Palliative & Supportive Care



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


KAREN E.  STEINHAUSER  Ph.D. a1 a2 a3 a4 a5 c1 , ELIZABETH C.  CLIPP  R.N., M.S., Ph.D. a4 a5 a6 a7 a8 , HAYDEN B.  BOSWORTH  Ph.D. a2 a3 a4 , MAYA  MCNEILLY  Ph.D. a4 a9 , NICHOLAS A.  CHRISTAKIS  M.D., Ph.D., MPH a10 , CORRINE I.  VOILS  Ph.D. a2 and JAMES A.  TULSKY  M.D. a1 a2 a3 a4 a5
a1 Program on the Medical Encounter and Palliative Care, Durham VA Medical Center, Durham, North Carolina
a2 The Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, North Carolina
a3 The Department of Medicine, Duke University, Durham, North Carolina
a4 The Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina
a5 The Institute on Care at the End of Life, Duke University, Durham, North Carolina
a6 The Geriatric Research Education and Clinical Center, Durham VA Medical Center, Durham, North Carolina
a7 The Division of Geriatrics, Duke University, Durham, North Carolina
a8 School of Nursing, Duke University, Durham, North Carolina
a9 The Institute for Multiculturalism, Durham, North Carolina
a10 The Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts

Article author query
steinhauser ke   [PubMed][Google Scholar] 
clipp ec   [PubMed][Google Scholar] 
bosworth hb   [PubMed][Google Scholar] 
mcneilly m   [PubMed][Google Scholar] 
christakis na   [PubMed][Google Scholar] 
voils ci   [PubMed][Google Scholar] 
tulsky ja   [PubMed][Google Scholar] 

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 [less-than-or-equal]20%, chronic obstructive pulmonary disease with FEV1 [less-than-or-equal] 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 ([alpha] = 0.80), symptoms impact ([alpha] = 0.87), relationship with health care provider ([alpha] = 0.71), and preparation for end of life ([alpha] = 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.

(Received March 29 2004)
(Accepted June 14 2004)


Key Words: Palliative care; End of life; Quality of life; Measurement.

Correspondence:
c1 Corresponding author: Karen E. Steinhauser, VA Medical Center (152), 508 Fulton Street, Durham, NC 27705, USA. E-mail: karen.steinhauser@duke.edu