Instruments

———— Quality of Communication (QOC) ————
The QOC is an instrument for assessing the quality of patient-doctor communication.  Please note that the first version of the instrument is presented here; the next version of this instrument is currently under development.  Spanish and Vietnamese translations of this instrument are also available from the researchers.

Reference:  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. (PDF, 113 KB)

 

———— Quality of Dying and Death (QODD) ————
The QODD is an instrument for assessing the quality of dying and death.

I.  The first version of this instrument is designed to be interviewer-administered to a significant other of a patient who died in an out-patient or hospice setting.  Instructions are included below.  A Spanish translation of this instrument is also available from the researchers.



References: 
*Patrick DL, Engelberg R, Curtis JR. Evaluating the quality of dying and death. J Pain Symptom Manage. 2001; Sep 22(3):717-26. (PDF, 221 KB)
*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.  (PDF, 101 KB)
*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.  (PDF, 201 KB)
*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. (PDF, 208 KB)
*Curtis JR, Downey L, Engelberg RA. The quality of dying and death: is it ready for use as an outcome measure? Chest. 2013 Feb 1;143(2):289-91. doi: 10.1378/chest.12-1941. (PDF, 442 KB)

 

II.  The second version of this instrument has been adapted for use by nurses in the ICU.  This version contains 14 items.

Reference:
Treece PD, Engelberg RA, Crowley L, Chan JD, Rubenfeld GD, Steinberg KP, Curtis JR. Evaluation of a standardized order form for the withdrawal of life support in the intensive care unit. Crit Care Med. 2004; 32:1141-1148. (PDF, 478 KB)

 

III.  A later version of this instrument is designed for self-administration by a significant other (family member and/or friend) of a patient who died in a hospital or ICU setting.  A Spanish translation of this instrument is also available from the researchers.


Reference:
*
Glavan BJ, Engelberg RA, Downey L, Curtis JR.  Using the medical record to evaluate the quality of end-of-life care in the intensive care unit. Crit Care Med. 2008 Apr;36(4):1138-46. (PDF, 342 KB)
*Curtis JR, Downey L, Engelberg RA. The quality of dying and death: is it ready for use as an outcome measure? Chest. 2013 Feb 1;143(2):289-91. doi: 10.1378/chest.12-1941. (PDF, 442 KB)

 

IV.  A similar, later version of this instrument is designed for self-administration by a healthcare professional who cared for a patient who died in a hospital or ICU setting.  A Spanish translation of this instrument is also available from the researchers.


 

———— Quality of End-of-Life Care (QEOLC) ————
The QEOLC is an instrument in which respondents rate a clinician’s skill at providing high quality end-of-life care.

I.  The common solution questionnaires provided here are composed of 10 items and may be used with patients, families/friends, and clinicians who have been asked to evaluate the quality of end-of-life care.  The 10 items were selected from a larger set of items using factor analytic approaches, and represent all five domains that we had identified previously as important to the quality end-of-life care.  The items are the same for all respondent-types, making it easier to compare scores across respondents. The items provide a single score, derived as a simple mean of item values.

Reference:  Engelberg RA, Downey L, Wenrich MD, Carline JD, Silvestri GA, Dotolo D, Nielsen EL, Curtis JR.  Measuring the quality of end-of-life care. J Pain Symptom Manage. 2010 Jun;39(6):951-71. (PDF, 323 KB)

 

II.  Like the common solution questionnaires, the participant-specific questionnaires were developed using factor analytic approaches.  However, rather than developing a single limited set of items demonstrating good fit for all respondent types (i.e., patient, family, clinician), the participant-specific questionnaires were based on finding the best fit for each respondent-type.  As a result, the items vary both in number and type for the participant-specific
questionnaires.  These versions may be preferable when the focus is on evaluating patient, family and clinician experiences separately and in greater depth than that afforded by the smaller set of common solution items.

The following set of 11 items was validated for a patient respondent to report on the quality of care provide by the patient’s clinician.

The following set of 22 items was validated for a family member respondent to report on the quality of care provide by his or her loved one’s clinician.

The following set of 11 items was validated for a nurse respondent to report on the quality of care provide by a patient’s clinician.

Reference:  Engelberg RA, Downey L, Wenrich MD, Carline JD, Silvestri GA, Dotolo D, Nielsen EL, Curtis JR.  Measuring the quality of end-of-life care. J Pain Symptom Manage. 2010 Jun;39(6):951-71. (PDF, 323 KB)

 

———— Assessments of Palliative Care ————
These instruments were developed by the Robert Wood Johnson Foundation’s Critical Care End-of-Life Peer Work Group


References: 
Clarke EB, Luce JM, Curtis JR, Levy M, Nelson J, Solomon MZ, for the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup Members.  A content analysis of forms, guidelines, and other materials documenting end-of-life care in intensive care units. J Crit Care. 2004; 19:108-17.  (PDF, 92 KB)
Ho LA, Engelberg RA, Curtis JR, Nelson J, Luce J, Ray DE, Levy MM.  Comparing clinician ratings of the quality of palliative care in the intensive care unit. Crit Care Med. 2011 May;39(5):975-83. Epub 2011 Jan 28. (PDF, 561 KB)

 

———— Additional Instruments for Healthcare Team Members (Nursing, Social Work, Spiritual Care) ————




NACF Reference: 
Downey L, Engelberg RA, Shannon SE, Curtis JR. Measuring intensive care nurses’ perspectives on family-centered end-of-life care: evaluation of three questionnaires. Am J Crit Care. 2006 Nov;15(6):568-79. (PDF, 117KB)