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Measuring quality of life at the end of life: Validation of the QUAL-E

Published online by Cambridge University Press:  01 March 2004

KAREN E. STEINHAUSER ,
ELIZABETH C. CLIPP ,
HAYDEN B. BOSWORTH ,
MAYA MCNEILLY ,
NICHOLAS A. CHRISTAKIS ,
CORRINE I. VOILS  and
JAMES A. TULSKY
KAREN E. STEINHAUSER
Affiliation:
Program on the Medical Encounter and Palliative Care, Durham VA Medical Center, Durham, North Carolina The Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina The Department of Medicine, Duke University, Durham, North Carolina The Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina The Institute on Care at the End of Life, Duke University, Durham, North Carolina
ELIZABETH C. CLIPP
Affiliation:
The Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina The Institute on Care at the End of Life, Duke University, Durham, North Carolina The Geriatric Research Education and Clinical Center, Durham VA Medical Center, Durham, North Carolina The Division of Geriatrics, Duke University, Durham, North Carolina School of Nursing, Duke University, Durham, North Carolina
HAYDEN B. BOSWORTH
Affiliation:
The Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina The Department of Medicine, Duke University, Durham, North Carolina The Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina
MAYA MCNEILLY
Affiliation:
The Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina The Institute for Multiculturalism, Durham, North Carolina
NICHOLAS A. CHRISTAKIS
Affiliation:
The Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts
CORRINE I. VOILS
Affiliation:
The Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina
JAMES A. TULSKY
Affiliation:
Program on the Medical Encounter and Palliative Care, Durham VA Medical Center, Durham, North Carolina The Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina The Department of Medicine, Duke University, Durham, North Carolina The Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina The Institute on Care at the End of Life, Duke University, Durham, North Carolina
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Abstract

Objectives: To validate the QUAL-E, a new measure of quality of life at the end of life.

Methods: We conducted a cross-sectional study to assess the instrument's psychometric properties, including the QUAL-E's associations with existing measures, evaluation of robustness across diverse sample groups, and stability over time. The study was conducted at the VA and Duke University Medical Centers, Durham, North Carolina, in 248 patients with stage IV cancer, congestive heart failure with ejection fraction ≤20%, chronic obstructive pulmonary disease with FEV1 ≤ 1.0 l, or dialysis-dependent end stage renal disease. The main outcome measures included QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales.

Results: QUAL-E analyses confirmed a four-domain structure (25 items): life completion (α = 0.80), symptoms impact (α = 0.87), relationship with health care provider (α = 0.71), and preparation for end of life (α = 0.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test–retest reliability assessment showed stable scores over a 1-week period.

Significance of results: The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.

Keywords

Palliative careEnd of lifeQuality of lifeMeasurement
Type
Research Article
Information
Palliative & Supportive Care , Volume 2 , Issue 1 , March 2004 , pp. 3 - 14
Copyright
© 2004 Cambridge University Press

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References

REFERENCES

Aaronson, N.K., Ahmedzai, S., Bergman, & B., et al. (1993). The European organization for research and treatment of cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85, 365–376.Google Scholar
Ahmedzai, S., Arrasas, J., Eisemann, & M., et al. (1994). Development of an appropriate quality of life measure for palliative care. Quality of Life Research, 3, 57–64.Google Scholar
Bentler, P. (1990). Comparative fit indices in structural models. Psychological Bulletin, 107, 238–246.Google Scholar
Bentler, P. & Bonett, D. (1980). Significance tests and goodness-of-fit in the analysis of covariance structures. Psychological Bulletin, 88, 588–606.Google Scholar
Brady, M.J. & Cella, D. (1999). Assessing quality of life in palliative care. Cancer Treatment Research, 100, 203–216.Google Scholar
Browne, M. & Cudeck, R. (1993). Alternative Ways of Assessing Model Fit. Newbury Park, CA: Sage.
Byock, I. (1995). Missoula-VITAS Quality of Life Index: Version 25S. Missoula, MT: VITAS Healthcare Corporation.
Byock, I. & Merriman, M. (1998). Measuring quality of life for patients with terminal illness: The Missoula-VITAS quality of life index. Palliative Medicine, 12, 231–244.Google Scholar
Cella, D.F., Tulsky, D.S., Gray, & G., et al. (1993). The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. Journal of Clinical Oncology, 11, 570–579.Google Scholar
Cohen, S. & Leis, A. (2002). What determines the quality of life in terminally ill cancer patients from their own perspectives? Journal of Palliative Care, 18, 48–58.Google Scholar
Cohen, S. & Mount, B. (1992). Quality of life assessment in terminal illness: Defining and measuring subjective well-being in the dying. Journal of Palliative Care, 8, 40–45.Google Scholar
Cohen, S., Mount, B., Strobel, & M.G., et al. (1995). The McGill Quality of Life Questionnaire: A measure of quality of life for people with advanced disease. A preliminary study of validity and acceptability. Palliative Medicine, 9, 207–219.Google Scholar
Council on Scientific Affairs. (1996). Good care of the dying patient. JAMA, 275, 464–468.Google Scholar
Curtis, J.R., Patrick, D.L., Engelberg, & R.A., et al. (2002). A measure of the quality of dying and death: Initial validation. Journal of Pain Symptom Management, 24, 17–31.Google Scholar
Erikson, E. (1982). The Life Cycle Completed: A Review. New York: Norton.
Field, M. & Cassel, C. (1997). Approaching Death: Improving Care at the End of Life. Washington, DC: Institute of Medicine.
Fleiss, J. (1981). Statistical Methods for Rates and Proportions. New York: John Willey & Sons.
Gibson, R. (1998). The Robert Wood Johnson grantmaking strategies to improve care at the end of life. Journal of Palliative Medicine, 1, 415–417.Google Scholar
Greisinger, A.J., Lorimor, R.J., Aday, & L.A., et al. (1997). Terminally ill cancer patients. Their most important concerns. Cancer Practice, 5, 147–154.Google Scholar
Joreskog, K. & Sorbom, D. (1981). Lisrel V: Analysis of Linear Structural Relationships by the Method of Maximum Likelihood. Chicago: National Educational Resources.
Kaplan, J.R., Pettersson, K., Manuck, & S.B., et al. (1991). Role of sympathoadrenal medullary activation in the initiation and progression of atherosclerosis. [Review] [61 refs]. Circulation, 84(6 Suppl), VI23–32.Google Scholar
Kaplan, S., Greenfield, S., Rogers, & W., et al. (1995). Patient and visit characteristics related to physicians' participatory decision-making style: Results from the Medical Outcomes Study. Medical Care, 33, 1176–1187.Google Scholar
Kline, P. (1986). A Handbook of Test Construction. London: Metheun.
Lev, E.L. (1991). Dealing with loss: Concerns of patients and families in a hospice setting. Clinical Nurse Specialist, 5, 87–93.Google Scholar
Lunney, J., Foley, K., Smith, & T.J., et al. (2003). Describing Death in America: What We Need to Know. Washington, DC: Institute of Medicine, National Research Council of the National Academies.
Lynn, J. (1997). Measuring quality of care at the end of life: A statement of principles. Journal of the American Geriatrics Society, 45, 526–527.Google Scholar
O'Boyle, C., McGee, H., Hickey, & A., et al. (1995). A Schedule for the Evaluation of Individual Quality of Life (SEIQoL-DW): A Direct Weighting Procedure for Quality of Life Domains (SEIQoL-DW). Dublin: Royal College of Surgeons in Ireland, Department of Psychology.
Padilla, G., Presant, C., Grant, & M., et al. (1983). Quality of Life Index for patients with cancer. Research in Nursing & Health, 6, 117–126.Google Scholar
Pfeiffer, E. (1975). A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. Journal of the American Geriatrics Society, 23, 433–441.Google Scholar
Singer, P., Martin, D., & Merrijoy, K. (1999). Quality end-of-life care: Patients' perspectives. JAMA, 281, 163–168.Google Scholar
Staton, J., Shuy, R., & Byock, I. (2001). A Few Months to Live: Different Paths to Life's End. Washington, DC: Georgetown University Press.
Steiger, J. & Lind, J. (1980). Statistically Based Tests for the Number of Common Factors. Paper presented at the Psychometric Society Annual Meeting, Iowa City.
Steinhauser, K., Bosworth, H., Clipp, & E., et al. (2002). An initial assessment of a new instrument to measure quality at the end of life (QUAL-E). Journal of Palliative Medicine, 5, 829–841.Google Scholar
Steinhauser, K., Christakis, N., Clipp, & E., et al. (2000a). Factors considered important at the end of life by patients, family, physicians and other care providers. JAMA, 284, 2476–2482.Google Scholar
Steinhauser, K., Clipp, E., McNeilly, & M., et al. (2000b). In search of a good death: Observations of patients, families and health care providers. Annals of Internal Medicine, 132, 825–832.Google Scholar
Stewart, A.L., Teno, J., Patrick, & D.L., et al. (1999). The concept of quality of life of dying persons in the context of health care. Journal of Pain and Symptom Management, 17, 93–108.Google Scholar
Streiner, D. & Norman, G. (1995). Health Measurement Scales: A Practical Guide to Their Development and Use, 2nd ed. Oxford: Oxford University Press.
Teno, J. & Landrum, K.E. (1996). Toolkit of Instruments to Measure End of Life Care: Briefing Book for the Conference on Measuring Care at the End of Life. Washington, DC: Center to Improve Care of the Dying.
Tulsky, D.S. (1990). An introduction to test theory. Oncology, 4, 43–48; discussion 69–70.Google Scholar
Waldron, D., O'Boyle, C.A., Kearney, & M., et al. (1999). Quality-of-life measurement in advanced cancer: Assessing the individual. Journal of Clinical Oncology, 17, 3603–3611.Google Scholar