Patient Preferences for Colorectal Cancer Screening Tests in Light of Lowering the Screening Age to 45 Years.

BACKGROUND & AIMS: In 2021, the US Preventive Services Task Force lowered the colorectal cancer (CRC) screening age to 45 years. We used conjoint analysis, a method that assesses complex decision making, to update our understanding on people's CRC screening test preferences in the context of new guidelines. METHODS: We conducted a conjoint analysis survey among unscreened individuals ≥40 years at average risk for CRC to determine the relative importance of screening test attributes in their decision making (eg, modality, effectiveness at reducing CRC risk, bowel prep). We also performed simulations to estimate the proportion of people who would prefer each US Multi-Society Task Force (MSTF) on CRC-recommended test. The analyses were stratified among those aged 40-49 years (newly or soon-to-be eligible for screening) and ≥50 years (have been eligible). RESULTS: Overall, 1000 participants completed the conjoint analysis (40-49 years, n = 456; ≥50 years, n = 544). When considering all 5 US MSTF-recommended tests, there were differences in test preferences between age groups (P = .019), and the most preferred test was a fecal immunochemical test (FIT)-fecal DNA every 3 years: 40-49 years, 34.6%; ≥50 years, 37.3%. When considering only the US MSTF tier 1 tests, most 40- to 49- (68.9%) and ≥50-year-olds (77.4%; P = .004) preferred an annual FIT over a colonoscopy every 10 years. CONCLUSIONS: Our findings suggest that more than one-third of people may want to do a FIT-fecal DNA every 3 years for their CRC screening. When only considering US MSTF tier 1 tests, three-fourths of people may prefer an annual FIT over colonoscopy. Further research examining CRC screening test preferences among broader populations is warranted to inform and enhance screening programs.

What Do Providers Want from a Pain Screening Measure Used in Daily Practice?

Objectives: We aimed to understand providers' experiences and preferences regarding several brief pain screening measures. Methods: We collected two waves of data for this analysis. Wave one: We conducted nine focus groups with multidisciplinary Department of Veterans Affairs (VA) providers. Wave two: To understand an emergent theme in wave one, we conducted 15 telephone interviews with prescribing providers where we used a semistructured guide comparing screening measures currently used in VA practices. Using content analysis of the wave two interviews, we evaluated providers' perceptions of important aspects of brief pain screening measures and reported emergent themes. Results: Five emergent themes underlie providers' perceptions of the utility of brief pain screening measures: 1) item abstractness: how bounded and concrete a patient's interpretation of an individual item is; 2) item distinctness: belief in the patient's ability to differentiate between the meaning of various items in a pain measure; 3) item anchoring: presence of a description under each response option making the meaning explicit; 4) item look-back period: the period of time over which patients are asked to remember and comment on their pain; 5) parsimony: identifying the shortest and simplest approach possible to acquire desired information. Conclusions: Overly complex or adaptive screening tools may include information that is ultimately not used by providers. Conversely, overly simplistic pain screening tools may omit information that helps providers understand the impact of pain on patients' lives. As pain is nuanced, complex, and subjective, all screening measures exhibit some limitations. No single pain measure serves all chronic pain patients, and specific contexts or settings may warrant additional specific items.

How are medical groups identified as high-performing? The effect of different approaches to classification of performance.

BACKGROUND: Payers and policy makers across the international healthcare market are increasingly using publicly available summary measures to designate providers as "high-performing", but no consistently-applied approach exists to identifying high performers. This paper uses publicly available data to examine how different classification approaches influence which providers are designated as "high-performers". METHODS: We conducted a quantitative analysis of cross-sectional publicly-available performance data in the U.S. We used 2014 Minnesota Community Measurement data from 58 medical groups to classify performance across 4 domains: quality (two process measures of cancer screening and 2 composite measures of chronic disease management), total cost of care, access (a composite CAHPS measure), and patient experience (3 CAHPS measures). We classified medical groups based on performance using either relative thresholds or absolute values of performance on all included measures. RESULTS: Using relative thresholds, none of the 58 medical groups achieved performance in the top 25% or 35% in all 4 performance domains. A relative threshold of 40% was needed before one group was classified as high-performing in all 4 domains. Using absolute threshold values, two medical groups were classified as high-performing across all 4 domains. In both approaches, designating "high performance" using fewer domains led to more groups designated as high-performers, though there was little to moderate concordance across identified "high-performing" groups. CONCLUSIONS: Classification of medical groups as high performing is sensitive to the domains of performance included, the classification approach, and choice of threshold. With increasing focus on achieving high performance in healthcare delivery, the absence of a consistently-applied approach to identify high performers impedes efforts to reliably compare, select and reward high-performing providers.

Barriers to Using Nonpharmacologic Approaches and Reducing Opioid Use in Primary Care.

BACKGROUND: Opioid prescribing for chronic pain, including the potential for over-reliance and misuse, is a public health concern. OBJECTIVE: In the context of Veterans Administration (VA) primary care team-based pain management, we aimed to understand providers' perceptions of barriers to reducing opioid use and improving the use of nonpharmacologic pain management therapies (NPTs) for chronic pain. DESIGN: A semistructured interview elucidated provider experiences with assessing and managing pain. Emergent themes were mapped to known dimensions of VA primary care access. SUBJECTS: Informants included 60 primary care providers, registered nurses, licensed practical nurses, clerks, psychologists, and social workers at two VA Medical Centers. METHODS: Nine multidisciplinary focus groups. RESULTS: Provider perceptions of barriers to reducing opioids and improving use of NPTs for patients with chronic pain clustered around availability and access. Barriers to NPT access included the following subthemes: geographical (patient distance from service), financial (out-of-pocket cost to patient), temporal (treatment time delays), cultural (belief that NPTs increased provider workload, perception of insufficient training on NPTs, perceptions of patient resistance to change, confrontation avoidance, and insufficient leadership support), and digital (measure used for pain assessment, older patients hesitant to use technology, providers overwhelmed by information). CONCLUSIONS: Decreasing reliance on opioids for chronic pain requires a commitment to local availability and provider-facing strategies that increase efficacy in prescribing NPTs. Policies and interventions for decreasing utilization of opioids and increasing use of NPTs should comprehensively consider access barriers.

A systematic review of peer-supported interventions for health promotion and disease prevention.

Prior research has examined peer programs with respect to specific peer roles (e.g.; peer support) or specific health/wellness domains (e.g.; exercise/diet), or have aggregated effects across roles and domains. We sought to conduct a systematic review that categorizes and assesses the effects of peer interventions to promote health and wellness by peer role, intervention type, and outcomes. We use evidence mapping to visually catalog and synthesize the existing research. We searched PubMed and WorldCat databases (2005 to 2015) and New York Academy of Medicine Grey Literature Report (1999 to 2016) for English-language randomized control trials. We extracted study design, study participants, type of intervention(s), peer role(s), outcomes assessed and measures used, and effects from 116 randomized controlled trials. Maps were created to provide a visual display of the evidence by intervention type, peer role, outcome type, and significant vs null or negative effects. There are more null than positive effects across peer interventions, with notable exceptions: group-based interventions that use peers as educators or group facilitators commonly improve knowledge, attitudes, beliefs, and perceptions; peer educators also commonly improved social health/connectedness and engagement. Dyadic peer support influenced behavior change and peer counseling shows promising effects on physical health outcomes. Programs seeking to use peers in public health campaigns can use evidence maps to identify interventions that have previously demonstrated beneficial effects. Those seeking to produce health outcomes may benefit from identifying the mechanisms by which they expect their program to produce these effects and associated proximal outcomes for future evaluations. PROSPERO REGISTRATION NUMBER: Although we attempted to register our protocol with PROSPERO, we did not meet eligibility criteria because we were past the data collection phase. The full PROSPERO-aligned protocol is available from the authors.

What Defines a High-Performing Health Care Delivery System: A Systematic Review.

BACKGROUND: Purchasers, payers, and policy makers are increasingly measuring and rewarding high-performing health systems, which use a variety of definitions of high performance, yet it is unclear if a consistently applied definition exists. A systematic review was conducted to determine if there is a commonly used, agreed-on definition of what constitutes a "high-performing" health care delivery system. METHODS: Searches were conducted for English-language articles defining high performance with respect to a health care system or organization in PubMed and WorldCat databases from 2005 to 2015 and the New York Academy of Medicine Grey Literature Report from 1999 to 2016. The entity/condition to which the definition was applied was extracted from included articles. The number and type of dimensions used to define high performance within and across articles was tabulated and the number and type of metrics used by performance dimension and by article was calculated. RESULTS: No consistent definition of a high-performing health care system or organization was identified. High performance was variably defined across different dimensions, including quality (93% of articles), cost (67%), access (35%), equity (26%), patient experience (21%), and patient safety (18%). Most articles used more than one dimension to define high performance (75%), but only five used five or more dimensions. The most commonly paired dimensions were quality and cost (63%). CONCLUSION: The absence of a consistent definition of what constitutes high performance and how to measure it hinders our ability to compare and reward health care delivery systems on performance, underscoring the need to develop a consistent definition of high performance.

The future as a series of transitions: qualitative study of heart failure patients and their informal caregivers.

BACKGROUND: Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning. OBJECTIVE: We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future. DESIGN: This was a cross-sectional study using qualitative methods. PARTICIPANTS: Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses. APPROACH: Participants were asked in individual, semi-structured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change. KEY RESULTS: Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition. CONCLUSIONS: Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.

'You just don't feel like your work goes recognised': healthcare worker experiences of tension related to public discourse around the COVID-19 pandemic.

OBJECTIVES: To understand the impact of public discourse and reaction around the COVID-19 pandemic on healthcare worker (HCW) experiences and well-being caring for patients with COVID-19. METHODS: We conducted 60 min in-depth interviews with 11 physicians and 12 nurses who were providing care to patients with COVID-19 in acute care settings at two health systems in the Western USA. Interviews were conducted in Spring-Summer 2022 using a semi-structured interview protocol that guided respondents through different stages of the pandemic. RESULTS: Three themes emerged from the data around providing care in the unique social context of the COVID-19 pandemic including: (1) public polarisation and disagreement with science; (2) feelings of hope and optimism during the pandemic and (3) the compounded strain of providing care within this unique social context of the pandemic. CONCLUSIONS: To prepare for future pandemics, improved public health communications and social-emotional supports for HCWs are critical to ameliorate the physical and emotional impacts related to the social context of modern US pandemic response.

Racial Differences in Treatment Intensity at the End of Life Among Older Adults with Heart Failure: Evidence from the Health and Retirement Study.

Background: Black Americans experience the highest prevalence of heart failure (HF) and the worst clinical outcomes of any racial or ethnic group, but little is known about end-of-life care for this population. Objective: Compare treatment intensity between Black and White older adults with HF near the end of life. Design: Negative binomial and logistic regression analyses of pooled, cross-sectional data from the Health and Retirement Study (HRS). Setting/Subjects: A total of 1607 U.S. adults aged 65 years and older with HF who identify as Black or White, and whose proxy informant participated in an HRS exit interview between 2002 and 2016. Measurements: We compared four common measures of treatment intensity at the end of life (number of hospital admissions, receipt of care in an intensive care unit (ICU), utilization of life support, and whether the decedent died in a hospital) between Black and White HF patients, controlling for demographic, social, and health characteristics. Results: Racial identity was not significantly associated with the number of hospital admissions or admission to an ICU in the last 24 months of life. However, Black HF patients were more likely to spend time on life support (odds ratio [OR] = 2.16, confidence interval [CI] = 1.35-3.44, p = 0.00) and more likely to die in a hospital (OR = 1.53, CI = 1.03-2.28, p = 0.04) than White HF patients. Conclusion: Black HF patients were more likely to die in a hospital and to spend time on life support than White HF patients. Thoughtful and consistent engagement with HF patients regarding treatment preferences is an important step in addressing inequities.

Testing an Intervention to Improve Health Care Worker Well-Being During the COVID-19 Pandemic: A Cluster Randomized Clinical Trial.

Importance: Stress First Aid is an evidence-informed peer-to-peer support intervention to mitigate the effect of the COVID-19 pandemic on the well-being of health care workers (HCWs). Objective: To evaluate the effectiveness of a tailored peer-to-peer support intervention compared with usual care to support HCWs' well-being at hospitals and federally qualified health centers (FQHCs) during the COVID-19 pandemic. Design, Setting, and Participants: This cluster randomized clinical trial comprised 3 cohorts of HCWs who were enrolled from March 2021 through July 2022 at 28 hospitals and FQHCs in the US. Participating sites were matched as pairs by type, size, and COVID-19 burden and then randomized to the intervention arm or usual care arm (any programs already in place to support HCW well-being). The HCWs were surveyed before and after peer-to-peer support intervention implementation. Intention-to-treat (ITT) analysis was used to evaluate the intervention's effect on outcomes, including general psychological distress and posttraumatic stress disorder (PTSD). Intervention: The peer-to-peer support intervention was delivered to HCWs by site champions who received training and subsequently trained the HCWs at their site. Recipients of the intervention were taught to respond to their own and their peers' stress reactions. Main Outcomes and Measures: Primary outcomes were general psychological distress and PTSD. General psychological distress was measured with the Kessler 6 instrument, and PTSD was measured with the PTSD Checklist. Results: A total of 28 hospitals and FQHCs with 2077 HCWs participated. Both preintervention and postintervention surveys were completed by 2077 HCWs, for an overall response rate of 28% (41% at FQHCs and 26% at hospitals). A total of 862 individuals (696 females [80.7%]) were from sites that were randomly assigned to the intervention arm; the baseline mean (SD) psychological distress score was 5.86 (5.70) and the baseline mean (SD) PTSD score was 16.11 (16.07). A total of 1215 individuals (947 females [78.2%]) were from sites assigned to the usual care arm; the baseline mean (SD) psychological distress score was 5.98 (5.62) and the baseline mean (SD) PTSD score was 16.40 (16.43). Adherence to the intervention was 70% for FQHCs and 32% for hospitals. The ITT analyses revealed no overall treatment effect for psychological distress score (0.238 [95% CI, -0.310 to 0.785] points) or PTSD symptom score (0.189 [95% CI, -1.068 to 1.446] points). Post hoc analyses examined the heterogeneity of treatment effect by age group with consistent age effects observed across primary outcomes (psychological distress and PTSD). Among HCWs in FQHCs, there were significant and clinically meaningful treatment effects for HCWs 30 years or younger: a more than 4-point reduction for psychological distress (-4.552 [95% CI, -8.067 to -1.037]) and a nearly 7-point reduction for PTSD symptom scores (-6.771 [95% CI, -13.224 to -0.318]). Conclusions and Relevance: This trial found that this peer-to-peer support intervention did not improve well-being outcomes for HCWs overall but had a protective effect against general psychological distress and PTSD in HCWs aged 30 years or younger in FQHCs, which had higher intervention adherence. Incorporating this peer-to-peer support intervention into medical training, with ongoing support over time, may yield beneficial results in both standard care and during public health crises. Trial Registration: ClinicalTrials.gov Identifier: NCT04723576.

"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.

Barriers and Facilitators to Home- and Community-Based Services Access for Persons With Dementia and Their Caregivers.

OBJECTIVES: The United States has seen increasing shifts toward home- and community-based services (HCBS) in place of institutional care for long-term services and supports. However, research has neglected to assess whether these shifts have improved access to HCBS for persons with dementia. This paper identifies HCBS access barriers and facilitators, and discusses how barriers contribute to disparities for persons with dementia living in rural areas and exacerbate disparities for minoritized populations. METHODS: We analyzed qualitative data from 35 in-depth interviews. Interviews were held with stakeholders in the HCBS ecosystem, including Medicaid administrators, advocates for persons with dementia and caregivers, and HCBS providers. RESULTS: Barriers to HCBS access for persons with dementia range from community and infrastructure barriers (e.g., clinicians and cultural differences), to interpersonal and individual-level barriers (e.g., caregivers, awareness, and attitudes). These barriers affect the health and quality of life for persons with dementia and may affect whether individuals can remain in their home or community. Facilitators included a range of more comprehensive and dementia-attuned practices and services in health care, technology, recognition and support for family caregivers, and culturally competent and linguistically accessible education and services. DISCUSSION: System refinements, such as incentivizing cognitive screening, can improve detection and increase access to HCBS. Disparities in HCBS access experienced by minoritized persons with dementia may be addressed through culturally competent awareness campaigns and policies that recognize the necessity of familial caregivers in supporting persons with dementia. These findings can inform efforts to ensure more equitable access to HCBS, improve dementia competence, and reduce disparities.

"It Haunts Me": Impact of COVID-19 Deaths on Frontline Clinicians In Acute Care Settings-A Qualitative Study.

BACKGROUND: The COVID-19 pandemic created unprecedented conditions for clinicians providing end-of-life care in acute care settings, yet almost 2 years since the start of the pandemic, little is known about its impact on clinicians. OBJECTIVES: To qualitatively explore how clinicians experienced their role as they cared for dying patients with COVID-19 during the pandemic and the impact of these experiences on their lives as health care professionals. METHODS: In-depth, hour-long interviews were conducted by phone in the spring of 2022 at a single time point with 23 physicians and nurses in critical care and emergency department settings from 2 health systems in California. The goal was to elicit perspectives on experiences with end-of-life care and the long-term impact of these experiences. Clinicians were asked to reflect on the different stages of the pandemic, and interviews were analyzed using a thematic analysis. RESULTS: The interviews highlighted 2 primary themes around provision of end-of-life care during the COVID-19 pandemic. First, clinicians described challenges around their clinical duties of providing care to dying patients, which included decision-making dilemmas and professionalism challenges. Second, clinicians described the emotional aspects around end-of-life care situations they experienced, including communication with family members, "being patients' family members" at the end of life, and various degrees of meaning-making and remembrance of these experiences. CONCLUSIONS: The findings highlight the sustained and cumulative emotional challenges and burden clinicians are still shouldering more than 2 years after the start of the pandemic.

Syndromic Surveillance 2.0: Emerging Global Surveillance Strategies for Infectious Disease Epidemics.

The U.S. Army has a long history of preventing, detecting, and treating infectious diseases. Like other organizations and agencies involved in public health, the Army is increasingly interested in syndromic surveillance strategies-those designed to identify outbreaks before clinical data are available. Researchers use various methods to identify surveillance strategies across the globe, investigate these strategies' benefits and limitations, and recommend actions to aid the Army in their efforts to detect emerging epidemics and pandemics.

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.

Missed opportunities for advance care planning communication during outpatient clinic visits.

BACKGROUND: Early provider-patient communication about future care is critical for patients with heart failure (HF); however, advance care planning (ACP) discussions are often avoided or occur too late to usefully inform care over the course of the disease. OBJECTIVE: To identify opportunities for physicians to engage in ACP discussions and to characterize physicians' responses to these opportunities. DESIGN: Qualitative study of audio-recorded outpatient clinic visits. PARTICIPANTS: Fifty-two patients ≥ 65 years recently hospitalized for HF with one or more post-discharge follow-up outpatient visits, and their physicians (n = 44), at two Veterans Affairs Medical Centers. APPROACH: Using content analysis methods, we analyzed and coded transcripts of outpatient follow-up visits for 1) patient statements pertaining to their future health or their future physical, psychosocial and spiritual/existential care needs, and 2) subsequent physician responses to patient statements, using an iterative consensus-based coding process. RESULTS: In 13 of 71 consultations, patients expressed concerns, questions, and thoughts regarding their future care that gave providers opportunities to engage in an ACP discussion. The majority of these opportunities (84%) were missed by physicians. Instead, physicians responded by terminating the conversation, hedging their responses, denying the patient's expressed emotion, or inadequately acknowledging the sentiment underlying the patient's statement. CONCLUSIONS: Physicians often missed the opportunity to engage in ACP despite openers patients provided that could have prompted such discussions. Communication training efforts should focus on helping physicians identify patient openers and providing a toolbox to encourage appropriate physician responses; in order to successfully leverage opportunities to engage in ACP discussions.

Impact of comorbidity on mortality among older persons with advanced heart failure.

BACKGROUND: Care for patients with advanced heart failure (HF) has traditionally focused on managing HF alone; however, little is known about the prevalence and contribution of comorbidity to mortality among this population. We compared the impact of comorbidity on mortality in older adults with HF with high mortality risk and those with lower mortality risk, as defined by presence or absence of a prior hospitalization for HF, respectively. METHODS: This was a retrospective cohort study (2002-2006) of 18,322 age-matched and gender-matched Medicare beneficiaries. We used the baseline year of 2002 to ascertain HF hospitalization history, in order to identify beneficiaries at either high or low risk of future HF mortality. We calculated the prevalence of 19 comorbidities and overall comorbidity burden, defined as a count of conditions, among both high and low risk beneficiaries, in 2002. Proportional hazards regressions were used to determine the effect of individual comorbidity and comorbidity burden on mortality between 2002 and 2006 among both groups. RESULTS: Most comorbidities were significantly more prevalent among hospitalized versus non-hospitalized beneficiaries; myocardial infarction, atrial fibrillation, kidney disease (CKD), chronic obstructive pulmonary disease (COPD), and hip fracture were more than twice as prevalent in the hospitalized group. Among hospitalized beneficiaries, myocardial infarction, diabetes, COPD, CKD, dementia, depression, hip fracture, stroke, colorectal cancer and lung cancer were each significantly associated with increased hazard of dying (hazard ratios [HRs]: 1.16-1.93), adjusting for age, gender and race. The mortality risk associated with most comorbidities was higher among non-hospitalized beneficiaries (HRs: 1.32-3.78). CONCLUSIONS: Comorbidity confers a significantly increased mortality risk even among older adults with an overall high mortality risk due to HF. Clinicians who routinely care for this population should consider the impact of comorbidity on outcomes in their overall management of HF. Such information may also be useful when considering the risks and benefits of aggressive, high-intensity life-prolonging interventions.

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.

A novel Scale to Assess Palliative Care Patients' Experience of Feeling Heard and Understood.

CONTEXT: Patient experience of palliative care serves as an important indicator of quality and patient-centeredness. OBJECTIVES: To develop a novel patient-reported scale measuring ambulatory palliative care patients' experience of feeling heard and understood by their providers. METHODS: We used self-reported patient experience data collected via mixed-mode survey administration. We conducted an exploratory factor analysis (EFA) and an expert panel ranking exercise to reduce the 10-item set based on underlying dimensionality. We then used item response theory (IRT) to calibrate remaining items based on psychometric properties and test information and precision. We considered item-level fit and examined the standardized local dependence chi-square statistics. We evaluated candidate items for differential item functioning by survey mode. We evaluated the test-retest reliability and validity of the final scale. RESULTS: The EFA yielded a single factor (9/10 items had loadings > 0.80 on the single factor). We removed two items with the lowest factor loadings and ranked by the expert panel as being least reflective of the overall construct. IRT calibration of the remaining eight items showed high slopes (range 2.66 - 5.18); location parameters were all negative (range -0.90 - -0.36). We removed two more items based on local dependence indices and item-level fit. Combining psychometric information with the expert ratings we established the final 4-item scale, which was reliable (Cronbach's alpha = 0.84; polychoric correlation coefficient = 0.72) and had good convergent validity. CONCLUSIONS: This novel multi-item Feeling Heard and Understood scale can be used to measure and improve ambulatory palliative care patient experience.

Incorporating the Patient and Caregiver Voice in Palliative Care Quality Measure Development.

CONTEXT: Despite rapid growth in outpatient palliative care, we lack an understanding of patient and caregiver experiences of care received in this context. OBJECTIVES: As part of a national effort to develop palliative care quality metrics for use in accountability programs, we sought to develop survey items assessing patients' experiences of outpatient palliative care, incorporating the patient's voice. METHODS: We conducted 25 one-hour telephone cognitive interviews using a convenience sample of outpatient palliative care patients and caregivers to cognitively test survey items. Guided by a semi-structured protocol, we assessed the comprehensibility, ambiguity, and adaptability of survey instructions and specific items/response options. RESULTS: Participants generally understood the intended meaning of the question content. Some participants struggled with the stated time period of three months as a reference period for reporting their experiences. While some expressed preferences for question wording, no clear patterns emerged across participants. CONCLUSION: In general, question wording and response options did not present challenges to understanding content. Respondents ascribed a variety of meanings to the concepts, validating that the measures capture a range of experiences. However, the referenced timeframe of three months was more difficult to answer for some questions than others. Implications for research, policy or practice: Based on the findings from the cognitive testing, the survey items are being tested as part of a national study to understand the quality of care for patients. These measures may be used in the future by Medicare to help outpatient palliative care programs improve their care.