Journal of the Neurological Sciences
Volume 238, Issue 1 , Pages 11-17 , 15 November 2005

Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers

  • Gianluca Lo Coco

      Affiliations

    • Dipartimento di Psicologia, Università degli Studi di Palermo, Viale Delle Scienze, Edificio 15, 90128, Palermo, Italy
    • ALS Research Centre, Dipartimento di Neurologia, Oftalmologia, Otorinolaringoiatria e Psichiatria, Università degli Studi di Palermo, Via G. La loggia 1, 90129, Palermo, Italy
    • Corresponding Author InformationCorresponding author. Dipartimento di Psicologia, Università degli Studi di Palermo, Viale Delle Scienze, Edificio 15, 90128, Palermo, Italy. Tel.: +39 91 7028450; fax: +39 91 7028430.
  • ,
  • Daniele Lo Coco

      Affiliations

    • ALS Research Centre, Dipartimento di Neurologia, Oftalmologia, Otorinolaringoiatria e Psichiatria, Università degli Studi di Palermo, Via G. La loggia 1, 90129, Palermo, Italy
  • ,
  • Viviana Cicero

      Affiliations

    • Dipartimento di Psicologia, Università degli Studi di Palermo, Viale Delle Scienze, Edificio 15, 90128, Palermo, Italy
  • ,
  • Antonino Oliveri

      Affiliations

    • Dipartimento di Metodi Quantitativi per le Scienze Umane, Università degli Studi di Palermo, Viale Delle Scienze, 90128, Palermo, Italy
  • ,
  • Girolamo Lo Verso

      Affiliations

    • Dipartimento di Psicologia, Università degli Studi di Palermo, Viale Delle Scienze, Edificio 15, 90128, Palermo, Italy
  • ,
  • Federico Piccoli

      Affiliations

    • ALS Research Centre, Dipartimento di Neurologia, Oftalmologia, Otorinolaringoiatria e Psichiatria, Università degli Studi di Palermo, Via G. La loggia 1, 90129, Palermo, Italy
  • ,
  • Vincenzo La Bella

      Affiliations

    • ALS Research Centre, Dipartimento di Neurologia, Oftalmologia, Otorinolaringoiatria e Psichiatria, Università degli Studi di Palermo, Via G. La loggia 1, 90129, Palermo, Italy

Received 30 December 2004 ,Revised 24 April 2005 ,Accepted 23 May 2005.

References 

  1. Mulder DW, Howard FM. Patient resistance and prognosis in amyotrophic lateral sclerosis. Mayo Clin Proc. 1976;51:537–541
  2. Krivickas LS, Shockley L, Mitsumoto H. Home care of patients with amyotrophic lateral sclerosis (ALS). J Neurol Sci. 1997;152(Suppl. 1):S82–S89
  3. Jenkinson C, Fitzpatrick R, Swash M, Peto V ALS-HPS Steering Group. The ALS health profile study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol. 2000;247:835–840
  4. Bromberg MB, Forshew DA. Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology. 2002;58:320–322
  5. 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
  6. Gelinas DF, Connor O'P, Miller RG. Quality of life for ventilator-dependent ALS patients and their caregivers. J Neurol Sci. 1998;160(Suppl. 1):S134–S136
  7. Brooks BR, Miller RG, Swash M, Munsat TL. World federation of neurology research group on motor neuron diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Mot Neuron Disord. 2000;1:239–293
  8. The Amyotrophic Lateral Sclerosis Functional Rating Scale . Assessment of activities of daily living in patients with amyotrophic lateral sclerosis. The ALS CNTF treatment study (ACTS) phase I–II study group. Arch Neurol. 1996;53:141–147
  9. Hickey A, 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. BMJ. 1996;313:29–33
  10. Trail M, Nelson ND, Van JN, Appel SH, Lai EC. 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 Other Mot Neuron Disord. 2004;5:40–45
  11. Brod M, Mendelsohn GA, Roberts B. Patients' experiences of Parkinson's disease. J Geront B Psychol Sci Soc Sci. 1998;53:213–222
  12. Frazier LD. Coping with disease-related stressors in Parkinson's disease. Gerontologist. 2000;40:53–63
  13. The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28:551–558
  14. The WHOQOL Group. The World Health Organization quality of life assessment (WHOQOL): development and general psychometric properties. Soc Sci Med. 1998;46:1569–1585
  15. De Girolamo G, Rucci P, Scocco P, Becchi A, Coppa F, D'Addario A, et al. Quality of life assessment: validation of the Italian version of the WHOQOL-Brief. Epidemiol Psichiatr Soc. 2000;9:45–55
  16. Skevington SM, Lofty M, O'Connell KA WHOQOL Group. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res. 2004;13:299–310
  17. Sneath PHA, Sokal RR. Numerical taxonomy. San Francisco: Freeman; 1973;
  18. World Health Organization . Cancer pain relief and palliative care. Geneva: WHO; 1990;
  19. 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
  20. Waldron D, O'Boyle CA, Kearny M, Moriarty M, Carney D. Quality-of-life measurement in advanced cancer: assessing the individual. J Clin Oncol. 1999;17:3603–3611
  21. 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
  22. Kagawa-Singer M. Redefining health: living with cancer. Soc Sci Med. 1993;37:295–304
  23. O'Boyle CA, Waldron D. Quality of life issues in palliative medicine. J Neurol. 1997;244(Suppl. 4):S18–S25
  24. 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
  25. Hecht M, Hillemacher T, Grasel E, Tigges S, Winterholler M, Heuss D, et al. Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Mot Neuron Disord. 2002;3:225–232
  26. 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
  27. Walsh SM, Bremer BA, Felgoise SH, Simmons Z. Religiousness is related to quality of life in patients with ALS. Neurology. 2003;60:1527–1529

PII: S0022-510X(05)00228-5

doi: 10.1016/j.jns.2005.05.018

Journal of the Neurological Sciences
Volume 238, Issue 1 , Pages 11-17 , 15 November 2005