The CARE survey is mortality follow back survey that is administered to the bereaved family members of adult persons (age 18 and older) who died of a chronic progressive illness receiving services for at least 48 hours from a home health agency, nursing homes, hospice, or acute care hospital. The survey measures perceptions of the quality of care either in terms of unmet needs, family reports of concerns with the quality of care, and overall rating of the quality of care. The time frame is the last 2 days of life up to last week of life spent in a hospice, home health agency, hospital, or nursing home.
The survey is based on structured literature review,(1) cognitive testing,(2) pre-test,(2) and national survey of the quality of end of life care.(3) The conceptual model is patient focused, family centered care(1) that posits that high quality care at the end of life is obtained when health care institutions: 1) provide the desired level of symptom palliation and emotional support; 2) treat the patient with respect; 3) promote shared decision making; 4) attend to the needs of caregivers for information and skills in providing care for the patient; 5) provide emotional support to the family before and after the patient’s death; and 6) coordinates care across settings of care and health care providers.
We are asking NQF approval for a single composite derived from the survey items that is presented as single score that varies from 0 to 100. This score indicates an institution quality of care end of life care in the last week of life.
This is the “parent” survey of the Family Evaluation of Hospice Care Survey (4-7) that my colleagues and I have collaborated with the National Hospice and Palliative Care Organization to create a self-administered survey that is used widely by hospices in the USA and other nations. With the proposed development of accountable care organizations and other potential innovations in health care financing, we recognized the need for an instrument that would allow the comparisons across place of care when there is one entity coordinating and/or financing the care for population of decedents. We have decided to submit the telephone based survey for NQF consideration based on the void of validated measures to capture consumer perceptions (i.e, bereaved family members) of the quality of care at the end of life across place of care. This submission is not meant to be competitive with the existing NQF endorsed Family Evaluation of Hospice Care survey.
This new proposed measure for NQF consideration consists of the survey which has six domains and the new creation of 0-100 composite score that is composed of 14 of 17 core items.
1. Teno JM, Casey VA, Welch L, Edgman-Levitan S. Patient-Focused, Family-Centered End-of-Life Medical Care: Views of the Guidelines and Bereaved Family Members. J Pain Symptom Manage-Special Section on Measuring Quality of Care at Life´s End II. 2001 Sep 2001;22(3):738-751.
2. Teno JM, Clarridge B, Casey V, Edgman-Levitan S, Fowler J. Validation of Toolkit After-Death Bereaved Family Member Interview. J Pain Symptom Manage. 2001 Sep 2001;22(3):752-758.
3. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004 Jan 7 2004;291(1):88-93.
4. Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family members´ evaluation of hospice care: what factors influence overall satisfaction with services? J Pain Symptom Manage. 2008 Apr 2008;35(4):365-371.
5. Mitchell SL, Kiely DK, Miller SC, Connor SR, Spence C, Teno JM. Hospice care for patients with dementia. J Pain Symptom Manage. 2007 Jul 2007;34(1):7-16.
6. Rhodes RL, Teno JM, Connor SR. African American bereaved family members´ perceptions of the quality of hospice care: lessened disparities, but opportunities to improve remain. J Pain Symptom Manage. 2007 Nov 2007;34(5):472-479.
7. Connor SR, Teno J, Spence C, Smith N. Family Evaluation of Hospice Care: Results from Voluntary Submission of Data Via Website. J Pain Symptom Manage. 2005 Jul 2005;30(1):9-17.
- Measure TypeElectronic Clinical Quality Measure (eCQM)Level Of AnalysisCare SettingNumerator
The numerator of the total of bereaved family member reports of concerns with the quality of care in the last 2-7 days of life at that institutional setting. Respondent reports of concerns with the quality of care, their self-efficacy in basic tasks of caregiving, or unmet needs that indicate an opportunity to improved end of life care provided by either a nursing home, hospital, hospice, or home health agency.
DenominatorNon-traumatic deaths and deaths from chronic progressive illnesses based on ICD 9/10 codes are included. A list will be provided as technical appendix to the proposed survey. Note the survey is for only persons that died with the following services or location of care: nursing home, hospital, hospice, or home health agency
ExclusionsWe excluded deaths due to accidents, trauma, during surgery, lethal injection, acute overwhelming infections, and from complications of pregnancy. If there are more than 3 items missing, than a composite score will not be calculated.
Testing Data Sources
- Measure StructureClinical Condition Topic AreaTarget PopulationNational Quality Strategy PrioritiesPerson- and Family-Centered Care
- Risk Adjustment
- Current or planned use(s)Current Use(s)
- Most Recent Endorsement ActivityMeasure Retired and Endorsement Removed Person and Family-Centered Care Endorsement Maintenance ProjectInitial EndorsementEndorsement StatusLast UpdatedRemoval Date
- Steward Organization EmailSteward Organization Copyright
The copyright holder is Brown University which make the instrument available for use free of charge with the provision it is not modified or sold.