Skip to main content
Log in

Quality of Life and Neurological Illness: A Review of the Literature

  • Published:
Neuropsychology Review Aims and scope Submit manuscript

Abstract

This article highlights some of the conceptual and methodological problems associated with quality of life (QoL) measurement in individuals with neurological illness. It is suggested that these problems have contributed to the underdeveloped status of QoL research in neurological settings. Many of the existing QoL measures that have been used, or show potential for use with individuals with neurological illness, are reviewed in terms of their theoretical basis, content, and practicality. A large proportion of these measures fail to meet adequate psychometric standards and/or have rarely been psychometrically tested. The confusion that surrounds adequate psychometric standards is discussed, and the dynamic nature of QoL is highlighted as a factor that requires further attention. Research addressing the discrepancies between proxy and patient ratings of patient QoL is also warranted. More focused research in these areas may contribute to a clearer understanding of how to assess QoL in individuals with neurological illness.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

REFERENCES

  • Aaronson, N. K. (1988). Quantitative issues in health-related quality of life assessment. Health Policy 10: 217–230.

    Google Scholar 

  • Allison, P. J., Locker, D., and Feine, J. S. (1997). Quality of life: A dynamic construct. Social Science and Medicine 45: 221–230.

    Google Scholar 

  • Anderson, C., Laubscher, S., and Burns, R. (1996). Validation of the Short Form 36 (SF-36) Health Survey questionnaire among stroke patients. Stroke 27: 1812–1816.

    Google Scholar 

  • Andrews, F. M. (1981). Subjective Social Indicators, Objective Social Indicators and Social Accounting Systems, Academic Press, New York.

    Google Scholar 

  • Andrews, F. M., and Withey, S. B. (1976). Social Indicators of Well-Being: Americans' Perceptions of Life Quality, Plenum Press, New York.

    Google Scholar 

  • Atkinson, T. (1982). The stability and validity of quality of life measures. Social Indicators Research 10: 113–132.

    Google Scholar 

  • Baker, G. A., Jacoby, A., Smith, D. F., Dewey, M. E., and Chadwick, D. W. (1994). Development of a novel scale to assess life fulfillment as part of the further refinement of a quality of life model for epilepsy. Epilepsia 35: 591–596.

    Google Scholar 

  • Baker, G. A., Smith, D. F., Dewey, M. E., Jacoby, A., and Chadwick, D. W. (1993). The initial development of a health-related quality of life model as an outcome measure in epilepsy. Epilepsy Research 16: 65–81.

    Google Scholar 

  • Bergner, M., Bobbitt, R. A., Kressel, S., Pollard, W. E., Gibson, B. S. S., and Morris, J. R. (1976). The Sickness Impact Profile: Conceptual formulation and methodology for the development of a health status measure. International Journal of Health Services 6: 393–415.

    Google Scholar 

  • Bergsma, J., and Duff, R. S. (1980). A model for examining values and decision-making in the patient-doctor relationship. Pharos of Alpha Omega Alpha Honor Medical Society 43: 7–12.

    Google Scholar 

  • Bergsma, J., and Engel, G. L. (1988). Quality of life: Does measurement help? Health Policy 10: 267–279.

    Google Scholar 

  • Borthwick-Duffy, S. A. (1992). Quality of life and quality of care in mental retardation. In Rowitz, L. (ed.), Mental Retardation in the Year 2000, Springer-Verlag, New York, pp. 52–66.

    Google Scholar 

  • Bowling, A. (1995). Measuring Disease, Open University Press, Buckingham, England.

    Google Scholar 

  • Brazier, J., Jones, H., and Kind, P. (1993). Testing the validity of the EuroQoL and comparing it with the SF-36 Health Survey questionnaire. Quality of Life Research 2: 169–180.

    Google Scholar 

  • Brown, R. I., and Bayer, M. B. (1992). Rehabilitation questionnaire manual: A personal guide to the individual's quality of life. Ontario: Captus Press.

    Google Scholar 

  • Brownscombe, I., Laupacis, A., Rice, G. P. A., Ebers, G. C., and Noseworthy, J. H. (1990). Development of a disease-specific quality of life measure for multiple sclerosis. Neurology 40: 142.

    Google Scholar 

  • Brunet, D. G., Hopman, W. M., Singer, M. A., Edgar, C. M., and MacKenzie, T. A. (1996). Measurement of health-related quality of life in multiple sclerosis. Canadian Journal of Neurological Science 23: 99–103.

    Google Scholar 

  • Campbell, A., Converse, P., and Rogers, W. L. (1976). The Quality of American Life: Perceptions, Evaluations and Satisfactions, Russell Sage, New York.

    Google Scholar 

  • Cantril, H. (1965). The Pattern of Human Concerns, Rutgers University Press, New Brunswick, NJ.

    Google Scholar 

  • Caplan, R. D., Naidu, R. K., and Tripathi, R. C. (1984). Coping and defense: Constellations vs. components. Journal of Health and Social Behavior 25: 303–320.

    Google Scholar 

  • Carr-Hill, R. (1992). A second opinion. Health-related quality of life measurement--Euro style. Health Policy 20: 321–328.

    Google Scholar 

  • Cella, D. F., Dineen, K., Arnason, B., Reder, A., Webster, K. A., Karabatsos, G., Chang, C., Lloyd, S., Mo, F., Stewart, J., and Stefoski, D. (1996). Validation of the functional assessment of multiple sclerosis quality of life instrument. Neurology 47: 129–139.

    Google Scholar 

  • Chambers, L. W. (1984). The McMaster Health Index Questionnaire. In Wenger, N. K., Mattson, M. E., Furberg, C. D., and Elinson, J. (eds.), Assessment of Quality of Life in Clinical Trials of Cardiovascular Therapies, Le Jacq, New York, pp. 160–164.

    Google Scholar 

  • Cotton, S., Ruta, D. A., Garratt, A. M., and Russell, E. M. (1994). The problem of noncompletion in quality of life measurement: Making a quality of life measure more “user friendly.” (Paper available from A. M. Garratt, Department of Public Health, University of Aberdeen, Scotland.)

  • Cramer, J. A., Perrine, K., Devinsky, O., and Meador, K. (1996). A brief questionnaire to screen for quality of life in epilepsy: The QOL10. Epilepsia 37: 577–582.

    Google Scholar 

  • Cummins, R. A., McCabe, M. P., Gullone, E., and Romeo, Y. (1994). The comprehensive quality of life scale: Instrument development and psychometric evaluation on college staff and students. Educational and Psychological Measurement 54: 372–382.

    Google Scholar 

  • Dakof, G. A., and Mendelsohn, G. A. (1986). Parkinson's disease: The psychological aspects of a chronic disease. Psychological Bulletin 99: 375–387.

    Google Scholar 

  • de Boer, A. G. E. M., Wijker, W., Speelman, J. D., and de Haes, J. C. J. M. (1996). Quality of life in patients with Parkinson's disease: Development of a questionnaire. Journal of Neurology, Neurosurgery and Psychiatry 61: 70–74.

    Google Scholar 

  • Dodrill, C. B., Batzel, L. W., Queisser, H. R., and Temkin, N. R. (1980). An objective method for the assessment of psychological and social problems among epileptics. Epilepsy 21: 123–135.

    Google Scholar 

  • Dorman, P. J., Waddell, F., Slattery, J., Dennis, M., and Sandercock, P. (1997a). Are proxy assessments of health status after stroke with the EuroQoL questionnaire feasible, accurate and unbiased? Stroke 28: 1883–1887.

    Google Scholar 

  • Dorman, P. J., Waddell, F., Slattery, J., Dennis, M., and Sandercock, P. (1997b). Is the EuroQoL a valid measure of health-related quality of life after stroke? Stroke 28: 1876–1882.

    Google Scholar 

  • Dupont, S. (1995). Multiple sclerosis and sexual functioning--a review. Clinical Rehabilitation 9: 135–141.

    Google Scholar 

  • Dupuy, H. J. (1978). Self-representations of general psychological well-being of American adults. Paper presented at American Public Health Association Meeting, Los Angeles, October.

  • Edgerton, R. B. (1990). Quality of life from a longitudinal research perspective. In Schalock, R. L. (ed.), Quality of Life: Perspectives and Issues, American Association on Mental Retardation, Washington, DC, pp. 149–161.

    Google Scholar 

  • The EuroQoL Group. (1990). EuroQoL: A new facility for the measurement of health-related quality of life. Health Policy 16: 199–208.

    Google Scholar 

  • Feinstein, A. R. (1978). Clinimetric perspectives. Journal of Chronic Disease 40: 635–640.

    Google Scholar 

  • Felce, D., and Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities 16: 51–74.

    Google Scholar 

  • Ferrans, C. E., and Powers, M. J. (1985). Quality of life index: Development and psychometric properties. Advances in Nursing Science 8: 15–24.

    Google Scholar 

  • Flanagan, J. C. (1982). Measurement of quality of life: Current state of the art. Archives of Physical Medicine and Rehabilitation 63: 56–59.

    Google Scholar 

  • Galen Research. (1996). A review of the instruments available for measuring health status and quality of life in multiple sclerosis. (Paper available from S. McKenna, Enterprise House, Manchester Science Park, Lloyd Street, Manchester, England)

  • Garden, F. H. (1991). Incidence of sexual dysfunction in neurological disability. Special issue: Sexuality and neurologic disability. Sexuality and Disability 9: 39–47.

    Google Scholar 

  • Gompertz, P., Pound, P., and Ebrahim, S. (1993). The reliability of stroke outcome measures. Clinical Rehabilitation 7: 290–296.

    Google Scholar 

  • Harper, A. C., Harper, D. A., Chambers, L. W., Cino, P. M., and Singer, J. (1986). An epidemiological description of physical, social, and psychological problems in multiple sclerosis. Journal of Chronic Disease 39: 305–310.

    Google Scholar 

  • Hartshorn, J. C., and Byers, V. L. (1994). Importance of health and family variables related to quality of life in individuals with uncontrolled seizures. Journal of Neurological Nursing 26: 288–297.

    Google Scholar 

  • Hollingworth, W., MacKenzie, R., Todd, C. J., and Dixon, A. K. (1995). Measuring changes in quality of life following magnetic resonance imaging of the knee: SF-36, EuroQoL or Rosser Index? Quality of Life Research 15: 221–229.

    Google Scholar 

  • Horley, J. (1984). Life satisfaction, happiness and morale: Two problems with the use of subjective well-being indicators. Gerontologist 24: 124–127.

    Google Scholar 

  • Hunt, S. M., McKenna, S. P., McEwen, J., Williams, J., and Papp, E. (1981). The Nottingham Health Profile: Subjective health status and medical consultations. Social Science and Medicine 15: 221–229.

    Google Scholar 

  • Jacoby, A. (1992). Epilepsy and the quality of everyday life. Social Science and Medicine 34: 657–666.

    Google Scholar 

  • Jenkinson, C. (1995). Evaluating the efficacy of medical treatment: Possibilities and limitations. Social Science and Medicine 41: 1295–1401.

    Google Scholar 

  • Johansson, K., Lindgren, I., Widner, H., Wiklund, I., and Johansson, B. B. (1993). Can sensory stimulation improve the functional outcome in stroke patients? Neurology 43: 2189–2192.

    Google Scholar 

  • Jonsson, A., Dock, J., and Ravnborg, M. H. (1996). Quality of life as a measure of rehabilitation outcome in patients with multiple sclerosis. Acta Neurologica Scandinavica 93: 229–235.

    Google Scholar 

  • Joyce, C. R. B. (1994). Requirements for the assessment of individual quality of life. In McGee, H. M., and Bradley, C. (eds.), Quality of Life Following Renal Failure: Psychosocial Challenges Accompanying High Technology Medicine, Harwood Academic Publishers, Switzerland, pp. 43–54.

    Google Scholar 

  • Katz, M. M., and Lyerly, S. B. (1963). Methods for measuring adjustment and social behavior in the community. 1. Rationale, description, discriminative validity and scale development. Psychological Reports 13: 503–535.

    Google Scholar 

  • Klonoff, P. S., Snow, W. G., and Costa, L. D. (1986). Quality of life in patients 2 to 4 years after closed head injury. Neurosurgery 19: 735–743.

    Google Scholar 

  • Komaroff, A. L., Fagioli, L. R., Doolittle, T. H., Gandek, B., Gleit, M. A., Guerriero, R. T., Kornish, R. J., II, Ware, N. C., Ware, J. E., Jr., and Bates, D. W. (1996). Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. American Journal of Medicine 101: 281–290.

    Google Scholar 

  • Kwa, V. I., Limburg, M., and de Haan, R. J. (1996). The role of cognitive impairment in the quality of life after ischaemic stroke. Journal of Neurology 243: 599–604.

    Google Scholar 

  • Langfitt, J. T. (1995). Comparisons of the psychometric characteristics of three quality of life measures in intractable epilepsy. Quality of Life Research 4: 101–114.

    Google Scholar 

  • Liang, M. H., Cullen, K., and Larson, M. (1982). In search of a more perfect mousetrap (health status or quality of life instrument). Journal of Rheumatology 9: 775–779.

    Google Scholar 

  • Loew, F., and Rapin, C. H. (1994). The paradoxes of quality of life and its phenomenological approach. Journal of Palliative Care 10: 37–41.

    Google Scholar 

  • Lomas, J., Piakard, L., and Mohide, A. (1987). Patient versus clinician item generation of quality of life measures. The case of language disabled adults. Medical Care 25: 764–769.

    Google Scholar 

  • Longstreth, W. T., Nelson, L., Linde, M., and Munoz, D. (1992). Utility of the Sickness Impact Profile in Parkinson's disease. Journal of Geriatric Psychiatry and Neurology 5: 142–148.

    Google Scholar 

  • MacKenzie, R., Charlson, M., DiGioia, D., and Kelley, K. (1986). Can the Sickness Impact Profile measure change? An example of scale assessment. Journal of Chronic Diseases 39: 429–438.

    Google Scholar 

  • Maslow, A. (1954). Motivation and Personality, Harper & Row, New York.

    Google Scholar 

  • McDowell, I., and Newell, C. (1996). Measuring Health: A Guide to Rating Scales and Questionnaires (2nd ed.), Oxford University Press, New York.

    Google Scholar 

  • McGee, H. M., O'Boyle, C. A., Hickey, A., O'Malley, K., and Joyce, C. R. B. (1991). Assessing the quality of life of the individual: The SEIQoL with a healthy and a gastroenterology unit population. Psychological Medicine 21: 749–759.

    Google Scholar 

  • Nunally, J. C. (1967). Psychometric Theory, McGraw-Hill, New York.

    Google Scholar 

  • Nunally, J. C. (1978). Psychometric Theory (2nd ed.), McGraw-Hill, New York.

    Google Scholar 

  • Nydevik, I., and Hulter-Asberg, K. (1991). Subjective dysfunction after stroke. A study with Sickness Impact Profile. Scandinavian Journal of Primary Health Care 9: 271–275.

    Google Scholar 

  • O'Boyle, C. A., Browne, J., Hickey, A., McGee, H. M., and Joyce, C. R. B. (1995, June). Schedule for the evaluation of quality of life (SEIQoL): A direct weighting procedure for quality of life domains. (Paper available from the authors, Department of Psychology, Royal College of Surgeons, Ireland)

  • O'Boyle, C. A., McGee, H., Hickey, A., O'Malley, K., and Joyce, C. R. B. (1992). Individual quality of life in patients undergoing hip replacement. The Lancet 339: 1088–1091.

    Google Scholar 

  • O'Boyle, C. A., McGee, H., and Joyce, C. R. B. (1994). Quality of life: Assessing the individual. Advances in Medical Sociology 5: 159–180.

    Google Scholar 

  • Oleson, M., Heading, C., Shadick, K., and Bistodeau, J. A. (1994). Quality of life in long-stay institutions in England: Nurse and resident perceptions. Journal of Advanced Nursing 20: 23–32.

    Google Scholar 

  • Parducci, A. (1984). Value judgement: Toward a relational theory of happiness. In Eiser, J. B. (ed.), Attitudinal Judgement, Springer-Verlag, New York, pp. 3–22.

    Google Scholar 

  • Parmenter, T. R. (1994). Quality of life as a concept and measurable entity. Social Indicators Research 33: 9–46.

    Google Scholar 

  • Patrick, D. L., and Erickson, P. (1988). What constitutes quality of life? Concepts and dimensions. Quality of Life in Cardiovascular Care 4: 103–127.

    Google Scholar 

  • Pedhazur, E. J., and Schmelkin, L. (1994). Measurement, Design and Analysis: An Integrated Approach, Erlbaum, Hillsdale, NJ.

    Google Scholar 

  • Perrine, K. R. (1993). A new quality of life inventory for epilepsy patients: Interim results. Epilepsia 34(Suppl.): S28–S33.

    Google Scholar 

  • Petajan, J. H., Jack, H., Gappmaier, E., White, A. T., Spencer, M. K., et al. (1996). Impact of aerobic training on fitness and quality of life in multiple sclerosis. Annals of Neurology 39: 432–441.

    Google Scholar 

  • Peto, V., Jenkinson, C., Fitzpatrick, R., and Greenhall, R. (1995). The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Quality of Life Research 4: 241–248.

    Google Scholar 

  • Possl, J., and von Cramen, Y. D. (1996). Client's view of neuropsychological rehabilitation. Brain Injury 10: 125–132.

    Google Scholar 

  • Rai, G. S., Kelland, P., Rai, S. G. S., and Wientjes, H. J. F. M. (1995). Quality of life cards--a novel way to measure quality of life in the elderly. Archives of Gerontology and Geriatrics 21: 285–289.

    Google Scholar 

  • Roberts, R., Hemingway, H., and Marmot, M. (1997). Psychometric and clinical validity of the SF-36 Health Survey in the Whitehall 11 study. British Journal of Health Psychology 2: 285–300.

    Google Scholar 

  • Rogers, W. L., and Converse, P. E. (1976). Measures of the perceived overall quality of life. Social Indicators Research 2: 127–152.

    Google Scholar 

  • Rogerson, R. J. (1995). Environmental and health-related quality of life: Conceptual and methodological similarities. Social Science and Medicine 41: 1373–1382.

    Google Scholar 

  • Rose, K. J., Derry, P. A., Wiebe, S., and McLachlan, R. S. (1996). Determinants of health-related quality of life after temporal lobe epilepsy surgery. Quality of Life Research 5: 395–402.

    Google Scholar 

  • Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., and MacDonald, L. M. (1994). A new approach to the measurement of quality of life: The patient-generated index. Medical Care 32: 1109–1126.

    Google Scholar 

  • Schalock, R. L. (1990). Quality of life: Assessment and measurement issues [Introduction]. In Schalock, R. L. (ed.), Quality of Life: Perspectives and Issues, American Association on Mental Retardation, Washington, DC, pp. ix–xii.

    Google Scholar 

  • Schalock, R. L. (1996). The concept of quality of life and its current applications in the field of mental retardation/developmental disabilities. In Goode, D. A. (ed.), Quality of Life for Persons with Disabilities: International Perspectives and Issues, Brookline Books, Cambridge, MA, pp. 266–284.

    Google Scholar 

  • Schipper, H. (1990). Guidelines and caveats for quality of life measurement in clinical practice and research. Oncology 4: 51–57.

    Google Scholar 

  • Sneeuw, K. C., Aaronson, N. K., de Haan, R. J., and Limburg, M. (1997). Assessing quality of life after stroke. The value and limitations of proxy ratings. Stroke 28: 1541–1549.

    Google Scholar 

  • Stark, J. A., and Goldsbury, T. (1990). Quality of life from childhood to adulthood. In Schalock, R. L. (ed.), Quality of Life: Perspectives and Issues, American Association on Mental Retardation, Washington, DC, pp. 71–85.

    Google Scholar 

  • Stensman, R. (1985). Severely mobility-disabled people assess their quality of their lives. Scandinavian Journal of Rehabilitation and Medicine 17: 87–99.

    Google Scholar 

  • Stones, M. J., and Kozma, A. (1980). Issues relating to the usage and conceptualization of mental health constructs employed by gerontologists. International Journal of Aging and Human Development 11: 269–281.

    Google Scholar 

  • Stuifbergen, A. K. (1995). Health-promoting behaviors and quality of life among individuals with multiple sclerosis. Scholarly Inquiry for Nursing Practice: An International Journal 9: 31–50.

    Google Scholar 

  • Trimble, M. R., and Edwin Dobson, W. (eds.). (1994). Epilepsy and Quality of Life, Raven Press, New York.

    Google Scholar 

  • Veenhoven, R. (1991). Is happiness relative? Social Indicators Research 24: 1–34.

    Google Scholar 

  • Vickrey, B. G., Hays, R. D., Brook, R. H., and Rausch, R. (1992). Reliability and validity of the Katz Adjustment Scales in an epilepsy sample. Quality of Life Research 1: 63–72.

    Google Scholar 

  • Vickrey, B. G., Hays, R. D., Graber, J., Rausch, R., and Brook, R. H. (1992). A health-related quality of life instrument for patients evaluated for epilepsy surgery. Medical Care 30: 299–319.

    Google Scholar 

  • Vickrey, B. G., Hays, R. D., Harooni, R., Myers, L. W., and Ellison, G. W. (1995). A health-related quality of life measure for multiple sclerosis. Quality of Life Research 4: 187–206.

    Google Scholar 

  • Vickrey, B. G., Hays, R. D., Hermann, B., Bladin, P. F., and Batzel, L. W. (1993). Quality of life outcomes. In Engel, J. (ed.), Surgical Treatment of the Epilepsies (2nd ed.), Raven Press, New York, pp. 623–635.

    Google Scholar 

  • Visser, M. C., Koudstaal, P. J., Erdman, R. A., Deckers, J. W., Passchier, J., van Gijn, J., and Grobbee, D. E. (1995). Measuring quality of life in patients with myocardial infarction or stroke: A feasibility study of four questionnaires in the Netherlands. Journal of Epidemiology and Community Health 49: 513–517.

    Google Scholar 

  • Wagner, A. K., Bungay, K. M., Kosinski, M., Bromfield, E. B., and Ehrenberg, B. L. (1996). The health status of adults with epilepsy compared with that of people without chronic health conditions. Pharmacotherapy 16: 1–9.

    Google Scholar 

  • Ware, J., and Sherbourne, C. (1992). The MOS 36-item Short Form Health Survey (SF-36). Medical Care 30: 473–481.

    Google Scholar 

  • Webb, C. R., Wrigley, M., Yoels, W., and Fine, P. R. (1995). Explaining quality of life for persons with traumatic brain injuries 2 years after injury. Archives of Physical and Medical Rehabilitation 76: 1113–1119.

    Google Scholar 

  • The WHOQoL Group. (1995). The World Health Organization quality of life assessment (WHOQoL): Position paper from the World Health Organization. Social Science and Medicine 41: 1403–1409.

    Google Scholar 

  • The WHOQoL Group. (1998). The World Health Organization quality of life assessment (WHOQoL): Development and general psychometric properties. Social Science and Medicine 46: 1569–1585.

    Google Scholar 

  • Woodend, A. K., Nair, R. C., and Tang, A. S.-L. (1997). Definition of quality of life from a patient versus health care professional perspective. International Journal of Rehabilitation Research 20: 71–80.

    Google Scholar 

  • World Health Organization (WHO). (1947). Constitution of the World Health Organization, Author, Geneva, Switzerland.

    Google Scholar 

  • Zautra, A., and Goodhart, D. (1984). Quality of life indicators: A review of the literature. Community Mental Health Review 4: 2–10.

    Google Scholar 

  • Ziebland, S. (1994). Measuring changes in health status. In Jenkinson, C. (ed.), Measuring Health and Medical Outcomes, UCL Press, London, pp. 42–53.

    Google Scholar 

  • Zigmond, A., and Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica 67: 361–370.

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Rights and permissions

Reprints and permissions

About this article

Cite this article

Murrell, R. Quality of Life and Neurological Illness: A Review of the Literature. Neuropsychol Rev 9, 209–229 (1999). https://doi.org/10.1023/A:1021686606648

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1023/A:1021686606648

Navigation