Stakeholders such as palliative care patients and their providers and health systems lack actionable measures to assess performance and guide improvement efforts in palliative care. In this report, the authors describe the results of their national beta field test for a performance measure designed to assess the extent to which patients who used ambulatory palliative care felt heard and understood by their palliative care provider and team.

Cover: MACRA Palliative Care Quality Measure Development—Testing Summary Report
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MACRA Palliative Care Quality Measure Development—Testing Summary Report

Measure Name: Feeling Heard and Understood

by Sangeeta C. Ahluwalia, Brian G. Vegetabile, Maria Orlando Edelen, Claude Messan Setodji, Anthony Rodriguez, Adam Scherling, Jessica Phillips, Carrie M. Farmer, Jordan M. Harrison, Julia Bandini, et al.

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Research Questions

  1. Does the Feeling Heard and Understood performance measure reliably and accurately capture whether patients feel that their preferences and needs have been acknowledged (and to what extent)?
  2. Is the Feeling Heard and Understood performance measure practical and useful for the purpose of quality improvement among palliative care programs?

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 report, the authors present results from their test of the Feeling Heard and Understood performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.

Key Findings

  • Survey participants tended to respond at the high end of the response scale. Variability in scores across programs, however, was high.
  • Only one risk adjustment variable (survey mode) was found to have significant associations with both the measure and the programs, underscoring the importance of adjustment for survey mode.
  • Mixed-effects models showed a reasonable level of measure reliability, with some sensitivity to small programs. A minimum average sample size of 37 participants would be required for a reliable measure. Adjusting for survey mode and proxy survey completion, the authors found that measure performance adjusted slightly downward for phone surveys and slightly upward for web surveys.
  • The Feeling Heard and Understood performance measure was significantly and positively associated with the Consumer Assessment of Healthcare Providers and Systems (CAHPS) communication measure, supporting the convergent validity of the Feeling Heard and Understood performance measure.
  • Using a survey vendor to administer the survey would minimize burden to programs. Most programs have prior experience using such vendors.
  • Most programs had little to no experience with providing services over telehealth before the pandemic. Benefits of telehealth included enhanced personal connections and medication reconciliation; challenges included loss of human touch with patients.
  • Patients and family members who identify as Black or African American or as Asian who were interviewed for their perceptions of palliative care indicated generally feeling heard and understood by their palliative care providers and higher satisfaction with palliative care providers than providers in the general health care system.

Table of Contents

  • Chapter One

    Background and Overview

  • Chapter Two

    Patient Population and Sampling

  • Chapter Three

    Critical Data Element Testing

  • Chapter Four

    Performance Measure Testing

  • Chapter Five

    Feasibility and Implementation Considerations

  • Chapter Six

    Performance Measure Implementation and Future Considerations

  • Appendix A

    National Beta Field Test Survey Instrument

  • Appendix B

    Methods and Analytic Procedures

Research conducted by

This research was funded by the Centers for Medicare & Medicaid Services and carried out within the Quality Measurement and Improvement Program in RAND Health Care.

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