Variation in Hospice Experiences by Care Setting for Patients With Dementia.

OBJECTIVES: Use of hospice care among patients with dementia has been steadily increasing. Our objectives were to characterize quality of hospice care experiences among decedents who had a primary diagnosis of dementia and their caregivers and investigate differences across settings of hospice care. DESIGN: We analyzed Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from caregiver respondents whose family members received hospice care. SETTING AND PARTICIPANTS: Data from 96,845 caregiver respondents whose family members had a primary diagnosis of dementia and died in 2017 or 2018 while receiving hospice care in 2829 hospices. METHODS: We calculated quality measure scores overall and stratified by setting, adjusting for mode of survey administration and differences in case mix, and examined variability in hospice-level scores among decedents with dementia. RESULTS: Mean quality measure scores ranged from 69.0 (Getting Hospice Care Training) to 90.9 (Getting Emotional Support). Measure scores varied significantly across settings, with caregivers of decedents who received care in a nursing home (NH), acute care hospital (ACH), or assisted living facility (ALF) consistently reporting poorer quality of care. Hospice-level scores varied substantially, with a wide range between the 10th and 90th percentiles of hospice performance (eg, 25 points). CONCLUSIONS AND IMPLICATIONS: There are important opportunities to improve hospice care for patients with dementia and their caregivers, particularly with respect to caregiver training, symptom management, and across all dimensions within the NH, ACH, and ALF settings. Variability in care experiences across hospices, as well as long lengths of stay for those with dementia, highlight the importance of informed and timely hospice referral.

Hospice Care Experiences Among Decedents With Huntington's Disease.

CONTEXT: Little is known about the hospice care experiences of those with Huntington's Disease (HD). OBJECTIVES: Our objective is to provide the first national characterization of hospice care quality for patients with HD and their families. METHODS: We used national Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data to examine caregiver-reported experiences of hospice care. We analyzed data from 550 caregivers of patients with HD and 1,098,819 caregivers of patients without HD who died January 2016-June 2019 while receiving hospice care from 3,845 hospices nationwide. Outcomes (on a 0-100 scale) were eight publicly-reported quality of care measures, and four individual survey items about receiving help for specific symptoms. Analyses were propensity-score weighted and adjusted for patient and caregiver characteristics. RESULTS: Experiences of care among patients with HD were similar to or better than for patients without HD. Across all hospice and care settings, the only significant difference was for Providing Emotional, and Spiritual Support (90.9 [HD] vs. 88.2 [non-HD], a medium effect size, P < 0.01). However, patients with HD more often received care in settings with worse experiences for all patients; within the same hospice and same setting of care, measure scores were significantly higher for patients with HD compared to those without HD (2.3-4.6 points higher on a 0-100 scale) for all measures except Getting Hospice Care Training. CONCLUSION: Our findings highlight the benefits of hospice care for those with HD and their families and may be useful for patients with HD when making decisions regarding options for end-of-life care.

Examining the Business Case for Patient Experience: A Systematic Review.

EXECUTIVE SUMMARY: Hospitals, physician groups, and other healthcare providers are investing in improved patient care experiences. Prior reviews have concluded that better patient care experiences are associated with less healthcare utilization and better adherence to recommended prevention and treatment, clinical outcomes, and patient safety within hospitals. No comprehensive review has examined the business case for investing in patient experiences. This article reviews the literature on associations between patient experience-measured from the perspective of patients and families-and business outcomes, including patient allegiance and retention, complaints, lawsuits, provider job satisfaction, and profitability. We searched U.S. English-language peer-reviewed articles from January 1990 to July 2019. We followed the preferred reporting items for systematic reviews and meta-analyses guidelines and undertook a full-text review of 564 articles, yielding the inclusion of 40 articles. Our review found that patients with positive care experiences are more likely to return to the same hospital and ambulatory settings for future healthcare needs, retain their health plan, and voice fewer complaints. Associations between patient experiences and profitability or provider job satisfaction were limited/mixed. This suggests that providers can pursue better patient care experiences for the intrinsic value to patients, while also recognizing it is good for intermediate business outcomes: specifically increased recommendations, better patient retention, and fewer complaints. Nursing and physician care, broadly defined, are the only specific aspects of patient experience consistently associated with retention, with evidence pointing to communication and trust as parts of care linked to the intent to return. These aspects of patient experience are also the largest contributors to the overall ratings of a provider or facility.

Hospice Care Experiences Among Cancer Patients and Their Caregivers.

BACKGROUND: Little is known about the current quality of care for hospice cancer patients and how it varies across hospice programs in the USA. OBJECTIVE: To examine hospice care experiences among decedents with a primary cancer diagnosis and their family caregivers, comparing quality across settings of hospice care. DESIGN: We analyzed data from the Consumer Assessment of Healthcare Providers and Systems Hospice Survey (32% response rate). Top-box outcomes (0-100) were calculated overall and by care setting, adjusting for survey mode and patient case mix. PARTICIPANTS: Two hundred seventeen thousand five hundred ninety-six caregiver respondents whose family member had a primary cancer diagnosis and died in 2017 or 2018 while receiving hospice care from 2,890 hospices nationwide. MAIN MEASURES: Outcomes (0-100 scale) included 8 National Quality Forum-endorsed quality measures, as well as responses to 4 survey questions assessing whether needs were met for specific symptoms (pain, dyspnea, constipation, anxiety/sadness). KEY RESULTS: Quality measure scores ranged from 74.9 (Getting Hospice Care Training measure) to 89.5 (Treating Family Member with Respect measure). The overall score for Getting Help for Symptoms was 75.1 with item scores within this measure ranging from 60.6 (getting needed help for feelings of anxiety or sadness) to 84.5 (getting needed help for pain). Measure scores varied significantly across settings and differences were large in magnitude, with caregivers of decedents who received care in a nursing home (NH) or assisted living facility (ALF) setting consistently reporting poorer quality of care. CONCLUSIONS: Important opportunities exist to improve hospice care for symptom palliation and providing training for caregivers when their family members are at home or in an ALF setting. Efforts to improve care for cancer patients in the NH and ALF setting are especially needed.

Effects of Caregiver and Decedent Characteristics on CAHPS Hospice Survey Scores.

CONTEXT: The Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Hospice Survey assesses the care experiences of hospice patients and their families. Public reporting of hospice performance on these survey measures began in February 2018. OBJECTIVES: Develop an appropriate case-mix adjustment (CMA) model to allow for fair comparisons between hospices. METHODS: We analyzed CAHPS Hospice Survey data reflecting experiences of 915,442 patients who received care from 2513 hospice programs between April 2015 and March 2016. Decedent and caregiver characteristics were identified for inclusion in CMA based on their variation across hospices (as measured by intraclass correlation coefficients [ICCs]) and how predictive they were of responses to survey questions (as assessed by linear regression). RESULTS: The final CMA model included decedent age, payer for hospice care, primary diagnosis, length of final episode of hospice care, caregiver age, caregiver education, relationship to decedent, survey language/language spoken at home, and response percentile. The characteristics that varied most across hospices were language (ICC = 0.48 for Spanish survey or home language) and payer for hospice care (ICC = 0.42 for Medicare only; ICC = 0.35 for Medicare and private insurance). The characteristics that were most predictive of caregivers' survey responses were payer for hospice care, caregiver education, and survey language/language spoken at home. Lack of appropriate adjustment would incorrectly rank hospices by 1.2-5.4 percentile points. CONCLUSION: To ensure fair comparisons across hospices, CAHPS Hospice Survey measure scores should be adjusted for several caregiver and decedent characteristics.

Challenges Of Measuring Quality Of Community-Based Programs For Seriously Ill Individuals And Their Families.

For many individuals and their families, acknowledging and confronting a serious illness such as cancer or advanced heart failure is a sentinel life event. From a health policy perspective, many individuals confronting such illnesses are high-need, high-cost patients who are increasingly cared for by community-based programs that may have competing goals: improving quality and reducing costs. Providing care to high-need, high-cost patients tests a health care system's ability to coordinate care and adapt to highly variable disease trajectories that could result in improved health for some, sudden and unexpected death for others, and a prolonged period of functional impairment for the majority. With the rapid growth in the number of community-based programs, efforts are needed to ensure transparency and accountability for this vulnerable population. In this article we outline the challenges in measuring quality of care for seriously ill patients, offer potential solutions, and call for new research to produce quality measures that ensure accountability for the care provided to seriously ill individuals and their families.

Black And Hispanic Patients Receive Hospice Care Similar To That Of White Patients When In The Same Hospices.

Little is known about racial and ethnic variation in the quality of hospice care. We used data on 292,516 respondents for 2015-16 from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey to assess how the patient and family experience of hospice care differed among black, Hispanic, and white patients. We found that, on average, black and Hispanic patients received care from poorer quality hospices. Within a given hospice, we found that friends and relatives who served as caregivers of black and Hispanic patients reported significantly better hospice care experiences than their peers serving as caregivers of white patients on five of seven outcomes. However, caregivers of black and Hispanic patients reported receiving their desired level of emotional and religious support less often than caregivers of white patients did. As more black and Hispanic patients enroll in hospice care, it is critical to ensure that they have access to high-quality, culturally competent hospice services.

Direct Release of Test Results to Patients Increases Patient Engagement and Utilization of Care.

An important focus for meaningful use criteria is to engage patients in their care by allowing them online access to their health information, including test results. There has been little evaluation of such initiatives. Using a mixed methods analysis of electronic health record data, surveys, and qualitative interviews, we examined the impact of allowing patients to view their test results via patient portal in one large health system. Quantitative data were collected for new users and all users of the patient portal. Qualitative interviews occurred with patients who had received an HbA1c or abnormal Pap result. Survey participants were active patient portal users. Our main measures were patient portal usage, factors associated with viewing test results and utilizing care, and patient and provider experiences with patient portal and direct release. Usage data show 80% of all patient portal users viewed test results during the year. Of survey respondents, 82.7% noted test results to be a very useful feature and 70% agreed that patient portal has made their provider more accessible to them. Interviewed patients reported feeling they should have direct access to test results and identified the ability to monitor results over time and prepare prior to communicating with a provider as benefits. In interviews, both patients and physicians reported instances of test results leading to unnecessary patient anxiety. Both groups noted the benefits of results released with provider interpretation. Quantitative data showed patient utilization to increase with viewing test results online, but this effect is mitigated when results are manually released by physicians. Our findings demonstrate that patient portal access to test results was highly valued by patients and appeared to increase patient engagement. However, it may lead to patient anxiety and increase rates of patient visits. We discuss how such unintended consequences can be addressed and larger implications for meaningful use criteria.

Resources and Capabilities of the Department of Veterans Affairs to Provide Timely and Accessible Care to Veterans.

The Veterans Access, Choice, and Accountability Act of 2014 addressed the need for access to timely, high-quality health care for veterans. Section 201 of the legislation called for an independent assessment of various aspects of veterans' health care. The RAND Corporation was tasked with an assessment of the Department of Veterans Affairs (VA) current and projected health care capabilities and resources. An examination of data from a variety of sources, along with a survey of VA medical facility leaders, revealed the breadth and depth of VA resources and capabilities: fiscal resources, workforce and human resources, physical infrastructure, interorganizational relationships, and information resources. The assessment identified barriers to the effective use of these resources and capabilities. Analysis of data on access to VA care and the quality of that care showed that almost all veterans live within 40 miles of a VA health facility, but fewer have access to VA specialty care. Veterans usually receive care within 14 days of their desired appointment date, but wait times vary considerably across VA facilities. VA has long played a national leadership role in measuring the quality of health care. The assessment showed that VA health care quality was as good or better on most measures compared with other health systems, but quality performance lagged at some VA facilities. VA will require more resources and capabilities to meet a projected increase in veterans' demand for VA care over the next five years. Options for increasing capacity include accelerated hiring, full nurse practice authority, and expanded use of telehealth.

Do Experiences with Medicare Managed Care Vary According to the Proportion of Same-Race/Ethnicity/Language Individuals Enrolled in One's Contract?

OBJECTIVE: To examine whether care experiences and immunization for racial/ethnic/language minority Medicare beneficiaries vary with the proportion of same-group beneficiaries in Medicare Advantage (MA) contracts. DATA SOURCES/STUDY SETTING: Exactly 492,495 Medicare beneficiaries responding to the 2008-2009 MA Consumer Assessment of Healthcare Providers and Systems (CAHPS) Survey. DATA COLLECTION/EXTRACTION METHODS: Mixed-effect regression models predicted eight CAHPS patient experience measures from self-reported race/ethnicity/language preference at individual and contract levels, beneficiary-level case-mix adjustors, along with contract and geographic random effects. PRINCIPAL FINDINGS: As a contract's proportion of a given minority group increased, overall and non-Hispanic, white patient experiences were poorer on average; for the minority group in question, however, high-minority plans may score as well as low-minority plans. Spanish-preferring Hispanic beneficiaries also experience smaller disparities relative to non-Hispanic whites in plans with higher Spanish-preferring proportions. CONCLUSIONS: The tendency for high-minority contracts to provide less positive patient experiences for others in the contract, but similar or even more positive patient experiences for concentrated minority group beneficiaries, may reflect cultural competency, particularly language services, that partially or fully counterbalance the poorer overall quality of these contracts. For some beneficiaries, experiences may be just as positive in some high-minority plans with low overall scores as in plans with higher overall scores.

Monitoring Cancer Outcomes Across the Continuum: Data Synthesis and Analysis for the District of Columbia.

This article synthesizes and analyzes available data regarding cancer-related outcomes among District of Columbia residents, highlighting key findings and data gaps across the continuum of cancer prevention, treatment, and outcomes and noting variability across subgroups of District residents. Data sources used in this report include the Behavioral Risk Factor Surveillance System, the National Cancer Database, the Centers for Disease Control and Prevention and National Cancer Institute Wide-Ranging Online Data for Epidemiologic Research database, and the American Community Survey. The findings reveal disparities in cancer-related outcomes between black and white District residents across the continuum. First, black District residents are more likely than white residents to be uninsured. Lack of insurance is associated with lower rates of routine cancer screening among asymptomatic patients and may delay care for patients experiencing early symptoms of cancer. In addition, the rate of smoking is significantly higher, and the rate of exercise is significantly lower, among black District residents than among white residents, placing black residents at higher risk of the most common cancers. Limitations in general access to health care, in primary and secondary prevention, and in access to cancer-related treatment all likely contribute to dramatically higher cancer incidence and mortality among black residents of the District than among white residents.

Computational modeling and multilevel cancer control interventions.

This chapter presents an overview of computational modeling as a tool for multilevel cancer care and intervention research. Model-based analyses have been conducted at various "beneath the skin" or biological scales as well as at various "above the skin" or socioecological levels of cancer care delivery. We review the basic elements of computational modeling and illustrate its applications in four cancer control intervention areas: tobacco use, colorectal cancer screening, cervical cancer screening, and racial disparities in access to breast cancer care. Most of these models have examined cancer processes and outcomes at only one or two levels. We suggest ways these models can be expanded to consider interactions involving three or more levels. Looking forward, a number of methodological, structural, and communication barriers must be overcome to create useful computational models of multilevel cancer interventions and population health.

Effects of direct-to-consumer advertising and clinical guidelines on appropriate use of human papillomavirus DNA tests.

BACKGROUND: Both clinical guidelines and direct-to-consumer (DTC) advertising influence the use of new health care technologies, but little is known about their relative effects. The introduction of a cervical cancer screening test in 2000 offered a unique opportunity to assess the 2 strategies. OBJECTIVE: To evaluate the effects of clinical guidelines and a targeted DTC advertising campaign on overall and appropriate use of human papillomavirus (HPV) DNA tests. RESEARCH DESIGN: Quasi-experimental study using difference-in-differences analysis. Data were MarketScan private insurance claims for 500,000 women aged 21 to 64 enrolled at least 12 consecutive months from January 2001 through December 2005. RESULTS: Both clinical guidelines and DTC advertising were associated with increases in overall HPV DNA test use. DTC advertising was associated with a statistically significant increase in HPV DNA test use in 2 groups of DTC cities (+5.57%, P < 0.0001; +2.54%, P < 0.0001). DTC advertising was associated with comparable increases in the probability of appropriate and inappropriate use of the HPV DNA test in primary screening. Clinical guideline releases from the American College of Obstetricians and Gynecologists, and by a cosponsored panel, were associated with greater increases in HPV DNA tests for appropriate primary screening than for inappropriate primary screening (ß = 0.3347, P < 0.05 and ß = 0.4175, P < 0.01). CONCLUSIONS: DTC advertising was associated with increased overall use of a cervical cancer screening test, whereas clinical guidelines were differentially associated with increased appropriate use. These findings suggest distinct influences of consumer marketing and professional guidelines on the use of health care products and services.

Association between physician specialty and uptake of new medical technologies: HPV tests in Florida Medicaid.

BACKGROUND: It is well established that specialists often adopt new medical technologies earlier than generalists, and that racial and ethnic minority patients are less likely than White patients to receive many procedures and prescription drugs. However, little is known about the role that specialists or generalists may play in reducing racial and ethnic disparities in uptake of new medical technologies. Human papillomavirus (HPV) DNA tests, introduced as a cervical cancer screening tool in 2000, present a rich context for exploring patterns of use across patient and provider subgroups. OBJECTIVE: To identify patient characteristics and the provider specialty associated with overall and appropriate use of HPV DNA tests over time, and to examine the associations between clinical guidelines and adoption of the test in an underserved population. DESIGN: Retrospective longitudinal study using Florida Medicaid administrative claims data. PARTICIPANTS: Cervical cancer screening test claims for 415,239 female beneficiaries ages 21 to 64 from July 2001 through June 2006. MAIN MEASURES: Overall and appropriate use of HPV DNA tests. KEY RESULTS: Although minority women were initially less likely than White women to receive HPV DNA tests, test use grew more rapidly among Black and Hispanic women compared to White women. Obstetricians/gynecologists were significantly more likely than primary care providers to administer HPV DNA tests. Release of the first set of clinical guidelines was associated with a large increase in the use of HPV DNA tests (adjusted odds ratio: 2.46, p<0.0001); subsequent guidelines were associated with more modest increases. CONCLUSIONS: Uptake of new cervical cancer screening protocols can occur quickly among traditionally underserved groups and may be aided by early adoption by specialists.

Factors in quality care--the case of follow-up to abnormal cancer screening tests--problems in the steps and interfaces of care.

To achieve the benefit of cancer screening, appropriate follow-up of abnormal screening test results must occur. Such follow-up requires traversing the transition between screening detection and diagnosis, including several steps and interfaces in care. This article reviews factors and interventions associated with follow-up of abnormal tests for cervical, breast and colorectal cancers. We synthesized 12 reviews of descriptive and intervention studies published between 1980 and 2008. There was wide variability in definition of follow-up, setting, study population, and reported prevalence rates. Correlates of follow-up included patient characteristics (eg, knowledge and age), social support, provider characteristics, practice (eg, having reminders systems), community and professional norms (eg, quality measures), and policy (eg, federal programs). Effective interventions included patient education and support; delivery systems design changes, such as navigation; and information system changes, most notably patient tracking and physician reminders. Few studies focused explicitly on interfaces and steps of care, such as communication between primary care and specialists, or simultaneously targeted the multilevel factors that affect care. Future practice and research priorities should include development of clear operational definitions of the steps and interfaces related to patients, providers, and organizations; reflect evolving guidelines and new technologies; determine priorities for intervention testing; and improve measures and apply appropriate study designs.