Hospice Study

Measuring the Quality of Dying and Death in Persons Receiving Hospice Care
Principal Investigator:  JR Curtis
Research Grant:  Robert Wood Johnson Foundation, August 1999 to July 2002

The objectives of this project were:  1) to test the measurement validity and domain structure of a questionnaire administered to significant others and hospice providers that measures the perceived quality of dying and death (QODD) of persons in hospice care; 2) to test the reproducibility and internal consistency reliability of the after-death QODD questionnaire; 3) to examine the validity of the after-death QODD questionnaire using patients’ pre-death interviews, significant others’ pre and post death interviews, hospice providers’ assessments, and chart reviews; and 4) to compare the validity of an after-death QODD questionnaire to a modified after-death QODD questionnaire that is modified using the preferences about dying and death as assessed by the patient prior to death.


Publications from this study include:

Downey L, Curtis JR, Lafferty WE, Herting JR, Engelberg RA. The quality of dying and death questionnaire (QODD): empirical domains and theoretical perspectives. J Pain Symptom Manage. 2010 Jan;39(1):9-22. Epub 2009 Sep 25.

Downey L, Engelberg RA, Curtis JR, Lafferty WE, Patrick DL. Shared priorities for the end-of-life period.  J Pain Symptom Manage. 2009 Feb;37(2):175-88. Epub 2008 Aug 22.

Engelberg RA, Downey L, Curtis JR. Psychometric characteristics of a quality of communication questionnaire assessing communication about end-of-life care. J Palliat Med. 2006 Oct;9(5):1086-98.

Engelberg RA, Patrick DL, Curtis JR.  Correspondence between patients’ preferences and surrogates’ understandings for dying and death. J Pain Symptom Manage. 2005 Dec;30(6):498-509.

Patrick DL, Curtis JR, Engelberg RA, Nielsen EL, McCown EB.  Measuring and improving the quality of dying and death. Ann Intern Med. 2003 Sep2; 139 (5 pt 2): 410-5.