The Association of Unmet Palliative Care Needs and Physical Frailty With Clinical Outcomes: A Prospective Study of Adults With Heart Failure.

BACKGROUND: People with heart failure, particularly those who are physically frail, experience complex needs that can be addressed by palliative care (PC). However, we have a limited understanding of how the intersection of unmet PC needs and physical frailty contributes to health-related quality of life (HRQOL) and risk for hospitalization or mortality. OBJECTIVE: In this study, we sought to examine the association of unmet PC needs and physical frailty with clinical outcomes (baseline HRQOL and hospitalizations or mortality at 6 months). METHODS: We recruited a convenience sample of community-dwelling persons with heart failure from an urban hospital system who were older than 50 years and hospitalized in the last year. We measured physical frailty using the FRAIL scale (nonfrail, 0-2; frail, 3-5), PC needs using the Integrated Palliative Outcome Scale (range, 0-58; higher scores indicating higher needs), and HRQOL using the Kansas City Cardiomyopathy Questionnaire (range, 0-100; higher scores indicate higher HRQOL). We performed multivariable linear regression to test the relationships between physical frailty, PC needs, and HRQOL, and multivariable logistic regression for associations with all-cause 6-month hospitalization or mortality. We also performed an exploratory analysis of 4 PC needs/frailty groups (high PC needs/frail, high PC needs/nonfrail, low PC needs/frail, low PC needs/nonfrail) with outcomes. RESULTS: In our overall sample (n = 298), mean (SD) age was 68 (9.8) years, 37% were women (n = 108), 28% identified as Black/African American (n = 84), and 65% had heart failure with preserved ejection fraction (n = 194). Mean PC needs score was 19.7, and frail participants (n = 130, 44%) had a significantly higher mean PC needs score than nonfrail participants (P < .001). Those with higher PC needs (Integrated Palliative Care Outcome Scale ≥ 20) had significantly worse HRQOL (P < .001) and increased odds of hospitalization or mortality (odds ratio, 2.5; P < .01) compared with those with lower PC needs, adjusting for covariates. Physically frail participants had significantly worse HRQOL (P < .001) and higher odds of hospitalization or mortality at 6 months (odds ratio, 2.6; P < .01) than nonfrail participants, adjusting for covariates. In an exploratory analysis, physically frail participants with high PC needs had the lowest HRQOL score, with an average score of 28.6 points lower (P < .001) and 4.6 times higher odds of hospitalization or mortality (95% confidence interval, 2.03-10.43; P < .001) than low-needs/nonfrail participants. CONCLUSION: Higher unmet PC needs and physical frailty, separately and in combination, were associated with lower HRQOL and higher odds of hospitalization or mortality. Self-reported PC needs and physical frailty assessment in clinical settings may improve identification of patients at the highest risk for poor HRQOL and hospitalization or mortality amenable to PC intervention.

Implementation and Effectiveness of Integrating Palliative Care Into Ambulatory Care of Noncancer Serious Chronic Illness: Mixed Methods Review and Meta-Analysis.

PURPOSE: To perform a mixed methods review to evaluate the effectiveness and implementation of models for integrating palliative care into ambulatory care for US adults with noncancer serious chronic illness. METHODS: We searched 3 electronic databases from January 2000 to May 2020 and included qualitative, mixed methods studies and randomized and nonrandomized controlled trials. For each study, 2 reviewers abstracted data and independently assessed for quality. We conducted meta-analyses as appropriate and graded strength of evidence (SOE) for quantitative outcomes. RESULTS: Quantitative analysis included 14 studies of 2,934 patients. Compared to usual care, models evaluated were not more effective for improving patient health-related quality of life (HRQOL) (standardized mean difference [SMD] of 4 of 8 studies, 0.19; 95% CI, ‒0.03 to 0.41) (SOE: moderate) or for patient depressive symptom scores (SMD of 3 of 9 studies, ‒0.09; 95% CI, ‒0.35 to 0.16) (SOE: moderate). Models might have little to no effect on patient satisfaction (SOE: low) but were more effective for increasing advance directive (AD) documentation (relative risk, 1.62; 95% CI, 1.35 to 1.94) (SOE: moderate). Qualitative analysis included 5 studies of 146 patients. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were considered barriers to implementation. CONCLUSION: Models might have little to no effect on decreasing overall symptom burden and were not more effective than usual care for improving HRQOL or depressive symptom scores but were more effective for increasing AD documentation. Additional research should focus on identifying and addressing characteristics and implementation factors critical to integrating models to improve ambulatory, patient-centered outcomes.

A double-edged sword: The effects of social network ties on job satisfaction in primary care organizations.

BACKGROUND: Social ties between health care workers may be an important driver of job satisfaction; however, research on this topic is limited. PURPOSE: We used social network methods to collect data describing two types of social ties, (a) instrumental ties (i.e., exchange of advice that enables work) and (b) expressive ties (i.e., exchange of social support), and related those ties to workers' job satisfaction. METHODOLOGY: We surveyed 456 clinicians and staff at 23 primary care practices about their social networks and workplace attitudes. We used multivariable linear regression to estimate the relationship between an individual's job satisfaction and two network properties: (a) eigenvector centrality (a measure of the importance of an individual in a network) and (b) ego network density (a measure of the cohesiveness of an individual's network). We examined this relationship for both instrumental and expressive ties. RESULTS: Individuals who were more central in the expressive network were less satisfied in their job, b = -0.40 (0.19), p < .05, whereas individuals who had denser instrumental networks were more satisfied in their job, b = 0.49 (0.21), p < .05. CONCLUSION: Workplace relationships affect worker well-being. Centrality in an expressive network may require greater emotional labor, increasing workers' risk for job dissatisfaction. On the other hand, a dense instrumental network may promote job satisfaction by strengthening workers' access to full information, supporting competence and confidence. PRACTICE IMPLICATIONS: Efforts to increase job satisfaction should consider both the positive and negative effects of social networks on workers' sense of well-being.

Pain Experiences of Adults With Sickle Cell Disease and Hematopoietic Stem Cell Transplantation: A Qualitative Study.

OBJECTIVE: Despite increasing use of hematopoietic stem cell transplantation (HSCT) for adults with sickle cell disease (SCD), little is known about pain management experiences throughout this process. The objective of this study was to explore patients' experiences with pain and pain management during and after HSCT for SCD. METHODS: We conducted a qualitative interview study with 10 patients who underwent HSCT for SCD. We transcribed interviews verbatim and inductively identified codes. We used thematic analysis alongside a constant comparative method to develop and refine a codebook that aided in the identification of themes. RESULTS: Four key themes emerged. (1) The pain trajectory: patients described a fluctuating course of pain during HSCT, which often extended long afterwards and impacted all aspects of life, particularly affected by pre-HSCT experiences; (2) The role of opioids-a double-edged sword: patients described opioids as reducing pain but insufficiently to balance significant adverse effects and burden; (3) Patient-centered decision making in pain management: patients described insufficient agency in decisions about opioid use and weaning; and (4) Consequences of health-related stigma: patients described experiences with stigma, mainly related to opioid use and weaning, as similar to pre-HSCT. CONCLUSIONS: From the perspective of patients who have undergone HSCT for SCD, clinicians should use a patient-centered approach, integrating non-opioid approaches into pain management, particularly psychosocial support. As transplant for SCD becomes increasingly available, incorporating patient perspectives may improve health care delivery and overall patient experiences.

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' perspectives of the transplant experience across the trajectory from screening through early post-transplant follow-up and elicited unmet needs. Major themes included: (1) perception of choice, (2) act of giving back, (3) burdens of donation, (4) anticipated health benefit to parent, and (5) impact of donation on parent/child relationship. The majority of participants described high family functioning, but strain was also evident. Family functioning rarely was reported as affecting the decision to donate, with all donors expressing a sense of obligation. Participants were overwhelmingly satisfied with their decision and the ability to give back to their parent. Suggestions for the health care team to improve the donation experience focused on increased education about potential delays in screening, better description of possible complications for recipients, and provision of emotional support following donation.

Sharing in care: engaging care partners in the care and communication of breast cancer patients.

PURPOSE: Family is often overlooked in cancer care. We developed a patient-family agenda setting intervention to engage family in cancer care communication. METHODS: We conducted a pilot randomized controlled trial (NCT03283553) of patients on active treatment for breast cancer and their family "care partner." Intervention dyads (n = 69) completed a self-administered checklist to clarify care partner roles, establish a shared visit agenda, and facilitate MyChart patient portal access. Control dyads (n = 63) received usual care. We assessed intervention acceptability and initial effects from post-visit surveys and MyChart utilization at 6 weeks. RESULTS: At baseline, most patients (89.4%) but few care partners (1.5%) were registered for MyChart. Most patients (79.4%) wanted their care partner to have access to their records and 39.4% of care partners reported accessing MyChart. In completing the checklist, patients and care partners endorsed active communication roles for the care partner and identified a similar visit agenda: most (> 90%) reported the checklist was easy, useful, and recommended it to others. At 6 weeks, intervention (vs control) care partners were more likely to be registered for MyChart (75.4% vs 1.6%; p < 0.001), to have logged in (43.5% vs 0%; p < 0.001) and viewed clinical notes (30.4% vs 0%; p < 0.001), but were no more likely to exchange direct messages with clinicians (1.5% vs 0%; p = 0.175). No differences in patients' MyChart use were observed, but intervention patients more often viewed clinical notes (50.7% vs 9.5%; p < 0.001). CONCLUSIONS: A patient-family agenda setting intervention was acceptable and affected online practices of cancer patients and care partners.

Contrasting characteristics of daily physical activity in older adults by cancer history.

BACKGROUND: Using objectively collected physical activity (PA) data from the Baltimore Longitudinal Study of Aging, the authors tested whether patterns of daily activity and sedentary time differed by cancer survivorship in older adults. METHODS: In total, 659 participants (mean age ± standard deviation, 71 ± 10 years; 51% women) who had self-reported information on cancer history were instructed to wear an accelerometer for 7 consecutive days. Accelerometer data were summarized into: 1) PA volume and 2) activity fragmentation (interrupted activity), expressed as both continuous and as dichotomized (low and high) variables. Participants were categorized into 4 groups by cross-classification of dichotomous PA volume and fragmentation. Multiple regression models were used to estimate differences in PA patterns by cancer history. RESULTS: Cancer survivors averaged 0.12 fewer log-transformed activity counts per day (standard error, 0.05; P = .02) than individuals who reported no history of cancer after adjusting for demographics, behavioral factors, and comorbidities. Although fragmentation did not differ by cancer survivorship in the continuous model (P = .13), cancer survivorship was associated with 77% greater odds (odds ratio, 1.77; 95% confidence interval, 1.11-2.82) of having high (vs low) fragmentation and 94% greater odds (odds ratio, 1.94; 95% confidence interval, 1.13-3.33) of having combined low PA/high fragmentation (vs high PA/low fragmentation) relative to those with no cancer history. CONCLUSIONS: The current findings suggest that cancer survivors engage in lower total daily PA and that they perform this activity in a more fragmented manner compared with adults without a history of cancer. These results may reflect the onset and progression of a low-activity phenotype that is more vulnerable to heightened levels of fatigue and functional decline with aging.

Fatigability and endurance performance in cancer survivors: Analyses from the Baltimore Longitudinal Study of Aging.

BACKGROUND: Fatigue is prevalent and distressing among cancer survivors, but its subjective nature makes it difficult to identify. Fatigability, defined as task-specific fatigue, and endurance performance may be useful supplemental measures of functional status in cancer survivors. METHODS: Fatigability, endurance performance, and cancer history were assessed every 2 years in Baltimore Longitudinal Study of Aging participants between 2007 and 2015. Fatigability was defined according to the Borg rating of perceived exertion scale after a 5-minute, slow treadmill walk; and endurance performance was calculated according to the ability and time to complete a fast-paced, 400-meter walk. The association between cancer history, fatigability, and endurance performance was evaluated using longitudinal analyses adjusted for age, sex, body mass index, and comorbidities. RESULTS: Of 1665 participants, 334 (20%) reported a history of cancer. A combination of older age (>65 years) and a history of cancer was associated with 3.8 and 8.6 greater odds of high perceived fatigability and poor endurance, respectively (P < .01). Older adults with and without a history of cancer walked 42 and 23 seconds slower than younger adults without a history of cancer, respectively (P < .01). The median times to the development of high fatigability and poor endurance were shorter among those who had a history of cancer compared with those who had no history of cancer (P < .01). CONCLUSIONS: The current findings suggest that a history of cancer is associated with fatigability and poor endurance and that this effect is significantly greater in older adults. Evaluating the effects of cancer and age on fatigability may illuminate potential pathways and targets for future interventions. Cancer 2018;124:1279-87. © 2018 American Cancer Society.

Association of Magnet Status and Nurse Staffing With Improvements in Patient Experience With Hospital Care, 2008-2015.

BACKGROUND: Little is known about the longitudinal association of hospital Magnet status (an indicator of nursing excellence) and nurse-staffing level with inpatient care experience. OBJECTIVES: To examine temporal trends in hospital performance on patient experience measured using the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey and the association of these trends with Magnet status and nurse-staffing level. RESEARCH DESIGN: Longitudinal study of hospital-level data from the HCAHPS survey, the American Hospital Association Annual Survey, and the American Nurses Credentialing Center. Growth curve models were used for the analysis of longitudinal associations. SUBJECTS: A total of 26,752 hospital-year observations from 3614 US hospitals that collected at least 3 years of HCAHPS data from patients discharged between 2008 and 2015. MEASURES: Dependent variables were 7 HCAHPS measures. Independent variables included linear and quadratic time terms, hospital Magnet status, and nurse-staffing level. RESULTS: There were significant improvements (P<0.001) in all 7 HCAHPS measures, but the trends were nonlinear; the improvement rates have decreased over time. Magnet hospitals and hospitals with more favorable nurse staffing consistently performed better on HCAHPS but did not improve faster than other hospitals during the study period. In subgroup analyses, HCAHPS scores did not improve for hospitals after they received Magnet recognition during the period from 2009 to 2015. CONCLUSIONS: The hospital organizational attributes that lead to Magnet recognition or better nurse staffing may be associated with higher performance on HCAHPS. Magnet status and favorable nurse staffing may be markers of hospital commitment to better patient-centered care.

Implementation of the World Health Organization Trauma Care Checklist Program in 11 Centers Across Multiple Economic Strata: Effect on Care Process Measures.

BACKGROUND: Trauma contributes more than ten percent of the global burden of disease. Initial assessment and resuscitation of trauma patients often requires rapid diagnosis and management of multiple concurrent complex conditions, and errors are common. We investigated whether implementing a trauma care checklist would improve care for injured patients in low-, middle-, and high-income countries. METHODS: From 2010 to 2012, the impact of the World Health Organization (WHO) Trauma Care Checklist program was assessed in 11 hospitals using a stepped wedge pre- and post-intervention comparison with randomly assigned intervention start dates. Study sites represented nine countries with diverse economic and geographic contexts. Primary end points were adherence to process of care measures; secondary data on morbidity and mortality were also collected. Multilevel logistic regression models examined differences in measures pre- versus post-intervention, accounting for patient age, gender, injury severity, and center-specific variability. RESULTS: Data were collected on 1641 patients before and 1781 after program implementation. Patient age (mean 34 ± 18 vs. 34 ± 18), sex (21 vs. 22 % female), and the proportion of patients with injury severity scores (ISS) ≥ 25 (10 vs. 10 %) were similar before and after checklist implementation (p > 0.05). Improvement was found for 18 of 19 process measures, including greater odds of having abdominal examination (OR 3.26), chest auscultation (OR 2.68), and distal pulse examination (OR 2.33) (all p < 0.05). These changes were robust to several sensitivity analyses. CONCLUSIONS: Implementation of the WHO Trauma Care Checklist was associated with substantial improvements in patient care process measures among a cohort of patients in diverse settings.

Asking questions of a palliative care nurse practitioner on a pancreatic cancer website.

OBJECTIVE: Increasing evidence demonstrates the benefits of online cancer interventions but very little about the needs of those with pancreatic cancer or interaction with online providers. Our study was done to (1) see how many people would visit a webpage where they could interact with a palliative care nurse practitioner (PCNP), (2) see how many would ask the PCNP questions, (3) determine the type of questions, and (4) obtain feedback regarding the usefulness of the webpage. METHOD: Mixed-methods descriptive design. RESULTS: There were 2174 visits to the webpage, and a total of 84 participants sent 110 questions/comments. Some 28 (33%) were people worried that they might have pancreatic cancer. Most questions (59, 53%) had to do with palliative care issues, with the largest subgroup (26, 23%) involving psychological concerns. A total of 39 completed an online survey and were relatives (20, 52%), or patients (17, 44%). They rated the webpage at 3.3/4 as being helpful at learning about the physical symptoms/treatments of pancreatic cancer, at 3.1/4 for learning about emotional issues, at 3/4 for learning about palliative care, at 2.8/4 for learning about hospice, and at 3.3/4 for reading other people's questions. SIGNIFICANCE OF RESULTS: The PCNP webpage was a helpful resource. Most asking questions were worried about having or getting pancreatic cancer. More research is needed into online providers, interventions, and conducting research online.

Patient-reported quality of care and pain severity in cancer.

OBJECTIVE: Despite treatment availability, many cancer patients experience severe pain. Although patient assessments of care are increasingly employed to evaluate quality of care, little is known about its association with cancer symptom burden. The objective of our study was to examine the association between patient-reported quality of care and pain severity in a nationally representative cohort of cancer patients. METHOD: Quality of care was measured in three domains: physician communication, care coordination/responsiveness, and nursing care. Quality scores were dichotomized as optimal versus nonoptimal. Pain was measured on a scale of 0 (least) to 100 (worst). We utilized multivariable linear regression to examine the association between patient-reported quality of care and pain severity. RESULTS: The analytic sample included 2,746 individuals. Fifty and 54% of patients, respectively, rated physician communication and care coordination/responsiveness as nonoptimal; 28% rated nursing care as nonoptimal. In adjusted models, rating physician communication as nonoptimal (versus optimal) was associated with a 1.8-point higher pain severity (p = 0.018), and rating care coordination/responsiveness as nonoptimal was associated with a 2.2-point higher pain severity (p = 0.006). SIGNIFICANCE OF RESULTS: Patient-reported quality of care was significantly associated with pain severity, although the differences were small. Interventions targeting physician communication and care coordination/responsiveness may result in improved pain control for some patients.

Rapid-response systems as a patient safety strategy: a systematic review.

Rapid-response systems (RRSs) are a popular intervention in U.S. hospitals and are supported by accreditors and quality improvement organizations. The purpose of this review is to evaluate the effectiveness and implementation of these systems in acute care settings. A literature search was performed between 1 January 2000 through 30 October 2012 using PubMed, PsycINFO, CINAHL, and the Cochrane Central Register of Controlled Trials. Studies published in any language evaluating outcome changes that occurred after implementing an RRS and differences between groups using and not using an RRS (effectiveness) or describing methods used by RRSs (implementation) were reviewed. A single reviewer (checked by a second reviewer) abstracted data and rated study quality and strength of evidence. Moderate-strength evidence from a high-quality meta-analysis of 18 studies and 26 lower-quality before-and-after studies published after that meta-analysis showed that RRSs are associated with reduced rates of cardiorespiratory arrest outside of the intensive care unit and reduced mortality. Eighteen studies examining facilitators of and barriers to implementation suggested that the rate of use of RRSs could be improved.

Promoting a culture of safety as a patient safety strategy: a systematic review.

Developing a culture of safety is a core element of many efforts to improve patient safety and care quality. This systematic review identifies and assesses interventions used to promote safety culture or climate in acute care settings. The authors searched MEDLINE, CINAHL, PsycINFO, Cochrane, and EMBASE to identify relevant English-language studies published from January 2000 to October 2012. They selected studies that targeted health care workers practicing in inpatient settings and included data about change in patient safety culture or climate after a targeted intervention. Two raters independently screened 3679 abstracts (which yielded 33 eligible studies in 35 articles), extracted study data, and rated study quality and strength of evidence. Eight studies included executive walk rounds or interdisciplinary rounds; 8 evaluated multicomponent, unit-based interventions; and 20 included team training or communication initiatives. Twenty-nine studies reported some improvement in safety culture or patient outcomes, but measured outcomes were highly heterogeneous. Strength of evidence was low, and most studies were pre-post evaluations of low to moderate quality. Within these limits, evidence suggests that interventions can improve perceptions of safety culture and potentially reduce patient harm.

A systematic review of communication quality improvement interventions for patients with advanced and serious illness.

BACKGROUND: Effective communication is an interaction between two or more people that produces a desired effect and is a key element of quality of care for patients with advanced and serious illness and their family members. Suboptimal provider-patient/family communication is common, with negative effects on patient/family-centered outcomes. OBJECTIVES: To systematically review the evidence for effectiveness of communication-related quality improvement interventions for patients with advanced and serious illness and to explore the effectiveness of consultative and integrative interventions. DATA SOURCES: MEDLINE, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through December 2011 and reference list of eligible articles and reviews. STUDY ELIGIBILITY CRITERIA, PARTICIPANTS AND INTERVENTIONS: Prospective, controlled quality improvement studies in populations with life-limiting or severe life-threatening illness with a primary intervention focus of improving communication with patients and/or families. STUDY APPRAISAL AND SYNTHESIS METHODS: Two investigators independently screened and abstracted data on patient/family-centered outcomes. RESULTS: We included 20 studies; 13 (65 %) were in intensive care. We found four intervention types: (1) family meetings with the usual team (11 studies, 77 % found improvement in healthcare utilization), (2) palliative care teams (5 studies, 50 % found improvement in healthcare utilization), (3) ethics consultation (2 studies, 100 % found improvement in healthcare utilization), and (4) physician-patient communication (2 studies, no significant improvement in healthcare utilization). Among studies addressing the outcomes of patient/family satisfaction, 22 % found improvement; among studies addressing healthcare utilization (e.g., length of stay), 73 % found improvement. Results suggest that consultative interventions, as opposed to integrative ones, may be more effective, but more research is needed. LIMITATIONS: Study heterogeneity did not allow quantitative synthesis. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: Communication in the care of patients with advanced and serious illness can be improved using quality improvement interventions, particularly for healthcare utilization as an outcome. Interventions may be more effective using a consultative approach.

Measuring the quality of palliative care and supportive oncology: principles and practice.

Oncology quality measurement programs should include measures in key domains of palliative care and supportive oncology. This article describes an approach to quality measurement in these areas including the key steps of defining the quality measurement goal; identifying stakeholders and audiences; defining the population and setting (including potential characteristics of interest, such as specific conditions or disparities); and choosing the domain, target, and steps in the process of care, such as assessment and treatment. Other key steps include choosing or adapting measures that have been evaluated in other settings or are in widespread use; identifying data sources or collection needs; and considering issues of scientific acceptability, such as evidence to support process-outcome relationships. Other quality measurement considerations include the challenges of measurement, particularly in important domains such as communication and spiritual care, variation in patient preferences, or inconsistent documentation. In addition, potential unintended consequences, such as measurement burden and overemphasis of checklist care, may reduce patient-centeredness and attention to important patient concerns not addressed by quality measures.

Palliative Care Needs of Physically Frail Community-Dwelling Older Adults With Heart Failure.

CONTEXT: Physical frailty is emerging as a potential "trigger" for palliative care (PC) consultation, but the PC needs of physically frail persons with heart failure (HF) in the outpatient setting have not been well described. OBJECTIVES: This study describes the PC needs of community dwelling, physically frail persons with HF. METHODS: We included persons with HF ≥50 years old who experienced ≥1 hospitalization in the prior year and excluded those with moderate/severe cognitive impairment, hospice patients, or non-English speaking persons. Measures included the FRAIL scale (0-5: 0 = robust, 1-2 = prefrail, 3-5 = frail) and the Integrated Palliative Outcome Scale (IPOS) (17 items, score 0-68; higher score = higher PC needs). Multiple linear regression tested the association between frailty group and palliative care needs. RESULTS: Participants (N = 286) had a mean age of 68 (range 50-92) were majority male (63%) and White (68%) and averaged two hospitalizations annually. Most were physically frail (44%) or prefrail (41%). Mean PC needs (IPOS) score was 19.7 (range 0-58). On average, participants reported 5.86 (SD 4.28) PC needs affecting them moderately, severely, or overwhelmingly in the last week. Patient-perceived family/friend anxiety (58%) weakness/lack of energy (58%), and shortness of breath (47%) were the most prevalent needs. Frail participants had higher mean PC needs score (26) than prefrail (16, P < 0.001) or robust participants (11, P < 0.001). Frail participants experienced an average of 8.32 (SD 3.72) moderate/severe/overwhelming needs compared to prefrail (4.56, SD 3.77) and robust (2.39, SD 2.91) participants (P < 0.001). Frail participants reported higher prevalence of weakness/lack of energy (83%), shortness of breath (66%), and family/friend anxiety (69%) than prefrail (48%, 39%, 54%) or robust (13%, 14%, 35%) participants (P < 0.001). CONCLUSION: Physically frail people with HF have higher unmet PC needs than those who are nonfrail. Implementing PC needs and frailty assessments may help identify vulnerable patients with unmet needs requiring further assessment and follow-up.

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.

Sharing Health Care Wishes in Primary Care (SHARE) among older adults with possible cognitive impairment in primary care: Study protocol for a randomized controlled trial.

OBJECTIVE: Little is known about effective strategies to improve advance care planning (ACP) for persons with cognitive impairment in primary care, the most common setting of care. We describe a randomized controlled trial to test the efficacy of a multicomponent communication intervention, "Sharing Healthcare Wishes in Primary Care" (SHARE). PARTICIPANTS: Planned enrollment of 248 dyads of adults 80 years and older with possible cognitive impairment and their care partner, from primary care clinics at 2 Mid-Atlantic health systems. METHODS: The treatment protocol encompasses an introductory letter from the clinic; access to a designated facilitator trained in ACP; person-family agenda-setting to align perspectives about the family's role; and print education. The control protocol encompasses minimally enhanced usual care, which includes print education and a blank advance directive. Randomization occurs at the individual dyad-level. Patient and care partner surveys are fielded at baseline, 6-, 12-, and 24- months. Fidelity of interventionist delivery of the protocol is measured through audio-recordings of ACP conversations and post-meeting reports, and by ongoing monitoring and support of interventionists. OUTCOMES: The primary outcome is quality of end-of-life care communication at 6 months; secondary outcomes include ACP process measures. An exploratory aim examines end-of-life care quality and bereaved care partner experiences for patients who die by 24 months. CONCLUSIONS: Caregiver burden, clinician barriers, and impaired decisional capacity amplify the difficulty and importance of ACP discussions in the context of cognitive impairment: this intervention will comprehensively examine communication processes for this special subpopulation in a key setting of primary care. REGISTRATION: ClinicalTrials.gov: NCT04593472.

Interdisciplinary interventions that improve patient-reported outcomes in perioperative cancer care: A systematic review of randomized control trials.

INTRODUCTION: Interdisciplinary teams are often leveraged to improve quality of cancer care in the perioperative period. We aimed to identify the team structures and processes in interdisciplinary interventions that improve perioperative patient-reported outcomes for patients with cancer. METHODS: We searched PubMed, EMBASE, and CINAHL for randomized control trials published at any time and screened 7,195 articles. To be included in our review, studies needed to report patient-reported outcomes, have interventions that occur in the perioperative period, include surgical cancer treatment, and include at least one non physician intervention clinical team member: advanced practice providers, including nurse practitioners and physician assistants, clinical nurse specialists, and registered nurses. We narratively synthesized intervention components, specifically roles assumed by intervention clinical team members and interdisciplinary team processes, to compare interventions that improved patient-reported outcomes, based on minimal clinically important difference and statistical significance. RESULTS: We included 34 studies with a total of 4,722 participants, of which 31 reported a clinically meaningful improvement in at least one patient-reported outcome. No included studies had an overall high risk of bias. The common clinical team member roles featured patient education regarding diagnosis, treatment, coping, and pain/symptom management as well as postoperative follow up regarding problems after surgery, resource dissemination, and care planning. Other intervention components included six or more months of continuous clinical team member contact with the patient and involvement of the patient's caregiver. CONCLUSIONS: Future interventions might prioritize supporting clinical team members roles to include patient education, caregiver engagement, and clinical follow-up.