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.

"Palliative Care Is the Only Medical Field That I Feel Like I'm Treated As a Person, Not As a Black Person": A Mixed-Methods Study of Minoritized Patient Experiences with Palliative Care.

Background: Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care. Objective: The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care. Setting/Subjects: Patients receiving outpatient palliative care (n = 153 Black patients and 2215 White patients) from 44 palliative care programs across the United States completed the survey; 14 patients and family caregivers who identified as racial/ethnic minorities participated in an in-depth qualitative interview. Measurements: We measured patients' experiences of (1) feeling heard and understood by their palliative care provider and team and (2) receiving desired help for pain using items developed from the larger quality measures project. We also conducted in-depth interviews with 14 patients and family caregivers to understand their experiences of palliative or hospice care to provide additional insight and understand nuances around minoritized patient experiences with palliative care. Results: Survey responses demonstrated that a similar proportion of Black patients and White patients (62.9% vs. 69.3%, p = 0.104) responded "completely true" to feeling heard and understood by their provider and team. Fewer Black patients than White patients felt that their provider understood what was important to them (53.3% vs. 63.9%, p = 0.009). The majority of Black patients and White patients (78.7% vs. 79.1%, p = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care. Conclusion: Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.

MACRA Palliative Care Quality Measure Development-Testing Summary Report: Measure Name: Receiving Desired Help for Pain.

Palliative care has expanded rapidly in the past 20 years, especially in the ambulatory (office) setting, and there is growing consensus regarding the need to systematically measure and incentivize high-quality care. The Centers for Medicare & Medicaid Services entered a cooperative agreement with the American Academy of Hospice and Palliative Medicine (AAHPM) as part of the Medicare Access and CHIP Reauthorization Act of 2015 to develop two patient-reported measures of ambulatory palliative care experience: Feeling Heard and Understood and Receiving Desired Help for Pain. Under contract to AAHPM, RAND Health Care researchers developed and tested both measures over a three-year project period. Researcher efforts included identifying, developing, testing, and validating appropriate patient-reported data elements for each measure; developing and fielding a survey instrument to collect necessary data in a national beta field test with 44 ambulatory palliative care programs; and collecting and analyzing data about measure reliability and validity to establish measure performance and final specifications. Further, the authors elicited provider and program perspectives on the use and value of the performance measures and their implementation and elicited the perspectives of patients from racial and ethnic minorities to understand their experience of ambulatory palliative care and optimal approaches to measurement. In this study, the authors present results from their test of the Receiving Desired Help for Pain performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.

MACRA Palliative Care Quality Measure Development-Testing Summary Report: Measure Name: Feeling Heard and Understood.

Palliative care has expanded rapidly in the past 20 years, especially in the ambulatory (office) setting, and there is growing consensus regarding the need to systematically measure and incentivize high-quality care. The Centers for Medicare & Medicaid Services entered a cooperative agreement with the American Academy of Hospice and Palliative Medicine (AAHPM) as part of the Medicare Access and CHIP Reauthorization Act of 2015 to develop two patient-reported measures of ambulatory palliative care experience: Feeling Heard and Understood and Receiving Desired Help for Pain. Under contract to AAHPM, RAND Health Care researchers developed and tested both measures over a three-year project period. Researcher efforts included identifying, developing, testing, and validating appropriate patient-reported data elements for each measure; developing and fielding a survey instrument to collect necessary data in a national beta field test with 44 ambulatory palliative care programs; and collecting and analyzing data about measure reliability and validity to establish measure performance and final specifications. Further, the authors elicited provider and program perspectives on the use and value of the performance measures and their implementation and elicited the perspectives of patients from racial and ethnic minorities to understand their experience of ambulatory palliative care and optimal approaches to measurement. In this study, the authors present results from their test of the Feeling Heard and Understood performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.

Experiences with Telehealth for Outpatient Palliative Care: Findings from a Mixed-Methods Study of Patients and Providers across the United States.

Background: The COVID-19 pandemic introduced a rapid adoption and scale-up of telehealth for palliative care services in the United Sates. Objectives: To examine and compare in-person versus telehealth experience among outpatient palliative care programs and patients. Design: Mixed-methods study (1) comparing patient experience survey data received between September 2020 and February 2021 from patients who received only in-person care versus those who received only telehealth and (2) qualitative interviews with outpatient palliative care providers. Data for this study were collected as part of a larger effort to develop quality measures for outpatient palliative care in the United States. Setting/Subjects: Outpatient palliative care patients and programs. Measurements: We measured patients' experiences of "feeling heard and understood" by their palliative care provider and team and their overall rating of their provider and team. We also conducted in-depth semistructured interviews with 47 palliative care providers across 25 outpatient palliative care programs. Results: Of 1753 patient experience surveys, 26% reflected telehealth only versus 74% in-person only. Patients in both groups reported highly positive experiences; there were no differences in "feeling heard and understood" or the overall ratings of the provider and team between the telehealth-only and in-person-only groups. Palliative care program leaders described the benefits and challenges of telehealth, including increased efficiency, the ability to incorporate family members, and challenges conducting a physical examination. Conclusion: Data from this study provide preliminary evidence of overall positive experiences of telehealth for outpatient palliative care among patients and providers; future research is needed to examine the sustainability of telehealth for palliative care.

Development of Palliative Care Quality Measures for Outpatients in a Clinic-Based Setting: A Report on Information Gathering Activities.

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 article 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.

The Serious Illness Population: Ascertainment via Electronic Health Record or Claims Data.

CONTEXT: Palliative care can improve the lives of people with serious illness, yet clear operational definitions of this population do not exist. Prior efforts to identify this population have not focused on Medicare Advantage (MA) and commercial health plan enrollees. OBJECTIVES: We aimed to operationalize our conceptual definition of serious illness to identify those with serious medical conditions (SMC) among commercial insurance and MA enrollees, and to compare the populations identified through electronic health record (EHR) or claims data sources. METHODS: We used de-identified claims and EHR data from the OptumLabs Data Warehouse (2016-2017), to identify adults age ≥18 with SMC and examine their utilization and mortality. Within the subset found in both data sources, we compared the performance of claims and EHR data. RESULTS: Within claims, SMC was identified among 10% of those aged ≥18 (5.4% ages 18-64, 27% age ≥65). Within EHR, SMC was identified among 9% of those aged ≥18 (5.6% ages 18-64, 21% ages ≥65). Hospital, emergency department and mortality rates were similar between the EHR and claims-based groups. Only 50% of people identified as having SMC were recognized by both data sources. CONCLUSION: These results demonstrate the feasibility of identifying adults with SMC in a commercially insured population, including MA enrollees; yet separate use of EHR or claims result in populations that differ. Future research should examine methods to combine these data sources to optimize identification and support population management, quality measurement, and research to improve the care of those living with serious illness.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

CONTEXT: Many clinical disciplines report high rates of burnout, which leads to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. OBJECTIVES: We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. METHODS: We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariable regression analyses to identify predictors of high rates of burnout. RESULTS: We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 38.7%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher odds of burnout include nonphysician clinical roles, working in smaller organizations, working longer hours, being younger than 50 years of age, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. CONCLUSION: Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Introduction to a New Special Series for the Journal of Pain and Symptom Management-Science in Action: Evidence and Opportunities for Palliative Care Across Diverse Populations and Care Settings.

Practices to optimize palliative care delivery and new opportunities in which to integrate palliative care vary across populations and care settings. Systematic reviews are an efficient and methodologically rigorous approach to summarize existing research to identify both evidence-based best practices and new areas for future research and clinical practice. This is the introduction to a special series of articles in which members of the American Academy of Hospice and Palliative Medicine Research Committee report the results of circumscribed systematic reviews, which in a specific population or care setting seek to 1) summarize existing evidence for optimal palliative care practices or 2) identify opportunities where better palliative care delivery could improve patient and/or family outcomes.

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.

The Implementation of Measuring What Matters in Research and Practice: Series Commentary.

The Measuring What Matters (MWM) initiative identified 10 indicators of high-quality palliative and hospice care. Members of the AAHPM Research Committee, through a special series of articles, examined applications of the MWM quality indicators in research and practice settings. Many themes were present in these articles, including the important role of electronic health records in quality measurement, challenges and strategies for implementing and tracking measures over time, and the importance of identifying new measures. This article is the final commentary of the series and includes recommendations for next steps in quality measurement.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

CONTEXT: Many clinical disciplines report high rates of burnout, which lead to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. OBJECTIVES: We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. METHODS: We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariate regression analyses to identify predictors of high rates of burnout. RESULTS: We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 62%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. CONCLUSIONS: Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting.

CONTEXT: As endorsed by the palliative care "Measuring What Matters" initiative, capturing patients' direct assessment of their care is essential for ongoing quality reporting and improvement. Fostering an environment where seriously ill patients feel heard and understood is of crucial importance to modern health care. OBJECTIVES: To describe the development and performance of a self-report field measure for seriously ill patients to report how well they feel heard and understood in the hospital environment. METHODS: As part of a larger ongoing cohort study of inpatient palliative care, we developed and administered the following point-of-care item: "Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?" (completely, quite a bit, moderately, slightly, not at all). Participants completed the measure before and the day after palliative care consultation. For the postconsultation version, we changed the time frame from "past two days" to "today." RESULTS: One hundred sixty patients with advanced cancer completed the preconsultation assessment, and 87% of them completed the postconsultation version. Responses encompassed full use of the ordinal scale, did not exhibit ceiling or floor effects, and showed improvement from preassessment to postassessment. The item was quick to administer and easy for patients to complete. CONCLUSION: The "Heard & Understood" item is a promising self-report quality measure for the inpatient palliative care setting.

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.