BACKGROUND/RATIONALE:
Improving care of the dying has become a recent national priority. Despite multiple efforts to improve the experience for dying patients, few well-established standardized outcome measures exist to assess the quality of life at the end of life, particularly ones that acknowledge explicitly the variability of patient and family perspectives.

OBJECTIVE(S):
Our primary objective is to develop and validate a clinical and research instrument to assess the quality of dying. This project consists of two primary components: 1) first, use previously collected data on the attributes of a good death to develop a multidimensional scale that assesses the quality of dying; and 2) validate the assessment tool in populations of seriously ill patients.

METHODS:
Questionnaire items were derived from focus group and national survey data that identified the importance of various attributes to the quality of dying. In phase I validation, an assessment of factor structure, we administered the instrument to equal numbers of VA and Duke University Medical Center outpatients with advanced cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and end-stage renal disease (ESRD). We assessed psychometric properties using factor analysis. In phase II validation, an assessment of reliability and convergent and divergent validity, we administered a reduced version of the questionnaire (31 items) and a battery of other scales to 200 seriously ill outpatients (100 VA, 100 Duke). To assess test-retest reliability, the study questionnaire is readministered, by phone, within one week.

FINDINGS/RESULTS:
In phase I, 200 patients completed the instrument (response rate = 85%); 74% were male, 64% were Caucasian and 34% African-American. Diagnoses included 64% cancer, 19.5% CHF, 10% ESRD and 6.5% COPD. After excluding items with >90% agreement, factor analysis yielded a final instrument with 25 items in five distinct domains (overall Cronbach alpha = 0.83). In phase II, 193 of the projected 200 patients have been enrolled and completed interviews. Initial results show strong test-retest reliability.

IMPACT:
The construction of an instrument designed to assess the quality of dying contributes to the provision of quality care for terminally ill veterans and their families. The instrument will provide an evaluation tool for VA administrators to assess the quality and effectiveness of interventions seeking to improve end of life care.

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External Links for this Project

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PUBLICATIONS:

Journal Articles

1. Steinhauser KE, Clipp EC, Tulsky JA. Evolution in measuring the quality of dying. Journal of palliative medicine. 2002 Jun 1; 5(3):407-14. [view]
2. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA : the journal of the American Medical Association. 2000 Nov 15; 284(19):2476-82. [view]
3. Steinhauser KE, Bosworth HB, Clipp EC, McNeilly M, Christakis NA, Parker J, Tulsky JA. Initial assessment of a new instrument to measure quality of life at the end of life. Journal of palliative medicine. 2002 Dec 1; 5(6):829-41. [view]
4. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, Grambow S, Parker J, Tulsky JA. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. Journal of pain and symptom management. 2001 Sep 1; 22(3):727-37. [view]

Book Chapters

1. Tulsky JA, Arnold RM. Communication at the end of life. In: Berger AM, Portenoy RK, Weissman DE, editors. Principles and Practice of Palliative Care and Supportive Oncology, 2nd Edition. Philadelphia, PA: Lipincott Williams & Wilkins; 2002. 673-684 p. [view]
2. Tulsky JA. Patient 61. A 48 year-old man with metastatic cancer who has not yet recognized the terminal nature of his disease. In: Heffner JE, Cabell CH, editors. Palliative and End-of-Life Pearls. Philadelphia, PA: Hanley & Belfus; 2002. 192-194 p. [view]
3. Tulsky JA, Ciampa R, Rosen EJ. Responding to legal requests for physician-assisted suicide. In: Snyder L, Quill TE, editors. Physicians Guide to End-of-Life Care. Philadelphia, PA: ACP-ASIM; 2001. [view]

Center Products

1. Steinhauser KE, Clipp EC, Christakis NA, McNeilly M, McIntyre L, Tulsky JA. Visions of a good death: What patients, families and health care providers consider important at the end of life (Abstract). 2002 Jun 1. 64 (Suppl). [view]

Conference Presentations

1. Tulsky JA. Assessment of a new instrument to measure quality of life at the end of life. Paper presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2002 Feb 1; Palm Springs, CA. [view]
2. Steinhauser KE, Clipp EC, Bosworth HB, McNeilly M, Christakis NA, Voils CI, Tulsky JA. Measuring Quality of Life at the End of Life: Valediction of the QUAL-E. Paper presented at: VA HSR&D National Meeting; 2004 Mar 1; Washington, DC. [view]
3. Steinhauser KE, Bosworth HB, Clipp EC, McNeilly M, Christakis NA, Voils CI, Tulsky JA. Measuring Quality of Life at the End of Life: Validation of the QUAL-E. Paper presented at: Gerontological Society of America Annual Scientific Meeting; 2003 Nov 1; San Diego, CA. [view]
4. Steinhauser KE, Clipp EC, Christakis NA, McNeilly M, McIntyre L, Tulsky JA. Preparing for the end of life: Preferences of patients, families, and health care providers. Presented at: Gerontological Society of America Annual Scientific Meeting; 2001 Nov 1; Chicago, IL. [view]

DRA: Aging, Older Veterans' Health and Care, Health Systems
DRE: none
Keywords: End-of-life, Patient preferences
MeSH Terms: End-Of-Life, Outcome Assessment (Health Care)