A Systematic Review of Strategies to Enhance Response Rates and Representativeness of Patient Experience Surveys.

BACKGROUND: Data from surveys of patient care experiences are a cornerstone of public reporting and pay-for-performance initiatives. Recently, increasing concerns have been raised about survey response rates and how to promote equity by ensuring that responses represent the perspectives of all patients. OBJECTIVE: Review evidence on survey administration strategies to improve response rates and representativeness of patient surveys. RESEARCH DESIGN: Systematic review adhering to the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines. STUDY SELECTION: Forty peer-reviewed randomized experiments of administration protocols for patient experience surveys. RESULTS: Mail administration with telephone follow-up provides a median response rate benefit of 13% compared with mail-only or telephone-only. While surveys administered only by web typically result in lower response rates than those administered by mail or telephone (median difference in response rate: -21%, range: -44%, 0%), the limited evidence for a sequential web-mail-telephone mode suggests a potential response rate benefit over sequential mail-telephone (median: 4%, range: 2%, 5%). Telephone-only and sequential mixed modes including telephone may yield better representation across patient subgroups by age, insurance type, and race/ethnicity. Monetary incentives are associated with large increases in response rates (median increase: 12%, range: 7%, 20%). CONCLUSIONS: Sequential mixed-mode administration yields higher patient survey response rates than a single mode. Including telephone in sequential mixed-mode administration improves response among those with historically lower response rates; including web in mixed-mode administration may increase response at lower cost. Other promising strategies to improve response rates include in-person survey administration during hospital discharge, incentives, minimizing survey language complexity, and prenotification before survey administration.

Comparing Quality of Care in Veterans Affairs and Non-Veterans Affairs Settings.

BACKGROUND: Congress, veterans' groups, and the press have expressed concerns that access to care and quality of care in Department of Veterans Affairs (VA) settings are inferior to access and quality in non-VA settings. OBJECTIVE: To assess quality of outpatient and inpatient care in VA at the national level and facility level and to compare performance between VA and non-VA settings using recent performance measure data. MAIN MEASURES: We assessed Patient Safety Indicators (PSIs), 30-day risk-standardized mortality and readmission measures, and ORYX measures for inpatient safety and effectiveness; Healthcare Effectiveness Data and Information Set (HEDIS®) measures for outpatient effectiveness; and Consumer Assessment of Healthcare Providers and Systems Hospital Survey (HCAHPS) and Survey of Healthcare Experiences of Patients (SHEP) survey measures for inpatient patient-centeredness. For inpatient care, we used propensity score matching to identify a subset of non-VA hospitals that were comparable to VA hospitals. KEY RESULTS: VA hospitals performed on average the same as or significantly better than non-VA hospitals on all six measures of inpatient safety, all three inpatient mortality measures, and 12 inpatient effectiveness measures, but significantly worse than non-VA hospitals on three readmission measures and two effectiveness measures. The performance of VA facilities was significantly better than commercial HMOs and Medicaid HMOs for all 16 outpatient effectiveness measures and for Medicare HMOs, it was significantly better for 14 measures and did not differ for two measures. High variation across VA facilities in the performance of some quality measures was observed, although variation was even greater among non-VA facilities. CONCLUSIONS: The VA system performed similarly or better than the non-VA system on most of the nationally recognized measures of inpatient and outpatient care quality, but high variation across VA facilities indicates a need for targeted quality improvement.

Comparing VA and Non-VA Quality of Care: A Systematic Review.

BACKGROUND: The Veterans Affairs (VA) health care system aims to provide high-quality medical care to veterans in the USA, but the quality of VA care has recently drawn the concern of Congress. The objective of this study was to systematically review published evidence examining the quality of care provided at VA health care facilities compared to quality of care in other facilities and systems. METHODS: Building on the search strategy and results of a prior systematic review, we searched MEDLINE (from January 1, 2005, to January 1, 2015) to identify relevant articles on the quality of care at VA facilities compared to non-VA facilities. Articles from the prior systematic review published from 2005 and onward were also included and re-abstracted. Studies were classified, analyzed, and summarized by the Institute of Medicine's quality dimensions. RESULTS: Sixty-nine articles were identified (including 31 articles from the prior systematic review and 38 new articles) that address one or more Institute of Medicine quality dimensions: safety (34 articles), effectiveness (24 articles), efficiency (9 articles), patient-centeredness (5 articles), equity (4 articles), and timeliness (1 article). Studies of safety and effectiveness indicated generally better or equal performance, with some exceptions. Too few articles related to timeliness, equity, efficiency, and patient-centeredness were found from which to reliably draw conclusions about VA care related to these dimensions. DISCUSSION: The VA often (but not always) performs better than or similarly to other systems of care with regard to the safety and effectiveness of care. Additional studies of quality of care in the VA are needed on all aspects of quality, but particularly with regard to timeliness, equity, efficiency, and patient-centeredness.

Should health care providers be accountable for patients' care experiences?

Measures of patients' care experiences are increasingly used as quality measures in accountability initiatives. As the prominence and financial impact of patient experience measures have increased, so too have concerns about the relevance and fairness of including them as indicators of health care quality. Using evidence from the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) surveys, the most widely used patient experience measures in the United States, we address seven common critiques of patient experience measures: (1) consumers do not have the expertise needed to evaluate care quality; (2) patient "satisfaction" is subjective and thus not valid or actionable; (3) increasing emphasis on improving patient experiences encourages health care providers and plans to fulfill patient desires, leading to care that is inappropriate, ineffective, and/or inefficient; (4) there is a trade-off between providing good patient experiences and providing high-quality clinical care; (5) patient scores cannot be fairly compared across health care providers or plans due to factors beyond providers' control; (6) response rates to patient experience surveys are low, or responses reflect only patients with extreme experiences; and (7) there are faster, cheaper, and more customized ways to survey patients than the standardized approaches mandated by federal accountability initiatives.

Which medicare advantage enrollees are at highest one-year mortality risk?

BACKGROUND: While a number of tools exist to predict mortality among older adults, less research has described the characteristics of Medicare Advantage (MA) enrollees at higher risk for 1 year mortality. OBJECTIVES: To describe the characteristics of MA enrollees at higher mortality risk using patient survey data. RESEARCH DESIGN: Retrospective cohort. SUBJECTS: MA enrollees completing the 2019 MA Consumer Assessment of Healthcare Providers and Systems (CAHPS) Survey. MEASURES: Linked demographic, health, and mortality data from a sample of MA enrollees were used to predict 1-year mortality risk and describe enrollee characteristics across levels of predicted mortality risk. RESULTS: The mortality model had a 0.80 c-statistic. Mortality risks were skewed: 6 % of enrollees had a ≥ 10 % 1-year mortality risk, while 45 % of enrollees had 1 % to < 5 % 1-year mortality risk. Among the high-risk (≥10 %) group, 47 % were age 85+ versus 12 % among those with mortality risk <5 %. 79 % were in fair or poor self-rated health versus 29 % among those with mortality risk of <5 %. 71 % reported needing urgent care in the prior 6 months versus 40 % among those with a mortality risk of 1 to<5 %. CONCLUSIONS: Relatively few older adults enrolled in MA are at high 1-year mortality risk. Nonetheless, MA enrollees over age 85, in fair or poor health, or with recent urgent care needs are far more likely to be in a high mortality risk group.

Concurrent Care as the Next Frontier in End-of-Life Care.

Importance: Hospice care is a unique type of medical care for people near the end of life and their families, with an emphasis on providing physical and psychological symptom management, spiritual care, and family caregiver support to promote quality of life. However, many people in the US who could benefit from hospice have very short stays or do not enroll at all due to current hospice policy. Changing policy to allow for concurrent availability of disease-directed therapy and hospice care-known as concurrent care-offers an opportunity to increase hospice use and lengths of stay. Observations: Under Medicare payment policy, hospices are responsible for covering all costs related to patients' terminal conditions under a per diem rate. This payment structure has led to a de facto requirement that patients forgo costly therapies (including life-prolonging treatments or those with palliative intent) on enrollment in hospice because they are prohibitively expensive. In other countries, in Medicaid for children, and in the Veterans Health Administration in the US, there is greater flexibility in providing hospice services alongside life-prolonging care. Often paired with innovative payment models, concurrent care smooths practical, psychological, and physical care transitions when patient goals prioritize comfort. For example, allowing simultaneous receipt of hospice care and dialysis for people living with end-stage kidney disease-a group with relatively low hospice enrollment-can act as a bridge to hospice and potentially promote longer lengths of stay. Conclusions and Relevance: Medicare and health care delivery systems are increasingly testing payment and care delivery models to improve hospice use via concurrent care, offering an important opportunity for innovation to better meet the needs of people living with serious illness and their families.

Association of Hospice Profit Status With Family Caregivers' Reported Care Experiences.

Importance: Expansive growth in the US hospice market has been driven almost exclusively by an increase in for-profit hospices. Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff. However, prior studies have not reported on the associations of these differences in care patterns with hospice care quality. Patient- and family-centeredness is a core element of hospice care quality that is measured through surveys of care experiences. Objective: To examine whether differences in profit status are associated with family caregivers' reports of hospice care experiences and assess factors that may be associated with observed differences in care experiences by profit status. Design, Setting, and Participants: Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from 653 208 caregiver respondents, reflecting care received from 3107 hospices between April 2017 and March 2019, were used for a cross-sectional examination of hospice care experiences by profit status. Data analysis was performed from January 2020 to November 2022. Main Outcomes and Measures: Outcomes were case-mix-adjusted and mode-adjusted top-box scores for 8 measures of hospice care experiences, including communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics. Results: There were 906 not-for-profit and 1761 for-profit hospices with mean (SD) time in operation of 25.7 (7.8) years and 13.8 (8.0) years, respectively. Mean (SD) decedent age at death was 82.8 (2.3) years, similar for not-for-profit and for-profit hospices. The mean proportion of patients who were Black, Hispanic, and White was 4.9%, 0.9%, and 91.4% for not-for-profit hospices and 9.0%, 2.2%, and 85.4% for for-profit hospices, respectively. Family caregivers reported worse care experiences at for-profit hospices than at not-for-profit hospices for all measures. Significant differences in average hospice performance by profit status remained after adjusting for hospice characteristics. However, for-profit hospice performance varied, with 548 of 1761 (31.1%) for-profit hospices scoring 3 or more points below the national hospice average of overall performance and 386 of 1761 (21.9%) scoring 3 or more points above the average. In contrast, only 113 of 906 (12.5%) not-for-profit hospices scored 3 or more points below the average, and 305 of 906 (33.7%) scored 3 or more points above the average. Conclusions and Relevance: In this cross-sectional study of CAHPS Hospice Survey data, caregivers of patients receiving hospice care reported substantially worse care experiences in for-profit than in not-for-profit hospices; however, there was variation in reported experiences among both types of hospices. Public reporting of hospice quality is important.

Adjusting for Patient Characteristics to Compare Quality of Care Provided by Serious Illness Programs.

Background: To compare serious illness programs (SIPs) using recently developed patient experience measures, adjustment must be made for patient characteristics not under control of the programs. Objectives: To develop a case-mix adjustment model to enable fair comparison of patient experience between SIPs by investigating the roles of patient characteristics, proxy response, and mode of survey administration (mail-only vs. mail with telephone follow-up) in survey responses. Methods: Using survey data from 2263 patients from 32 home-based SIPs across the United States, we fit regression models to assess the association between patient-level variables and scores for seven quality measures (Communication, Care Coordination, Help for Symptoms, Planning for Care, Support for Family and Friends, and two global assessments of care). Characteristics that are not consequences of the care the program delivered were considered as adjustors. Results: Final recommended case-mix adjustors are age, education, primary diagnosis, self-reported functional status, self-rated physical health, self-rated mental health, proxy respondent use, and response percentile (a measure of how soon a person responded compared with others in the same program and mode). Age, primary diagnosis, self-rated mental health, and proxy respondent use had the most impact on program-level scores. We also recommend adjusting for mode of survey administration. We find that up to 12 percent of pairs of programs would have their rankings reversed by adjustment. Conclusions: To ensure fair comparison of programs, scores should be case-mix adjusted for variables that influence patients' reports about care quality, but are not under the control of the program administering care.

Reliable and Valid Survey-Based Measures to Assess Quality of Care in Home-Based Serious Illness Programs.

Background: There is a pressing need for standardized measures to assess the quality of home-based serious illness care. Currently, there are no validated quality measures that are specific to home-based serious illness programs (SIPs) and the unique needs of their patients. Objective: To develop and evaluate standardized survey-based measures of serious illness care experiences for assessing and comparing quality of home-based serious illness care programs. Methods: From October 2019 through January 2020, we administered a survey to patients who received care from 32 home-based SIPs across the United States. Using the 2263 survey responses, we assessed item performance and constructed composite measures via factor analysis, evaluated item-scale correlations, estimated reliability, and examined validity by regressing overall ratings and willingness to recommend care on each composite. Results: The overall survey response rate was 36%. Confirmatory factor analyses supported five composite quality measures: Communication, Care Coordination, Help for Symptoms, Planning for Care, and Support for Family and Friends. Cronbach's alpha estimates for the composite measures ranged from 0.69 to 0.85, indicating adequate internal consistency in assessing their underlying constructs. Interprogram reliability ranged from 0.67 to 0.80 at 100 completed surveys per measure, meeting common standards for distinguishing between programs' performance. Together, the composites explained 45% of the variance in patients' overall care ratings. Communication, Care Coordination, and Planning for Care were the strongest predictors of overall ratings. Conclusion: Our analyses provide evidence of the feasibility, reliability, and validity of proposed survey-based measures to assess the quality of home-based serious illness care from the perspective of patients and their families.

Human papillomavirus vaccine uptake among 9- to 17-year-old girls: National Health Interview Survey, 2008.

BACKGROUND: Since 2006, the human papillomavirus (HPV) vaccine has been routinely recommended for preadolescent and adolescent girls in the United States. Depending on uptake patterns, HPV vaccine could reduce existing disparities in cervical cancer. METHODS: HPV vaccination status and reasons for not vaccinating were assessed using data from the 2008 National Health Interview Survey. Households with a girl aged 9-17 years were included (N = 2205). Sociodemographic factors and health behaviors associated with vaccine uptake were assessed using multivariate logistic regression. RESULTS: Overall, 2.8% of 9- to 10-year-olds, 14.7% of 11- to 12-year-olds, and 25.4% of 13- to 17-year-olds received at least 1 dose of HPV vaccine; 5.5% of 11- to 12-year-olds and 10.7% of 13- to 17-year-olds received all 3 doses. Factors associated with higher uptake in multivariate analysis included less than high school parental education, well-child check and influenza shot in the past year, and parental familiarity with HPV vaccine. Parents' primary reasons for not vaccinating were beliefs that their daughters did not need vaccination, that their daughters were not sexually active, or had insufficient vaccine knowledge. More parents with private insurance (58.0%) than public (39.8%) or no insurance (39.5%) would pay $360-$500 to vaccinate their daughters. CONCLUSIONS: Less than one quarter of girls aged 9-17 years had initiated HPV vaccination by the end of 2008. Efforts to increase HPV uptake should focus on girls in the target age group, encourage providers to educate parents, and promote access to reduced-cost vaccines.

Use of human papillomavirus vaccines among young adult women in the United States: an analysis of the 2008 National Health Interview Survey.

BACKGROUND: The Centers for Disease Control and Prevention recommends catch-up administration of human papillomavirus (HPV) vaccines to girls and women ages 13 to 26 who have not been vaccinated previously. In response to debate regarding catch-up vaccination of young adult women, this study examined whether 18- to 26-year-old women most likely to benefit from catch-up vaccination were aware of the HPV vaccine, and initiated the vaccine series by the end of 2008. METHODS: We used data from the 2008 National Health Interview Survey to assess HPV vaccine awareness and use, and reasons for not vaccinating, among women aged 18-26 years (n = 1583). Sociodemographic, health care access, and health history factors associated with vaccine initiation were assessed using multivariate logistic regression. RESULTS: Overall, 11.7% of women aged 18-26 years reported receiving at least 1 dose of the HPV vaccine by the end of 2008. In multivariate analyses, younger age, history of previous HPV infection, unmarried status, health insurance, flu shot in the past year, and receipt of 1 or more recommended lifetime vaccines were significantly associated with HPV vaccine initiation. Two-fifths (39.6%) of unvaccinated women were interested in receiving the HPV vaccine (n = 1327). Primary reasons for lack of interest in the vaccine were belief that it was not needed, not knowing enough about it, concerns about safety, and not being sexually active. CONCLUSION: HPV vaccine coverage among young adult women was low, and lower among the uninsured than the insured. Public financing and care provision programs have the potential to expand vaccine coverage among uninsured women, who are at increased risk of cervical cancer.

"If We Turned Our Backs, They Would Ignore Our Wishes": Bereaved Family Perceptions of Concordance of Care at the End of Life.

Background: The key to high-quality care at the end of life is goal-concordant care, defined as care that is consistent with patient wishes. Objectives: To characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored. Design: Mortality follow-back survey and in-depth interviews. Setting/Subjects: Survey responses (n = 601) were from next of kin of decedents who died in the San Francisco Bay area of the United States. Interviews were conducted with 51 next of kin, of whom 14 indicated that the decedent received care that was inconsistent with their wishes. Measurements: The survey asked if the decedent had wishes or plans for care and if care provided ever went against those wishes. In-depth interviews focused on aspects of care at the end of life that were not consistent with the decedent's wishes. Results: Approximately 10% of next of kin who reported on the survey that the decedent had specific wishes for medical care at the end of life also reported that the decedent received care that went against their wishes in the last month of life. The main theme of the in-depth interviews with next of kin who reported care that went against wishes was that discordant care was inconsistent with wishes for comfort-focused care and a lack of symptom palliation. Conclusions: Despite decades of work to improve quality of end-of-life care, poor pain and symptom management that result in lack of comfort remain the main reason that next of kin state wishes were not honored.

Association between Receipt of Emotional Support and Caregivers' Overall Hospice Rating.

Background: A major goal of hospice care is to provide individually tailored emotional and spiritual support to caregivers of hospice patients. Objectives: Examine the association between reported emotional support and caregivers' overall rating of hospice care, overall and by race/ethnicity/language. Subjects: We analyzed survey data corresponding to 657,805 decedents/caregivers who received care from 3160 hospice programs during January 2017-December 2018. Measurements: Linear regression models examined the association between caregiver-reported receipt of emotional and spiritual support ("too little" vs. "right amount" vs. "too much") and overall rating of the hospice (0 vs. 100 rating). Interaction terms assessed variation in this association by race/ethnicity/language. Results: "Too much" emotional support was less common than "too little," except for caregivers of Hispanic decedents responding in Spanish. "Too little" support was strongly associated with lower hospice ratings for all groups (compared to "right amount" of support, p < 0.001). In contrast, the negative association between "too much" support and hospice rating was much smaller (p < 0.001) among caregivers of white and black decedents. "Too much" support was associated with more positive ratings among caregivers of Hispanic decedents (p < 0.001). Conclusions: Receipt of "too much" support is a less common and much weaker driver of poor hospice ratings than receipt of "too little" support for all groups, and is not always viewed negatively. This suggests that for hospice evaluation, "too much" support should not be scored equivalently to "too little" support and that providing enough support should be a hospice priority.

Racial Differences in End-of-Life Care Quality between Asian Americans and Non-Hispanic Whites in San Francisco Bay Area.

Background: Little is known about end-of-life care experiences of Asian Americans and gaps in end-of-life care quality between Asians and non-Hispanic whites. Objective: Compare the perceptions of next-of-kin of Asian and non-Hispanic white decedents on end-of-life care quality. Design: Mortality follow-back survey. Setting/Subjects: Population-based sample of 108 Asian and 414 non-Hispanic white bereaved family members or close friends of adult, nontraumatic deaths in the San Francisco Bay area in 2018. Measurements: Survey items examined whether health care professionals treated the dying person with respect and dignity, respected their cultural traditions, respected their religious or spiritual beliefs, provided enough information about what to expect during the last month of life, provided emotional support to the family after the patient's death, and whether the dying person and the family received the needed help after work hours. Results: Of the 623 surveys (weighted n = 6513), 108 (weighted percentage = 17.6%) were from caregivers of Asian decedents. Almost half of these respondents indicated that they did not always experience respect for their cultural traditions (45.9% vs. 21.8%, p = 0.00) or respect for their religious and spiritual beliefs (42.2% vs. 24.5%, p = 0.01). With the exception of two outcomes, worse caregiver-reported care quality for Asian decedents persisted after adjustment for cause of death, site of death, type of health insurance, respondent's relationship to decedent, decedent age, and respondent education. Conclusions: Compared with caregivers of non-Hispanic whites, caregivers of Asian decedents reported unmet needs for caregiver support and lack of respect for cultural traditions and religious/spiritual beliefs.

Bereaved Family More Likely to Report "Too Little" Care than "Too Much" Care at the End of Life.

Background: An often-stated concern is that dying persons receive too much aggressive medical care. Objective: Examine next-of-kin perceptions of the amount of medical care received in the last month of life. Design: Mixed-methods study with 623 survey responses and in-depth interviews with a subsample of 17 respondents. Subjects: Nontraumatic deaths 18 years and older in San Francisco Bay area. Measure: The survey asked: "During the last month of your family member's life, did he or she receive too little, the right amount, or too much medical care?" Additionally, surveys examined 18 measures of quality of care in the last month of life, reporting concerns or unmet needs with staff communication, symptom management, emotional support, physician communication, treating the patient with dignity, respecting a person's culture, spiritual support, and providing timely help after hours. Results: Of the 623 survey respondents, 16.9% reported their loved one received "too little" care while only 1.4% reported "too much." Likelihood of reporting too little medical care did not differ by age, gender, or being insured by Medicaid only. Respondents who reported "too little" compared with those that stated the "right amount" reported higher unmet needs for symptom palliation, physician communication concerns, with other important opportunities to improve the quality of care. Among the 17 in-depth interviews of those indicating "too little" care on the structured survey, the predominant concern (n = 10) was inadequate symptom management. Conclusion: While the majority of respondents indicated their loved one received the right amount of medical care at the end of life, a notable minority (one in six) indicated that their loved one received too little care.

Characteristics of Hospices Providing High-Quality Care.

Background: The hospice market has changed substantially, shifting from predominately not-for-profit independent entities to for-profit national chains. Little is known about how hospice organizational characteristics are associated with quality of hospice care. Objective: To examine the association between hospice characteristics and care processes and performance on measures of hospice care quality. Design: Logistic regression models assessed the association between hospice characteristics and processes and hospices being in the top quartile of quality measure performance. Setting/Subjects: U.S. hospices with publicly reported measure scores in 2015-2017. Measurements: Summaries of hospice-level performance on Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey measures (including communication, timely care, symptom management, emotional and spiritual support, respect, training families, overall rating, and willingness to recommend) and Hospice Item Set (HIS) measures (including pain screening and assessment, dyspnea screening and treatment, bowel regimen for patients on opioids, discussion of treatment preferences, and beliefs/values addressed). Results: Of the 2746 hospices that met public reporting requirements, 5.6% were in the top quartile of both CAHPS and HIS performance. Characteristics associated with being in the top quartile for CAHPS included being a nonprofit and nonchain or government hospice, smaller size (<200 patients per year), and serving a rural area. Characteristics associated with being in the top quartile for HIS included being in a for-profit chain, larger size (91+ patients per year), and having <40% of patients in a nursing home. Providing professional staff visits in the last two days of life to a higher proportion of patients was associated with hospices being in the top quartile of HIS and in the top quartile of CAHPS. Conclusions: Hospice characteristics associated with strong performance on HIS measures differ from those associated with strong performance on CAHPS measures. Providing professional staff visits in the last two days of life is associated with high performance on both quality domains.

Differences in Caregiver Reports of the Quality of Hospice Care Across Settings.

OBJECTIVES: To examine variation in reported experiences with hospice care by setting. DESIGN: Consumer Assessment of Healthcare Providers and Systems Hospice (CAHPS®) Survey data from 2016 were analyzed. Multivariate linear regression analysis was used to examine differences in measure scores by setting of care (home, nursing home [NH], hospital, freestanding hospice inpatient unit [IPU], and assisted living facility [ALF]). SETTING: A total of 2636 US hospices. PARTICIPANTS: A total of 311 635 primary caregivers of patients who died in hospice. MEASUREMENTS: Outcomes were seven hospice quality measures, including five composite measures that assess aspects of hospice care important to patients and families, including hospice team communication, timeliness of care, treating family member with respect, symptom management, and emotional and spiritual support, and two global measures of the overall rating of the hospice and willingness to recommend it to friends and family. Analyses were adjusted for mode of survey administration and differences in case-mix between hospices. RESULTS: Caregivers of decedents who received hospice care in a NH reported significantly worse experiences than caregivers of those in the home for all measures. ALF scores were also significantly lower than home for all measures, except providing emotional and spiritual support. Differences in NH and ALF settings compared to home were particularly large for hospice team communication (ranging from -11 to -12 on a 0-100 scale) and getting help for symptoms (ranging from -7 to -10). Consistently across all care settings, hospice team communication, treating family member with respect, and providing emotional and spiritual support were most strongly associated with overall rating of care. CONCLUSIONS: Important opportunities exist to improve quality of hospice care in NHs and ALFs. Quality improvement and regulatory interventions targeting the NH and ALF settings are needed to ensure that all hospice decedents and their family receive high-quality, patient- and family-centered hospice care. J Am Geriatr Soc 68:1218-1225, 2020.

Quality Measurement of Serious Illness Communication: Recommendations for Health Systems Based on Findings from a Symposium of National Experts.

Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients. Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.

Measuring Patient-Centeredness of Care for Seriously Ill Individuals: Challenges and Opportunities for Accountability Initiatives.

Patient- and family-centeredness of care is particularly important for individuals with serious illness. In this article, we describe methodological challenges of using measures of patient- and family-centeredness in accountability initiatives such as public reporting and pay for performance. We begin with background on measuring patient- and family-centered care using standardized surveys, describe evidence of the use of these measures for quality improvement, and highlight methodological challenges in the development and implementation of these measures for use in accountability. To ensure that patient- and family-centeredness is the cornerstone of public and private accountability initiatives designed to promote high-quality care to seriously ill patients, we recommend development of (1) a nationally endorsed survey instrument that assesses patient and family experiences of serious illness care across the full range of patient trajectories and care settings in which this care is provided; (2) administrative data infrastructure that allows for identification and outreach to the most knowledgeable respondents for the survey, regardless of the patient's setting of care; and (3) a broad toolkit of quality improvement approaches to ensure that as the emphasis on accountability grows, providers across settings have access to tools that can help them improve patient- and family-centeredness of care for the seriously ill.