• 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, and Sangeeta C Ahluwalia.
• Department of Medicine (A.W.), University of California, Los Angeles, California; VA Greater Los Angeles Health System (A.W.), Los Angeles, California; RAND Health Care (A.W., J.H., S.A.), Santa Monica, California. Electronic address: awalling@mednet.ucla.edu.
• J Pain Symptom Manage. 2023 Feb 1; 65 (2): 8710087-100.

ContextWhile 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.ObjectivesThe 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.MethodsWe 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.ResultsTo 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.ConclusionThese 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.Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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