Development of the Revised CAHPS Hospice Survey.

Abstract

The CAHPS Hospice Survey, a required element of the Centers for Medicare & Medicaid Services (CMS) Hospice Quality Reporting Program since 2015, is administered monthly by over 4000 hospices. In response to stakeholder input, CMS shortened and simplified the survey instrument and added content to address care preferences and cultural needs. To describe the development of the revised CAHPS Hospice Survey instrument. We conducted a plain language review and environmental scan, refined existing survey instrument wording, drafted candidate survey items addressing new topics of interest, and conducted seven rounds of cognitive interviews with a total of 59 family caregivers of hospice decedents. Cognitive interview respondents consistently interpreted "respecting [the patient's] wishes," and "listening to the things that matter most" and found these concepts relevant to their family members' hospice care experiences; in contrast, they found the phrases "cultural practices" and "choosing what to do next" confusing or unclear. The addition of "cultural beliefs" to an existing survey item regarding religious and spiritual support allowed for assessment of nonreligious traditions. Consolidation of the existing multi-item symptoms composite measure into one item resulted in the loss of important information; however, providing a clear definition of training of family caregivers enabled consolidation of the existing multi-item training composite measure into one summary item. The revised CAHPS Hospice Survey simultaneously adds new topics prioritized by stakeholders and reduces survey complexity and length.