Patient-Reported Quality Measures for Palliative Care: The Time is now

Anne M. Walling, Katherine Ast, Jordan M. Harrison, Sydney M. Dy, Mary Ersek, Laura C. Hanson, Arif H. Kamal, Christine S. Ritchie, Joan M. Teno, Joseph D. Rotella, Vyjeyanthi S. Periyakoil, Sangeeta C. Ahluwalia

Research output: Contribution to journalArticlepeer-review

7 Scopus citations


Context: While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. Objectives: The research team, consisting of quality measure and survey developers, psychometricians, and palliative care clinicians, used established state-of-the art methods for developing and testing patient-reported measures. Methods: We applied a patient-centered, patient-engaged approach throughout the development and testing process. This sequential process included 1) an information gathering phase; 2) a pre-testing phase; 3) a testing phase; and 4) an endorsement phase. Results: To fill quality measure gaps identified during the information gathering phase, we selected two draft measures (“Feeling Heard and Understood” and “Receiving Desired Help for Pain”) for testing with patients receiving palliative care in clinic-based settings. In the pre-testing phase, we used an iterative process of cognitive interviews to refine draft items and corresponding response options for the proposed measures. The alpha pilot test supported establishment of protocols for the national beta field test. Measures met conventional criteria for reliability, had strong face and construct validity, and there was diversity in program level scores. The measures received National Quality Forum (NQF) endorsement. Conclusion: These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.

Original languageEnglish (US)
Pages (from-to)87-100
Number of pages14
JournalJournal of Pain and Symptom Management
Issue number2
StatePublished - Feb 2023
Externally publishedYes


  • palliative care
  • patient-reported
  • quality measures

ASJC Scopus subject areas

  • General Nursing
  • Clinical Neurology
  • Anesthesiology and Pain Medicine


Dive into the research topics of 'Patient-Reported Quality Measures for Palliative Care: The Time is now'. Together they form a unique fingerprint.

Cite this