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Research Article

Physical decline and quality of life in amyotrophic lateral sclerosis

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Pages 230-234 | Published online: 10 Jul 2009

References

  • Traynor BJ, Codd MB, Corr B, Forde C, Frost E, Hardiman OM. Clinical features of amyotrophic lateral sclerosis according to the El Escorial and Airlie House diagnostic criteria: a population- based study. Arch Neurol 2000; 57: 1171–1176.
  • Chio A, Mora G, Leone M et al; Piemonte and Valle d’Aosta Register for ALS (PARALS). Early symptom progression rate is related to ALS outcome: a prospective population-based study. Neurology 2002; 59: 99–103.
  • Brooks BR. In: Hendron RM, ed. Handbook of Clinical Rating Scales. New York: Demos Vermande, 1997: 31–80.
  • Cedarbaum JM, Stambler N, Malta E et al. 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.
  • Ono Pharmaceutical Steering Group: Ono 2506. Personal Communication.
  • Waldron D. Quality of life in palliative care settings: assessing the individual. Unpublished MD thesis. National University of Ireland, Galway, 1997.
  • Bowling A. Measuring Disease. Buckingham: Open University Press, 1995.
  • Bowling A. Measuring health: a review of quality of life measurement scales. Buckingham: Open University Press, 1997.
  • Stewart AL, Sherbourne CD, Hays RD et al. Summary and discussion of MOS measures. In: Stewart AL, Ware JE, eds. Measuring function and well-being: the Medical Outcome Study approach. Durham (NC): Duke University Press, 1992.
  • Stewart AL, Hays RD, Ware JE. The MOS short-form general health survey: reliability and validity in a patient population. Med Care 1998; 26: 724–735.
  • Ware JE, Sherbourne CD. The MOS-36 item short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care 1992; 30: 473–481.
  • Brazier JE, Harper R, Jones N et al. Validating the SF-36 health survey questionnaire: a new outcome measure for primary care. Br Med J 1992; 305: 160–164.
  • Bergner M, Bobbitt RA, Carter WB et al. The Sickness Impact Profile: development and final revision of a health status measure. Med Care 1981; 19: 787–805.
  • Bergner M. Development, testing and use of the Sickness Impact Profile. In: Walker SR, Rosser RM, eds. Quality of life assessment: key issues in the 1990s. Boston (MA): Kluwer Academic Publishers, 1993.
  • Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW. A health-related quality of life measure for multiple sclerosis. Quality of Life Research 1995; 4: 187–206.
  • Meenan RF, Gertmen PM, Mason JH. Measuring health status in arthritis: The Arthritis Impact Measurement Scales. Arthritis and Rheumatism 1980; 23: 146–152.
  • Meenan RF, Mason JH. AIMS2 Users’ Guide. Boston, MA: Boston University School of Medicine, Department of Public Health, 1990.
  • Perrine KR. A new quality of life inventory for epilepsy patients: interim results. Epilepsia 1993; 34 (Suppl): S28–S33.
  • Nord E. Methods for quality adjustment of life years. Social Science and Medicine 1992; 34: 559–569.
  • Phillips C, Thompson G. What is a QALY? London: Hayward, 1998.
  • Murray CJL. Quantifying the burden of disease: the technical basis for disability-adjusted life years. Bulletin of the World Health Organisation 1994; 72: 429–445.
  • Murray CJL, Acharya AK. Understanding DALYs. Journal of Health Economics 1997; 16: 703–730.
  • Kaplan RM, Anderson JP. The General Health Policy model: an integrated approach. In: Spilker B, ed. Quality of life and pharmacoeconomics in clinical trials. 2nd edn. Philadelphia (PA): Lippincott-Raven Publishers, 1996.
  • Kaplan RM, Sieber WJ, Ganlats TG. The Quality of Well-being scale: comparison of the interview-administered version with a self-administered questionnaire. Psychol Health 1997; 12: 783–791.
  • The EuroQol Group. EuroQol: a new facility for the measure- ment of health-related quality of life. Health Policy 1990; 16: 199–208.
  • Kind P. The EuroQol instrument, and index of health-related quality of life. In: Spilker B, ed. Quality of life and pharmacoeconomics in clinical trials. 2nd edn. Philadelphia (PA): Lippincott-Raven Publishers, 1996.
  • 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: 242–245.
  • Mitchell JD, O’Brien MR. Quality of life in motor neuron disease: towards a more practical assessment tool? J Neurol Neurosurg Psychiatry 2003; 74: 287–288.
  • Jenkinson C, Hobart J, Chandola T, Fitzpatrick R, Peto V, Swash M; ALS-HPS Steering Group. Amyotrophic Lateral Sclerosis Health Profile Study. 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.
  • Borasio GD. Measures of quality of life: con. ALS and other Motor Neuron Disorders 2002; Suppl 1: S21–S23.
  • Hickey AM, Barker M, McGee HM, O’Boyle CA. Measuring health-related quality of life in older patient populations: a review of current approaches. Pharmacoeconomics. (In Press.)
  • Bradley C. Importance of differentiating health status from quality of life. Lancet 2001; 357: 7–8.
  • Patrick DL, Erickson P. Health status and health policy. Oxford: Oxford University Press, 1993.
  • McGuire D, Garrison L, Armon C et al. Relationship of the Tufts Quantitative Neuromuscular Exam (TQNE) and the Sickness Impact Profile (SIP) in measuring progression of ALS. SSNJV/CNTF ALS Study Group. Neurology 1996; 46: 1442– 1444.
  • Damiano AM, Patrick DL, Guzman GI et al. Measurement of health-related quality of life in patients with amyotrophic lateral sclerosis in clinical trials of new therapies. Med Care 1999; 37: 15–2.
  • 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. TheSyntex-Synergen ALS/CNTF Study Group. J Neurol Sci 1997; 152 (Suppl 1): S18–S2.
  • Clarke S, Hickey A, O’Boyle C, Hardiman O. Assessing individual quality of life in amyotrophic lateral sclerosis. Qual Life Res 2001; 10: 149–158.
  • 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.
  • 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: 207–219.
  • Pratheepawanit N, Salek MS, Finlay IG. The applicability of quality-of-life assessment in palliative care: comparing two quality-of-life measures. Palliative Medicine 1999; 13: 325–334.
  • Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demon- strating the importance of the existential domain. Palliative Medicine 1997; 11: 320.
  • Cohen SR, Leis A. What determines the quality of life of terminally ill cancer patients from their own perspective? Pallia- tive Care 2002; 18: 48–58.
  • Ruta DA, Garratt AM, Leng M, Russell IT, MacDonald LM. A new approach to the measurement of quality of life: the Patient- Generated Index. Medical Care 1994; 32: 1109–1126.
  • Ferrans CE, Powers MJ. Quality of Life Index: development and psychometric properties. Advances in Nursing Science 1985; 8: 15–24.
  • O’Boyle CA, McGee HM, Hickey A et al. Individual quality of life in patients undergoing hip replacement. Lancet 1992; 339: 1088–1091.
  • Hickey AM, Bury G, O’Boyle CA, Bradley F, O’Kelly FD, Shannon W. A new short form individual quality of life measure (SEIQoL- DW): application in a cohort of individuals with HIV/AIDS. Br Med J 1996; 313: 29–3.
  • 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.
  • Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology 2001; 56: 442–444.
  • 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: 388–392.
  • Clarke S, PhD Thesis. Individual quality of life and psychological adaptation in motor neuron disease. Unpublished MSc Thesis, Royal College of Surgeons in Ireland and National University of Ireland, Dublin, 2001.
  • Croyle RT. Appraisal of health threats: cognition, motivation and social comparison. Cognitive Therapy 1992; 16: 165–182.
  • Bennenbroek FTC, Buunk BT, Stiegelis HE et al. Audiotaped social comparison information for cancer patients undergoing radiotherapy: differential effects of procedural emotional and coping information. Psycho-Oncology 2003; 12: 567–579.

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