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Research Questions

  1. Does the Receiving Desired Help for Pain performance measure reliably and accurately capture whether patients feel that their preferences and needs have been acknowledged (and to what extent)?
  2. Is the Receiving Desired Help for Pain 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 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.

Key Findings

  • About 80 percent of respondents indicated they definitely had pain, wanted help for that pain, and received help for that pain. Although responses skewed toward the high end of the scale, variability across programs was also high.
  • Mixed-effects models showed a reasonable level of measure reliability, with some sensitivity to small programs. A minimum average sample size of 49 participants would be required for a reliable measure.
  • Using a survey vendor to administer the survey would minimize burden to programs. Most programs have prior experience using such vendors.
  • Although program interviewees agreed on the value of asking patients to report on their experiences of receiving help for their pain, many raised concerns regarding the Receiving Desired Help for Pain measure, including unrealistic patient expectations (particularly regarding substance use) and survey bias for patients who are unhappy with their pain management.
  • For quality assessment and improvement efforts, program interviewees discussed setting realistic goals, managing expectations through educational efforts, and setting boundaries regarding opioid use.
  • Most programs had little to no experience with providing services over telehealth before the pandemic. Benefits of telehealth included enhanced personal connections (including with family members) 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 (1) generally feeling that their palliative care providers did their best to address their pain in most cases and (2) higher satisfaction with palliative care providers than providers in the general health care system.

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.

This report is part of the RAND research report series. RAND reports present research findings and objective analysis that address the challenges facing the public and private sectors. All RAND reports undergo rigorous peer review to ensure high standards for research quality and objectivity.

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