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Assessing individual quality of life in amyotrophic lateral sclerosis

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Abstract

Background: Quality of life (QoL) assessment in amyotrophic lateral sclerosis (ALS) has typically involved the use of general or disease-specific health status questionnaires. This study assessed the feasibility of using a patient-centered approach to QoL measurement in ALS. Objectives: (1) To assess the internal consistency reliability and validity of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) as a measure of QoL in ALS. (2) To provide a brief description of QoL in ALS, and to examine the relationships between QoL, illness severity and psychological distress in this group. Methods: Twenty-six patients with ALS were recruited through the Irish Register for ALS/motor neurone disease (MND). Illness severity was assessed with the ALS Functional Rating Scale (ALSFRS). Levels of psychological distress were measured with the Hospital Anxiety and Depression Scale (HADS). Individual QoL was assessed with SEIQoL. Results: Patients were at various stages of ALS. Mean levels of anxiety and depression were in the normal range. Twenty-one patients completed SEIQoL; five patients completed a shorter version, SEIQoL-Direct Weighting (SEIQoL-DW). Internal consistency reliability and validity results for SEIQoL were high. Conclusions: SEIQoL is generally acceptable for use in ALS in terms of its practical feasibility, and has high internal validity and consistency reliability in this patient group. However, patients severely disabled by ALS may not be able to complete SEIQoL; further research is required to confirm the use of SEIQoL-DW as an alternative measure of individual QoL in ALS.

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References

  1. Traynor BJ, Hardiman O. Motor neurone disease: Clinical features and management. Clinical Medicine 1998; 24: 32-33.

    Google Scholar 

  2. Gill TM, Feinstein AR. A critical appraisal of the quality of quality of life measurements. JAMA 1994; 272: 619-626.

    Article  PubMed  CAS  Google Scholar 

  3. Cella DF. Quality of life: The concept. Palliative Care 1992; 8: 8-13.

    CAS  Google Scholar 

  4. Joyce CRB, O'Boyle CA, McGee H (eds). Individual quality of life. Approaches to conceptualisation and assessment. Singapore: Harwood Academic Publishers, 1999.

    Google Scholar 

  5. Editorial. Quality of life and clinical trials. Lancet 1995; 346: 1-2.

  6. Swash M. Health outcome and quality of life measurements in amyotrophic lateral sclerosis. J Neurol 1997; 244(Suppl 2): S26-S29.

    Article  PubMed  Google Scholar 

  7. Murrell R. Quality of life and neurological illness: A review of the literature. Neuropsychol Rev 1999; 4: 209-229.

    Article  Google Scholar 

  8. O'Boyle CA, Waldron D. Quality of life issues in palliative medicine. J Neurol 1997; 244(Suppl 4): S18-S25.

    Article  PubMed  Google Scholar 

  9. Young CA, Tedman BM, Williams IR. Disease progression and perceptions of health in patients with motor neurone disease. J Neurol Sci 1995; 129: 50-53.

    Article  PubMed  Google Scholar 

  10. Tedman BM, Young CA, Williams IR. Assessment of depression in patients with depression and other neurologically disabling illness. J Neurol Sci 1997; 152(Suppl 1): S75-S79.

    Article  PubMed  Google Scholar 

  11. Hogg KE, Goldstein LH, Leigh PN. The psychological impact of motor neurone disease. Psychol Med 1994; 24: 625-632.

    PubMed  CAS  Google Scholar 

  12. McGuire D, Garrison L, Armon C, et al. Relationship of the tufts quantitative neuromuscular exam (TQNE) and the sickness impact profile in measuring progression in ALS. Neurology 1996; 46: 1442-1444.

    PubMed  CAS  Google Scholar 

  13. 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(1): 15-26.

    Article  PubMed  CAS  Google Scholar 

  14. Hunter MD, Robinson IC, Neilson S. The functional and psychological status of patients with amyotrophic lateral sclerosis: Some implications for rehabilitation. Disabil Rehabil 1993; 15: 119-126.

    Article  PubMed  CAS  Google Scholar 

  15. Nordeson A, Engstrom B, Norberg A. Self-reported quality of life for patients with progressive neurological diseases. Qual Life Res 1998; 7: 257-266.

    PubMed  CAS  Google Scholar 

  16. 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. J Neurol Sci 1997; 152: S18-S22.

    Article  PubMed  Google Scholar 

  17. 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 neurone disease: The ALSAQ-40. J Neurol 1999; 246(Suppl 3): 16-21.

    Article  Google Scholar 

  18. McGee HM, O'Boyle CA, Hickey A, Joyce CRB, O'Malley K. Assessing the quality of life of the individual: the SEIQoL with a healthy and a gastroenterology unit population. Psych Med 1991; 21: 749-759.

    Article  CAS  Google Scholar 

  19. O'Boyle C, McGee H, Hickey A, O'Malley K, Joyce CRB. Individual quality of life in patients undergoing hip-replacement. Lancet 1992; 339: 1088-1091.

    Article  PubMed  Google Scholar 

  20. Traynor BJ, Codd MB, Corr B, Forde C, Frost E, Hardiman O. Incidence and prevalence of ALS in Ireland, 1995–1997: A population-based study. Neurology 1999; 52(Suppl 3): 504-509.

    PubMed  CAS  Google Scholar 

  21. Brooks BR. El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial ‘Clinical limits of amyotrophic lateral sclerosis’ workshop contributors. J Neurol Sci 1994; 124: 96-107.

    Article  PubMed  Google Scholar 

  22. The ALS CNTF Treatment Study (ACTS) Phase 1–2 Study group. The amyotrophic lateral sclerosis functional rating scale, assessment of activities of daily living in patients with ALS. Arch Neurol 1996; 53: 141-147.

    Google Scholar 

  23. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67: 361-370.

    PubMed  CAS  Google Scholar 

  24. O'Boyle C, McGee HM, Hickey A, et al. The schedule for the evaluation of individual quality of life (SEIQoL): Administartion manual. Dublin: Department of Psychology, Royal College of Surgeons in Ireland, 1993.

    Google Scholar 

  25. Hickey AM, Bury G, O'Boyle CA, Bradley F, O'Reilly F, 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.

    CAS  Google Scholar 

  26. Browne JP, O'Boyle CA, McGee HM, et al. Individual quality of life in the healthy elderly. Qual Life Res 1994; 3: 235-244.

    Article  PubMed  CAS  Google Scholar 

  27. Gardner AP. Living with epilepsy: Quality of life as a dynamic process. Health Psychology Update 1998; 32: 17-21.

    Google Scholar 

  28. Coen R, O'Mahony D, O'Boyle C, et al. Measuring the quality of life of dementia patients using the schedule for the evaluation of individual quality of life. Irish J Psychol 1993; 14(1): 154-163.

    Google Scholar 

  29. Murrell RC, Kenealy PM, Beaumont JG, et al. Assessing quality of life (QoL) in persons with severe neurological disability associated with multiple sclerosis (ms): The psychometric evaluation of two QoL measures. British J Health Psychol 1999; 4: 349-362.

    Article  Google Scholar 

  30. Hickey AM, O'Boyle CA, McGee HM, McDonald NJ. The relationship between post-trauma problem reporting and carer quality of life after severe head injury. Psychol Health 1997; 12: 737-751.

    Google Scholar 

  31. Coen RF, O'Boyle CA, Swanwick GRJ, Coakley D. Measuring the impact on relatives of caring for people with Alzheimer's disease: Quality of life, burden and well-being. Psychol Health 1999; 14: 253-261.

    Google Scholar 

  32. Waldron D, O'Boyle CA, Kearney M, Moriarty M, Carney D. Quality of life measurement in advanced cancer: assessing the individual. JCO 1999; 17: 3603-3611.

    CAS  Google Scholar 

  33. Bocker FM, Seibold I, Neundorfer B. Disability in everyday tasks and subjective status of patients with advanced amyotrophic lateral sclerosis. Fortschr Neurol Psychiatr 1990; 58: 224-236.

    Article  PubMed  CAS  Google Scholar 

  34. Montgomery GK, Erikson LM. Neuropsychological perspectives in ALS. Neurol Clin 1987; 5: 61-81.

    PubMed  CAS  Google Scholar 

  35. Brown WA, Mueller PS. Psychological function in individuals with amyotrophic lateral sclerosis (ALS). Psychosom Med 1970; 32: 141-152.

    PubMed  CAS  Google Scholar 

  36. Houpt JL, Gould BS, Norris FH. Psychological characteristics of patients with amyotrophic lateral sclerosis (ALS). Psychosom Med 1977; 39: 299-303.

    PubMed  CAS  Google Scholar 

  37. Earll L, Johnston M, Mitchell E. Coping with motor neurone disease — an analysis using self-regulation theory. Palliat Med 1993; 7(Suppl 2): 21-30.

    Article  PubMed  CAS  Google Scholar 

  38. Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology 1999; 52: 1434-1440.

    PubMed  CAS  Google Scholar 

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Authors and Affiliations

  1. Department of Psychology, Royal College of Surgeons in Ireland, Dublin, Ireland

    Sarah Clarke, Anne Hickey & Ciaran O'Boyle

  2. Department of Neurology, Beaumont Hospital, Dublin 9, Ireland

    Orla Hardiman

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  1. Sarah Clarke
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  2. Anne Hickey
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  3. Ciaran O'Boyle
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  4. Orla Hardiman
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Clarke, S., Hickey, A., O'Boyle, C. et al. Assessing individual quality of life in amyotrophic lateral sclerosis. Qual Life Res 10, 149–158 (2001). https://doi.org/10.1023/A:1016704906100

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