Because of the rapid expansion of palliative care as a medical specialty, there has been a growing awareness of and emphasis on the importance of developing quality measures specific to palliative care, especially measures that capture the patient's experience of care. This report summarizes background information on the importance of and need for development of quality measures for palliative care based on patient-reported experience.
- What are the options for developing, testing, and implementing patient-reported experience measures for patients in outpatient, clinic-based settings?
- 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.
- 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
Project Background and Overview
Measurement Priorities in Palliative Care
Summary of Clinical Practice Guidelines
Review of Federal Programs
Existing Data Elements and Instruments That Assess Dimensions of Patient Experience Relevant to Palliative Care
Review of Existing Quality Measures and Gap Analysis Summary
Project Team and Roles
Existing Data Elements
Provider Focus Group Guide
Patient/Caregiver Interview Guide
Example Data Elements Mentioned by Focus Group and Interview Participants