Background: Until recently, consumers have had limited resources to assess quality of hospices agencies, contributing to growing numbers of consumers turning to online review sites, such as Yelp. However, little is known about the content of hospice Yelp reviews and how these relate to recently available Center for Medicare and Medicaid Services' Hospice Compare (HC) site data.
Objective: To better understand what consumers report on Yelp about hospice care and explore how these areas relate to HC data.
Design: We examined 692 consumer Yelp reviews of 67 hospices in California and compared identified themes with quality measures presented on the HC site.
Setting/Subjects: We used a purposive sample of California Hospice's with Yelp reviews.
Measurements: Qualitative consumer comments about their experience with hospice care were analyzed by using a grounded theory approach.
Results: We found that overall Yelp comments were positive, however Yelp themes were more extensive and diverse than those on HC.
Conclusion: We recommend that consumers consider both HC and online review sites such as Yelp when evaluating a hospice.
Background: Studies show significant associations between the various dimensions of religiousness and end-of-life (EOL) decisions, such as individuals with high religiosity are more likely to choose aggressive care at EOL. However, these studies focused largely on smaller cancer populations. To our knowledge, there is no existing literature about the association between religiosity and EOL decisions within a national sample of older adults.
Objective: The objective of this study was to investigate the association between religiosity and advance directive (AD) completion, and among those with an AD, documented EOL care preferences, using a nationally representative sample.
Methods: This was an observational study. Descriptive statistics and logistic regression were conducted with 6051 decedents from the Health and Retirement Study using self-reported frequency of religious service attendance, importance of religion, and religious affiliation.
Measurements: The dependent variables were AD completion and care preference. The independent variables were self-reported frequency of religious service attendance, importance of religion, and religious affiliation.
Results: Protestants and Catholics had significantly lower odds of AD completion, compared with those with no religious preferences. Decedents who reported religion as very important had significantly lower odds of AD completion than decedents who said religion is not too important. Furthermore, decedents who attended religious services at least once a week, compared with those who do not attend, had significantly higher odds of completing an AD. Among those who completed an AD, neither religiosity nor religious affiliation was significantly associated with preference for prolonged care.
Conclusions: Our study demonstrates the influence religiosity has on the development of ADs, prompting seriously ill patients' religious needs to be recognized and supported. It further suggests that religious services may provide a good opportunity for promoting knowledge and completion of ADs.
Introduction: Studies show that home-based palliative care (HBPC) improves participant outcomes and satisfaction with care while also decreasing hospitalizations and emergency department visits. U.S. health care payment reforms create financial opportunities to offer HBPC. Consequently, more HBPC programs are emerging, heightening the need to evaluate their effectiveness.
Methods: This randomized, controlled trial is comparing the effectiveness of an evidence-based model of HBPC and enhanced usual primary care for participants who receive primary care from medical groups and clinics organized under an accountable care organization or Medicare Advantage plan. Palliative care services are reimbursed by our partnering health plan provider. The five-year trial will enroll 1155 seriously ill participants (and ~884 of their caregivers) with heart failure, chronic obstructive pulmonary disease, or advanced cancer. We are collecting data via telephone surveys with participants at baseline and one and two months postenrollment and with caregivers at baseline, one and two months postenrollments, and following the death of a loved one. We are collecting participant-reported outcome measures of pain, symptoms, anxiety, depression, participant-provider communication, and hope. Caregiver outcome measures include caregiver burden, communication with providers, anxiety, and depression. Additional outcomes are participant survival time and participants' emergency department visits and hospitalizations.
Study Implementation: Challenges and Contributions: Our research team has encountered several significant challenges in early study implementation. These include engaging primary care providers in the study and coordinating logistics with a health plan. Both challenges have contributed to a lag in participant enrollment. Despite these challenges, our study holds tremendous promise to accelerate adoption and spread of an evidence-based HBPC model across the country.
Background: The lack of consumer knowledge and misconception of services could impede requests for and acceptance of palliative care. YouTube has been widely used for health information dissemination.
Objective: To explore the availability and characteristics of palliative care educational videos on YouTube and determine how palliative care is portrayed in these videos.
Methods: Keyword search and snowball methods were used to identify palliative care videos on YouTube. A structured data collection protocol was developed to record characteristics of a video. Descriptive analysis was used to describe the video features; logistic regression was conducted to determine the association between video characteristics and number of views per day.
Results: A total of 833 videos were screened; 84 met criteria for analysis. The most prominent video styles were providing palliative care information (85%) and personal testimony (50%). One-third were uploaded by hospice/palliative care services or medical organizations, while another one-third by advocacy organizations. More than two-thirds mentioned “end-of-life” and 35% mentioned “hospice.” Physicians most frequently appeared and served as protagonists. Protagonists were primarily female (71.0%), aged 18–64 years (81.7%), and white (90.3%). Compared with videos uploaded by health care agencies, those uploaded by advocacy organizations had 6.41 times higher odds of having more than one view per day (p = 0.002).
Conclusion: Online videos may not provide accurate and appropriate information on palliative care. There is minimal ethnic diversity in terms of physician and family representation. More research is needed to determine the effectiveness of these videos in improving consumer knowledge of palliative care.
CONTEXT: Lack of knowledge or misconceptions about palliative care (PC) can serve as barriers to accessing palliative care for seriously ill patients. Although self-reported rates of PC knowledge have been increasing, little is known about how self-reports relate to actual PC knowledge.
OBJECTIVE: To determine the prevalence of PC knowledge and the extent to which those reporting they are knowledgeable about PC have actual knowledge of basic PC principals.
METHODS: We used the Health Information National Trends Survey 5, Cycle 2, a nationally representative dataset to describe the prevalence of self-report PC knowledge. We conducted chi-square to compare self-rated PC knowledge level with actual knowledge. Finally, we ran a logistic regression to examine if self-reported knowledge level, age, and cancer history were associated with actual PC knowledge.
RESULTS: About 34% of participants self-reported having at least some knowledge of PC, and 41% of those reporting familiarities with PC were able to answer all three basic PC questions correctly. Rates of correct responses for cancer patients were similar (42%) to the general sample and older adults were lower (35%). Compared with those with less than a high school education, people with a bachelor's degree and post-baccalaureate degree had higher odds ratio (21.07, 23.07 respectively) of actual understanding of PC.
CONCLUSIONS: We found that self-reported PC knowledge may not reflect actual PC knowledge. Physicians should carefully explain PC when introducing it to patients. Additionally, this PC information should be provided at a low literacy level to ensure widespread understanding of the service.
Studies have documented ethnic differences in advance directive (AD) completion, with lower rates in minority groups. Of those with ADs, blacks are more likely than whites to prefer aggressive care, but little is known about how these differences in preferences have changed over time in ethnic groups. This nationally representative study aimed to investigate whether these differences in AD development persisted after adjusting for important confounding variables. Year of death was analyzed to see how AD completion changed over time within ethnic groups, and for those with an AD, the association between these factors and opting for aggressive care was investigated. Data from the 2000 to 2012 Health and Retirement Study (HRS) exit interviews from 7,177 decedents were used. Analyses included logistic regression to determine the relationship between ethnicity and AD completion and preferences for aggressive care and how it changed over time in ethnic groups. Forty-six percent of decedents had completed an AD (whites 51.7%, Hispanics 18.0%, blacks 15.0%). Of blacks completing an AD, 23.8% elected prolonged care, compared with 13.3% of Hispanics and 3.3% of whites. Logistic regression revealed that blacks 75% lower odds of completing an AD and Hispanics had 70% lower odds. Model covariates had a small influence on ethnic differences, although in examining the change in AD completion over time, the odds of having an AD increased with each subsequent death year for blacks and whites but not Hispanics. Additional research is needed to investigate the effect of cultural differences in AD completion rates of ethnic minority groups to ensure that preferences are honored in the clinical setting.