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

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.

Policy Changes Key To Promoting Sustainability And Growth Of The Specialty Palliative Care Workforce.

Specialized palliative care teams improve outcomes for the steadily growing population of people living with serious illness. However, few studies have examined whether the specialty palliative care workforce can meet the growing demand for its services. We used 2018 clinician survey data to model risk factors associated with palliative care clinicians leaving the field early, and we then projected physician numbers from 2019 to 2059 under four scenarios. Our modeling revealed an impending "workforce valley," with declining physician numbers that will not recover to the current level until 2045, absent policy change. However, sustained growth in the number of fellowship positions over ten years could reverse the worsening workforce shortage. There is an immediate need for policies that support high-value, team-based palliative care through expansion in all segments of the specialty palliative care workforce, combined with payment reform to encourage the deployment of sustainable teams.

The Quality Improvement Environment: Results of the 2016 AAHPM/HPNA Membership Needs Assessment Survey.

CONTEXT: The American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA) convened the Measuring What Matters (MWM) initiative in 2013, which recommended 10 quality performance measures; yet, little is known about the quality improvement (QI) environment and implementation of the MWM among hospices and palliative care services. OBJECTIVES: The objective of this study was to describe the findings of the 2016 AAHPM/HPNA Needs Assessment survey exploring the QI environment among hospice and palliative care services. METHODS: An online survey was distributed to approximately 16,500 AAHPM and HPNA members, and other hospice and palliative care organizations were invited to respond. Summary data and individual write-in responses were collated and analyzed. Data analysis included generating descriptive statistics and analyzing individual write-in responses for additional information and themes. RESULTS: More than 1000 responses were received. Most organizations had a designated QI leader and used an electronic medical record. Less than 50% of systems had fields for palliative care information. The top three MWM measures collected through an electronic medical record were pain treatment (66%), screening for physical symptoms (55%), and comprehensive assessment (54%). The most common barrier to implementing QI was time constraint. Most respondents had received no training and education in how to implement QI. CONCLUSIONS: The 2016 AAHPM/HPNA Needs Assessment Survey provided important information about the QI systems and measurement environment within hospice and palliative care services. Survey insights can aid AAHPM/HPNA in developing resources to empower hospice and palliative care clinicians to make QIs that matter for their patients and families.

Measuring what matters: top-ranked quality indicators for hospice and palliative care from the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association.

CONTEXT: Measuring quality of hospice and palliative care is critical for evaluating and improving care, but no standard U.S. quality indicator set exists. OBJECTIVES: The Measuring What Matters (MWM) project aimed to recommend a concise portfolio of valid, clinically relevant, cross-cutting indicators for internal measurement of hospice and palliative care. METHODS: The MWM process was a sequential consensus project of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA). We identified candidate indicators mapped to National Consensus Project (NCP) Palliative Care Guidelines domains. We narrowed the list through a modified Delphi rating process by a Technical Advisory Panel and Clinical User Panel and ratings from AAHPM and HPNA membership and key organizations. RESULTS: We narrowed the initial 75 indicators to a final list of 10. These include one in the NCP domain Structure and Process (Comprehensive Assessment), three in Physical Aspects (Screening for Physical Symptoms, Pain Treatment, and Dyspnea Screening and Management), one in Psychological and Psychiatric Aspects (Discussion of Emotional or Psychological Needs), one in Spiritual and Existential Aspects (Discussion of Spiritual/Religious Concerns), and three in Ethical and Legal Aspects (Documentation of Surrogate, Treatment Preferences, and Care Consistency with Documented Care Preferences). The list also recommends a global indicator of patient/family perceptions of care, but does not endorse a specific survey instrument. CONCLUSION: This consensus set of hospice and palliative care quality indicators is a foundation for standard, valid internal quality measurement for U.S. SETTINGS: Further development will assemble implementation tools for quality measurement and benchmarking.