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Research Questions

  1. What are the options for developing, testing, and implementing patient-reported experience measures for patients in outpatient, clinic-based settings?
  2. What are the options for ensuring that proposed measures are applicable to patients with serious illness receiving palliative care, and to their families?

Palliative care has expanded rapidly in recent years. Hence, there has been a growing awareness of and emphasis on the importance of developing quality measures specific to palliative care. This report describes information-gathering activities conducted by RAND to develop two measures of palliative care quality for patients receiving such care in outpatient, clinic-based settings.

The authors describe the consensus that has developed for measurement priorities in the palliative care community, provide a summary of clinical practice guidelines, and review the evidence base for palliative care. The authors also review current relevant regulations, existing measures of patient and caregiver experience, findings from a gap analysis on palliative care assessment, and findings from provider focus groups and interviews with patients and caregivers or family members.

Key Findings

  • Pain, fatigue/tiredness (including insomnia or other sleeping problems), and eating or digestive symptoms (e.g., anorexia, nausea or vomiting, constipation) are common and bothersome problems for patients in palliative care. Some studies also identified additional symptoms that appear to be prevalent but less frequently reported, such as dyspnea or respiratory problems, depression or low mood, and anxiety.
  • Communication and symptom management are core competencies for palliative care providers, and measuring quality of care based on the patient's experience in these two domains would be expected to capture overall quality of care, given how central these two factors are.
  • Pertinent clinical guidelines and regulations influence palliative care quality measurement.
  • Regulations and policy priorities focus on ways to ensure high-quality care by linking payment incentives to performance on quality measures.
  • More than 300 existing data elements in 31 patient survey or interview instruments were identified that assess communication and unmet needs with regard to symptom management in various contexts.
  • Findings from the focus groups with providers and interviews with patients and caregivers provided input on possible quality measure concepts and ways to assess key concepts through survey questions.

Table of Contents

  • Chapter One

    Project Background and Overview

  • Chapter Two

    Measurement Priorities in Palliative Care

  • Chapter Three

    Summary of Clinical Practice Guidelines

  • Chapter Four

    Review of Federal Programs

  • Chapter Five

    Existing Data Elements and Instruments That Assess Dimensions of Patient Experience Relevant to Palliative Care

  • Chapter Six

    Symptom Prevalence

  • Chapter Seven

    Review of Existing Quality Measures and Gap Analysis Summary

  • Chapter Eight

    Stakeholder Input

  • Chapter Nine

    Conclusion

  • Appendix A

    Project Team and Roles

  • Appendix B

    TECUPP Charter

  • Appendix C

    Existing Data Elements

  • Appendix D

    Provider Focus Group Guide

  • Appendix E

    Patient/Caregiver Interview Guide

  • Appendix F

    Example Data Elements Mentioned by Focus Group and Interview Participants

Research conducted by

The research described in this report was prepared for the Centers for Medicare & Medicaid Services and conducted by RAND Health Care.

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