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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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