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The Centers for Medicare & Medicaid Services (CMS) contracted with the American Academy of Hospice and Palliative Medicine (AAHPM) and their partners the National Coalition for Hospice and Palliative Care and RAND Health Care to develop two patient-reported measures of palliative care experience in the domains of symptoms and communication. The measures under development are intended to assess the extent to which patients receiving outpatient clinic-based palliative care obtained the help they wanted for their symptom(s) and the extent to which they felt heard and understood by their palliative care provider and team.

This report summarizes findings from a small pilot study (the "alpha test") which was conducted to evaluate the feasibility of data collection processes and refine the testing plan in advance of a larger national field test (the "beta test"). Alpha testing occurred between August and October 2019. Surveys were fielded to 300 randomly selected patients from five palliative care programs using a mixed-mode survey administration. This yielded 120 completed surveys, a 40 percent response rate. Aggregate patient feedback was returned to the programs through individualized summary reports. Follow-up interviews were conducted with participating programs to gather staff perspectives on the feasibility of data collection and the usefulness of the summary report.

Overall, findings supported the planned procedures for the beta test. Programs were positive about their participation and found the feedback obtained through the survey to be helpful. Lessons learned in the alpha test resulted in adjustments to the recruitment process, patient identification and eligibility, survey administration procedures, and survey data elements. The alpha test also provided preliminary evidence of measure reliability and validity.

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This research was funded by the Centers for Medicare & Medicaid Services and conducted by RAND Health Care.

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