Abstract
CONTEXT: The Centers for Medicare & Medicaid Services have elected to include a bereaved family member survey in public reporting of hospice quality data as mandated in the Affordable Care Act. However, it is not known what time point after death offers the most reliable responses. OBJECTIVES: To examine the stability of bereaved family members' survey responses when administered three, six, and nine months after hospice patient death. METHODS: Bereaved family members from six geographically diverse hospices were interviewed three, six, and nine months after patient death. All respondents completed a core survey. Those whose family member died at home, in a freestanding inpatient unit, or in a nursing home also completed a site-specific module. Stability was based on top-box scoring of each item with kappa statistics, and multivariable regression models were used to assess directionality and predictors of change. To analyze the effects of grief, we assessed response stability among respondents at least one SD from the mean change in grief between three and six months. RESULTS: We had 1532 surveys (536 three-month surveys, 529 six-month surveys, and 467 nine-month surveys) returned by 643 respondents (average age 61.7 years, 17.4% black, and 50.5% a child respondent) about hospice decedents (55.3% females, average age 78.6 years, 57.0% noncancer, and 40.0% at home). The average kappa for core items between three and nine months was 0.54 (range 0.42-0.74), 0.58 (0.41-0.69) for home-specific items, and 0.54 (0.39-0.63) for nursing home. Even among individuals demonstrating large grief changes, core items demonstrated moderate to high stability over time. CONCLUSION: Bereaved family member responses are stable between three and nine months after the death of the patient.