Palliative care has expanded rapidly in the past 20 years, especially in the ambulatory (office) setting, and there is growing consensus regarding the need to systematically measure and incentivize high-quality care. The Centers for Medicare & Medicaid Services entered a cooperative agreement with the American Academy of Hospice and Palliative Medicine (AAHPM) as part of the Medicare Access and CHIP Reauthorization Act of 2015 to develop two patient-reported measures of ambulatory palliative care experience: Feeling Heard and Understood and Receiving Desired Help for Pain. Under contract to AAHPM, RAND Health Care researchers developed and tested both measures over a three-year project period. Researcher efforts included identifying, developing, testing, and validating appropriate patient-reported data elements for each measure; developing and fielding a survey instrument to collect necessary data in a national beta field test with 44 ambulatory palliative care programs; and collecting and analyzing data about measure reliability and validity to establish measure performance and final specifications. Further, the authors elicited provider and program perspectives on the use and value of the performance measures and their implementation and elicited the perspectives of patients from racial and ethnic minorities to understand their experience of ambulatory palliative care and optimal approaches to measurement. In this study, the authors present results from their test of the Receiving Desired Help for Pain performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.
Keywords: Health Care Quality Measurement; Palliative Care; Patient Experience; Survey Research Methodology; Telemedicine.
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