: 119–25
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Walsh SM, Bremer BA, Felgoise SH, Simmons Z. Religiousness is related to quality of life in patients with ALS. Neurology. 2003;60:1527–9.
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Nygren I, Askmark MD. Self-reported quality of life in amyotrophic lateral sclerosis. Journal of Palliative Medicine. 2006; 9: 304–8
   PubMed Web of Science ®Google Scholar
• 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
   Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Bromberg MB, Forshew DA. Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology. 2002; 58: 320–2
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMedGoogle Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Norquist JM, Fitzpatrick R, Jenkinson C. Rasch measurement in the assessment of amyotrophic lateral sclerosis patients. J Appl Meas. 2003; 4: 249–57
   PubMedGoogle Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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.
   Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Dolan P. Modelling valuations for EuroQoL health states. Med Care. 1997; 35: 1095–1108
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar