468
Views
19
CrossRef citations to date
0
Altmetric
ORIGINAL ARTICLE

Measuring life quality, physical function and psychological well-being in neurological illness

, &
Pages 461-468 | Received 08 Mar 2009, Accepted 12 Dec 2009, Published online: 02 Mar 2010

References

  • Hirtz D, Thurman DJ, Gwinn-Hardy K, Mohamed M, Chaudhuri AR, Zalutsky R. How common are the ‘common ‘neurological disorders’? Neurology. 2007;68:326–37.
  • Kristjanson LJ, Aoun SM, Oldham L. Palliative care and support for people with neurodegenerative conditions and their carers. Int J Palliat Nurs. 2006;12:368–77.
  • O'Boyle CA, Waldron D. Quality of life issues in palliative medicine. J Neurol. 1997;244 (Suppl 4):S18–25.
  • Mitsumoto H, Del Bene M. Improving the quality of life for people with ALS: the challenge ahead. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:329–36.
  • Goodyear-Smith FA. Palliative care service needs of motor neuron disease patients. Journal of Palliative Care. 2005;21:117–25.
  • Miller RG, Rosenberg JA, Gelinas DF, Mitsumoto H, Newman D, Sufit R, . Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology: ALS Practice Parameters Task Force. Neurology. 1999;52:1311–23.
  • Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW. A health related quality of life measure for multiple sclerosis. Qual Life Res. 1995;4:187–206.
  • Benito-Leon J, Martinez-Martin P, Frades B, Martinez-Gines ML, de Andres C, Meca-Lallana JE, . Impact of fatigue in multiple sclerosis: the Fatigue Impact Scale for Daily Use (D-FIS). Multiple Sclerosis (Houndmills, Basingstoke, England). 2007;13:645–51.
  • Benedict RH, Wahlig E, Bakshi R, Fishman I, Munschauer F, Zivadinov R, . Predicting quality of life in multiple sclerosis: accounting for physical disability, fatigue, cognition, mood disorder, personality, and behaviour change. Journal of the Neurological Sciences. 2005;231:29–34.
  • Siegert RJ, Abernethy DA. Depression in multiple sclerosis: a review. J Neurol Neurosurg Psychiatry. 2005;76:469–75.
  • Winkelmann A, Engel C, Apel A, Zettl UK. Cognitive impairment in multiple sclerosis. J Neurol. 2007;254 (Suppl 2):35–42.
  • Petrie KJ, Jago LA, Devcich DA. The role of illness perceptions in patients with medical conditions. Curr Opin Psychiatry. 2007;20:163–7.
  • Leigh PN, Swash M, Iwasaki Y, Ludolph A, Meininger V, Miller RG, . Amyotrophic lateral sclerosis: a consensus viewpoint on designing and implementing a clinical trial. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:84–98.
  • Murrell R. Quality of life and neurological illness: a review of the literature. Neuropsychol Rev. 1999;9:209–29.
  • 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.
  • The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41:1403–9.
  • Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, . The ALSSQOL: balancing physical and non-physical factors in assessing quality of life in ALS. Neurology. 2006;67:1659–64.
  • 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.
  • 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.
  • O'Boyle CA, McGee H, Hickey A, O'Malley K, Joyce CR. Individual quality of life in patients undergoing hip replacement. Lancet. 1992;339:1088–91.
  • 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;313:29–33.
  • 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.
  • Chio A, Gauthier A, Montuschi A, Calvo A, Di Vito N, Ghiglione P, . A cross-sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatry. 2004;75:1597–601.
  • 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.
  • Lintern TC, Beaumont JG, Kenealy PM, Murrell RC. Quality of Life (QoL) in severely disabled multiple sclerosis patients: comparison of three QoL measures using multidimensional scaling. Qual Life Res. 2001;10:371–8.
  • Hardiman O, Hickey A, O'Doherty LJ. Physical decline and quality of life in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:230–4.
  • Bradley C. Importance of differentiating health status from quality of life. Lancet. 2001;357:7–8.
  • Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
  • McDonald WI, Compston A, Edan G, Goodkin D, Hartung HP, Lublin FD, . Recommended diagnostic criteria for multiple sclerosis: guidelines from the International Panel on the diagnosis of multiple sclerosis. Annals of Neurology. 2001;50:121–7.
  • Fries JF, Spitz PW, Young DY. The dimensions of health outcomes: the health assessment questionnaire, disability and pain scales. J Rheumatol. 1982;9:789–93.
  • Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, . The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). Journal of the Neurological Sciences. 1999;169:13–21.
  • Jenkinson C, Layte R, Jenkinson D, Lawrence K, Petersen S, Paice C, . A shorter form health survey: can the SF-12 replicate results from the SF-36 in longitudinal studies? J Public Health Med. 1997;19:179–86.
  • Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.
  • Siegert CE, Vleming LJ, van den Broucke JP, Cats A. Measurement of disability in Dutch rheumatoid arthritis patients. Clin Rheumatol. 1984;3:305–9.
  • Layte R, Jenkinson C. Normative data for the SF-12 health survey in the Republic of Ireland with comparisons to England. Ir J Psychol. 2001;21:63–71.
  • Bourke SC, Shaw PJ, Gibson GJ. Respiratory function versus sleep-disordered breathing as predictors of QoL in ALS. Neurology. 2001;57:2040–4.
  • 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.
  • Karoly P, Ruehlman LS. Psychological ‘resilience’ and its correlates in chronic pain: findings from a national community sample. Pain. 2006;123:90–7.
  • Rabkin JG, Albert SM, Del Bene ML, O'Sullivan I, Tider T, Rowland LP, . Prevalence of depressive disorders and change over time in late-stage ALS. Neurology. 2005;65:62–7.
  • Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, . A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007;68:923–6.
  • Patten SB, Beck CA, Williams JV, Barbui C, Metz LM. Major depression in multiple sclerosis: a population based perspective. Neurology. 2003;61:1524–7.
  • Feinstein A, Roy P, Lobaugh N, Feinstein K, O'Connor P, Black S. Structural brain abnormalities in multiple sclerosis patients with major depression. Neurology. 2004;62:586–90.
  • Mitchell AJ, Benito-Leon J, Gonzalez JM, Rivera-Navarro J. Quality of life and its assessment in multiple sclerosis: integrating physical and psychological components of well-being. Lancet Neurol. 2005;4:556–66.
  • Mohr DC, Cox D. Multiple sclerosis: empirical literature for the clinical health psychologist. J Clin Psychol. 2001;57:479–99.
  • Boeije HR, Janssens AC. “It might happen or it might not”: how patients with multiple sclerosis explain their perception of prognostic risk. Soc Sci Med. 2004;59:861–8.
  • Kroencke DC, Denney DR, Lynch SG. Depression during exacerbations in multiple sclerosis: the importance of uncertainty. Multiple sclerosis. (Houndmills, Basingstoke, England). 2001;7:237–42.
  • Lo Coco G, Lo Coco D, Cicero V, Oliveri A, Lo Verso G, Piccoli F, . 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.
  • 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.
  • Nygren I, Askmark H. Self-reported quality of life in amyotrophic lateral sclerosis. J Palliat Med. 2006;9:304–8.
  • Neudert C, Wasner M, Borasio GD. Patients’ assessment of quality of life instruments: a randomized study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. Journal of the Neurological Sciences. 2001;191:103–9.
  • Waldron D, O'Boyle CA, Kearney M, Moriarty M, Carney D. Quality of life measurement in advanced cancer: assessing the individual. J Clin Oncol. 1999;17:3603–11.
  • LeVasseur SA, Green S, Talman P. The SEIQoL-DW is a valid method for measuring individual quality of life in stroke survivors attending a secondary prevention clinic. Qual Life Res. 2005;14:779–88.
  • Wettergren L, Kettis-Lindblad A, Sprangers M, Ring L. The use, feasibility and psychometric properties of an individualized quality of life instrument: a systematic review of the SEIQoL-DW. Qual Life Res. 2009;18:737–46.
  • Moore M, Hofer S, McGee H, Ring L. Can the concepts of depression and quality of life be integrated using a time perspective? Health Qual Life Outcomes. 2005;3:1.
  • Felgoise SH, Stewart JL, Bremer BA, Walsh SM, Bromberg MB, Simmons Z. Amyotroph Lateral Scler. 2009;10:456–62.
  • Carver CS, Scheier MF. Scaling back goals and recalibration of the affect system are processes in normal adaptive self-regulation: understanding ‘response shift’ phenomena. Soc Sci Med. 2000;50:1715–22.
  • Schwartz CE, Bode R, Repucci N, Becker J, Sprangers MA, Fayers PM. The clinical significance of adaptation to changing health: a meta-analysis of response shift. Qual Life Res. 2006;15:1533–50.
  • Wrosch C, Scheier MF, Miller GE, Schulz R, Carver CS. Adaptive self-regulation of unattainable goals: goal disengagement, goal reengagement, and subjective well-being. Pers Soc Psychol Bull. 2003;29:1494–508.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.