Patient and Provider Perspectives About the Use of Patient-Generated Health Data During Pregnancy: Qualitative Exploratory Study.

BACKGROUND: There is increasing interest in using patient-generated health data (PGHD) to improve patient-centered care during pregnancy. However, little research has examined the perspectives of patients and providers as they report, collect, and use PGHD to inform obstetric care. OBJECTIVE: This study aims to explore the perspectives of patients and providers about the use of PGHD during pregnancy, including the benefits and challenges of reporting, collecting, and using these data, as well as considerations for expanding the use of PGHD to improve obstetric care. METHODS: We conducted one-on-one interviews with 30 pregnant or postpartum patients and 14 health care providers from 2 obstetrics clinics associated with an academic medical center. Semistructured interview guides included questions for patients about their experience and preferences for sharing PGHD and questions for providers about current processes for collecting PGHD, opportunities to improve or expand the collection of PGHD, and challenges faced when collecting and using this information. Interviews were conducted by phone or videoconference and were audio recorded, transcribed verbatim, and deidentified. Interview transcripts were analyzed deductively and inductively to characterize and explore themes in the data. RESULTS: Patients and providers described how PGHD, including physiologic measurements and experience of symptoms, were currently collected during and between in-person clinic visits for obstetric care. Both patients and providers reported positive perceptions about the collection and use of PGHD during pregnancy. Reported benefits of collecting PGHD included the potential to use data to directly inform patient care (eg, identify issues and adjust medication) and to encourage ongoing patient involvement in their care (eg, increase patient attention to their health). Patients and providers had suggestions for expanding the collection and use of PGHD during pregnancy, and providers also shared considerations about strategies that could be used to expand PGHD collection and use. These strategies included considering the roles of both patients and providers in reporting and interpreting PGHD. Providers also noted the need to consider the unintended consequences of using PGHD that should be anticipated and addressed. CONCLUSIONS: Acknowledging the challenges, suggestions, and considerations voiced by patients and providers can inform the development and implementation of strategies to effectively collect and use PGHD to support patient-centered care during pregnancy.

Creating a Palliative Care Clinic for Patients with Cancer Pain and Substance Use Disorder.

BACKGROUND: Opioids are a first-line treatment for severe cancer pain. However, clinicians may be reluctant to prescribe opioids for patients with concurrent substance use disorders (SUD) or clinical concerns about non-prescribed substance use. MEASURES: Patient volume, 60-day retention rate, and use of sublingual buprenorphine to treat opioid use disorder. INTERVENTION: We created the Palliative Harm Reduction and Resiliency Clinic, a palliative care clinic founded on harm reduction principles and including formal collaboration with addiction psychiatry. OUTCOMES: During the first 18 months, patient volume increased steadily; 70% of patients had at least one subsequent visit within 60 days of the initial appointment; and buprenorphine was prescribed for 55% of patients with opioid use disorder. CONCLUSIONS/LESSONS LEARNED: The formal collaboration with addiction psychiatry and the integration of harm reduction principles and practices into ambulatory palliative care improved our ability to provide treatment to a previously underserved patient population with high symptom burden.

Reporting time toxicity in prospective cancer clinical trials: A scoping review.

PURPOSE: This review aimed to assess the measurement and reporting of time toxicity (i.e., time spent receiving care) within prospective oncologic studies. METHODS: On July 23, 2023, PubMed, Scopus, and Embase were queried for prospective or randomized controlled trials (RCT) from 1984 to 2023 that reported time toxicity as a primary or secondary outcome for oncologic treatments or interventions. Secondary analyses of RCTs were included if they reported time toxicity. The included studies were then evaluated for how they reported and defined time toxicity. RESULTS: The initial query identified 883 records, with 10 studies (3 RCTs, 2 prospective cohort studies, and 5 secondary analyses of RCTs) meeting the final inclusion criteria. Treatment interventions included surgery (n = 5), systemic therapies (n = 4), and specialized palliative care (n = 1). The metric "days alive and out of the hospital" was used by 80% (n = 4) of the surgical studies. Three of the surgical studies did not include time spent receiving ambulatory care within the calculation of time toxicity. "Time spent at home" was assessed by three studies (30%), each using different definitions. The five secondary analyses from RCTs used more comprehensive metrics that included time spent receiving both inpatient and ambulatory care. CONCLUSIONS: Time toxicity is infrequently reported within oncologic clinical trials, with no standardized definition, metric, or methodology. Further research is needed to identify best practices in the measurement and reporting of time toxicity to develop strategies that can be implemented to reduce its burden on patients seeking cancer care.

Effect of the Communities that HEAL intervention on receipt of behavioral therapies for opioid use disorder: A cluster randomized wait-list controlled trial.

BACKGROUND: The U.S. opioid overdose crisis persists. Outpatient behavioral health services (BHS) are essential components of a comprehensive response to opioid use disorder and overdose fatalities. The Helping to End Addiction Long-Term® (HEALing) Communities Study developed the Communities That HEAL (CTH) intervention to reduce opioid overdose deaths in 67 communities in Kentucky, Ohio, New York, and Massachusetts through the implementation of evidence-based practices (EBPs), including BHS. This paper compares the rate of individuals receiving outpatient BHS in Wave 1 intervention communities (n = 34) to waitlisted Wave 2 communities (n = 33). METHODS: Medicaid data included individuals ≥18 years of age receiving any of five BHS categories: intensive outpatient, outpatient, case management, peer support, and case management or peer support. Negative binomial regression models estimated the rate of receiving each BHS for Wave 1 and Wave 2. Effect modification analyses evaluated changes in the effect of the CTH intervention between Wave 1 and Wave 2 by research site, rurality, age, sex, and race/ethnicity. RESULTS: No significant differences were detected between intervention and waitlisted communities in the rate of individuals receiving any of the five BHS categories. None of the interaction effects used to test the effect modification were significant. CONCLUSIONS: Several factors should be considered when interpreting results-no significant intervention effects were observed through Medicaid claims data, the best available data source but limited in terms of capturing individuals reached by the intervention. Also, the 12-month evaluation window may have been too brief to see improved outcomes considering the time required to stand-up BHS. TRIAL REGISTRATION: Clinical Trials.gov http://www. CLINICALTRIALS: gov: Identifier: NCT04111939.

Differences by Race in Outcomes of an In-Person Training Intervention on Use of an Inpatient Portal: A Secondary Analysis of a Randomized Clinical Trial.

Importance: Differences in patient use of health information technologies by race can adversely impact equitable access to health care services. While this digital divide is well documented, there is limited evidence of how health care systems have used interventions to narrow the gap. Objective: To compare differences in the effectiveness of patient training and portal functionality interventions implemented to increase portal use among racial groups. Design, Setting, and Participants: This secondary analysis used data from a randomized clinical trial conducted from December 15, 2016, to August 31, 2019. Data were from a single health care system and included 6 noncancer hospitals. Participants were patients who were at least 18 years of age, identified English as their preferred language, were not involuntarily confined or detained, and agreed to be provided a tablet to access the inpatient portal during their stay. Data were analyzed from September 1, 2022, to October 31, 2023. Interventions: A 2 × 2 factorial design was used to compare the inpatient portal training intervention (touch, in-person [high] vs built-in video tutorial [low]) and the portal functionality intervention (technology, full functionality [full] vs a limited subset of functions [lite]). Main Outcomes and Measures: Primary outcomes were inpatient portal use, measured by frequency and comprehensiveness of use, and use of specific portal functions. A logistic regression model was used to test the association of the estimators with the comprehensiveness use measure. Outcomes are reported as incidence rate ratios (IRRs) for the frequency outcomes or odds ratios (ORs) for the comprehensiveness outcomes with corresponding 95% CIs. Results: Of 2892 participants, 550 (19.0%) were Black individuals, 2221 (76.8%) were White individuals, and 121 (4.2%) were categorized as other race (including African, American Indian or Alaska Native, Asian or Asian American, multiple races or ethnicities, and unknown race or ethnicity). Black participants had a significantly lower frequency (IRR, 0.80 [95% CI, 0.72-0.89]) of inpatient portal use compared with White participants. Interaction effects were not observed between technology, touch, and race. Among participants who received the full technology intervention, Black participants had lower odds of being comprehensive users (OR, 0.76 [95% CI, 0.62-0.91), but interaction effects were not observed between touch and race. Conclusions and Relevance: In this study, providing in-person training or robust portal functionality did not narrow the divide between Black participants and White participants with respect to their inpatient portal use. Health systems looking to narrow the digital divide may need to consider intentional interventions that address underlying issues contributing to this inequity. Trial Registration: ClinicalTrials.gov Identifier: NCT02943109.

COVID-19 vaccination perspectives among patients with Long COVID: A qualitative study.

Individuals who have Long COVID may have unique perspectives about COVID-19 vaccination due to the significant impact that COVID-19 has had on their lives. However, little is known about the specific vaccination perspectives among this patient population. The goal of our study was to improve our understanding of perspectives about COVID-19 vaccines among individuals with Long COVID. Interviews were conducted with patients receiving care at a post-COVID recovery clinic. Deductive thematic analysis was used to characterize participant perspectives according to the vaccine acceptance continuum framework, which recognizes a spectrum from vaccine acceptance to refusal. From interviews with 21 patients, we identified perspectives across the continuum of vaccine acceptance. These perspectives included acceptance of vaccines to prevent future illness, concerns about vaccine side effects on Long COVID symptoms, and refusal of vaccines due to perceived natural immunity. A limitation of our study is that these perspectives are specific to individuals receiving care at one post-COVID recovery clinic. In conclusion, our study demonstrates that some patients with Long COVID are uncertain about COVID-19 vaccines and boosters but may also be amenable to conversations that impact future vaccination acceptance. Patient perspectives should be considered when communicating recommendations for COVID-19 vaccinations to this population.

Effects of the Communities that Heal (CTH) intervention on perceived opioid-related community stigma in the HEALing Communities Study: results of a multi-site, community-level, cluster-randomized trial.

Background: Community stigma against people with opioid use disorder (OUD) and intervention stigma (e.g., toward naloxone) exacerbate the opioid overdose crisis. We examined the effects of the Communities that HEAL (CTH) intervention on perceived opioid-related community stigma by stakeholders in the HEALing Communities Study (HCS). Methods: We collected three surveys from community coalition members in 66 communities across four states participating in HCS. Communities were randomized into Intervention (Wave 1) or Wait-list Control (Wave 2) arms. We conducted multilevel linear mixed models to compare changes in primary outcomes of community stigma toward people treated for OUD, naloxone, and medication for opioid use disorder (MOUD) by arm from time 1 (before the start of the intervention) to time 3 (end of the intervention period in the Intervention arm). Findings: Intervention stakeholders reported a larger decrease in perceived community stigma toward people treated for OUD (adjusted mean change (AMC) -3.20 [95% C.I. -4.43, -1.98]) and toward MOUD (AMC -0.33 [95% C.I. -0.56, -0.09]) than stakeholders in Wait-list Control communities (AMC -0.18 [95% C.I. -1.38, 1.02], p = 0.0007 and AMC 0.11 [95% C.I. -0.09, 0.31], p = 0.0066). The relationship between intervention status and change in stigma toward MOUD was moderated by rural-urban status (urban AMC -0.59 [95% CI, -0.87, -0.32], rural AMC not sig.) and state. The difference in stigma toward naloxone between Intervention and Wait-list Control stakeholders was not statistically significant (p = 0.18). Interpretation: The CTH intervention decreased stakeholder perceptions of community stigma toward people treated for OUD and stigma toward MOUD. Implementing the CTH intervention in other communities could decrease OUD stigma across diverse settings nationally. Funding: US National Institute on Drug Abuse.

Patient Experiences Navigating Care Coordination For Long COVID: A Qualitative Study.

BACKGROUND: Little is known about how to best evaluate, diagnose, and treat long COVID, which presents challenges for patients as they seek care. OBJECTIVE: Understand experiences of patients as they navigate care for long COVID. DESIGN: Qualitative study involving interviews with patients about topics related to seeking and receiving care for long COVID. PARTICIPANTS: Eligible patients were at least 18 years of age, spoke English, self-identified as functioning well prior to COVID infection, and reported long COVID symptoms continued to impact their lives at 3 months or more after a COVID infection. APPROACH: Patients were recruited from a post-COVID recovery clinic at an academic medical center from August to September 2022. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis. KEY RESULTS: Participants (n=21) reported experiences related to elements of care coordination: access to care, evaluation, treatment, and ongoing care concerns. Some patients noted access to care was facilitated by having providers that listened to and validated their symptoms; other patients reported feeling their access to care was hindered by providers who did not believe or understand their symptoms. Patients reported confusion around how to communicate their symptoms when being evaluated for long COVID, and they expressed frustration with receiving test results that were normal or diagnoses that were not directly attributed to long COVID. Patients acknowledged that clinicians are still learning how to treat long COVID, and they voiced appreciation for providers who are willing to try new treatment approaches. Patients expressed ongoing care concerns, including feeling there is nothing more that can be done, and questioned long-term impacts on their aging and life expectancy. CONCLUSIONS: Our findings shed light on challenges faced by patients with long COVID as they seek care. Healthcare systems and providers should consider these challenges when developing strategies to improve care coordination for patients with long COVID.

Which factors influence the approach to shared decision-making among surgeons performing complex operations?

BACKGROUND: Shared decision-making (SDM) aims to create a context in which patients and surgeons work together to explore treatment options and goals of care. The objective of the current study was to characterize demographic factors, behaviors, and perceptions of patient involvement among surgeons relative to SDM. METHODS: Using a cross-sectional survey methodology, surgeon demographics, behaviors, and perceptions of patient involvement were assessed. Surgeon approaches to SDM were measured using a 100-point scale ranging from 'patient-led' (0) to 'surgeon-led' (100). RESULTS: Among 241 respondents, most were male (n = 123, 67.2%) and White (n = 124, 69.3%); roughly one-half of surgeons had been in practice ≥10 years (n = 120, 52.4%). Surgeon approaches to SDM ranged from 0 to 81.0, with a median rating of 50.0 (IQR: 35.5, 62.0). Reported approaches to SDM were associated with years in practice, sharing information, and perceptions of patient involvement. Surgeons in practice 10 + years most frequently utilized a 'Shared, Patient-led' approach to SDM (27.5%), while individuals with less experience more often employed a 'Shared, Surgeon-led' approach (33.3%, p = 0.031). Surgeons with a 'Patient-led' approach perceived patient involvement as most important (M = 3.82, SD = 0.16), while respondents who had a 'Surgeon-led' approach considered this less important (M = 3.57, SD = 0.38; p < 0.001). CONCLUSION: Surgeon factors including demographics, behaviors, and perceptions of patient involvement influenced SDM approaches. SDM between patients and surgeons should strive to be more dynamic and tailored to each specific patient's needs to promote optimal patient-centered care.

Mobile treatment for opioid use disorder: Implementation of community-based, same-day medication access interventions.

BACKGROUND: Medications for Opioid Use Disorder (MOUD) are lifesaving, but <20 % of individuals in the US who could benefit receive them. As part of the NIH-supported HEALing Communities Study (HCS), coalitions in several communities in Massachusetts and Ohio implemented mobile MOUD programs to overcome barriers to MOUD receipt. We defined mobile MOUD programs as units that provide same-day access to MOUD at remote sites. We aimed to (1) document the design and organizational structure of mobile programs providing same-day or next-day MOUD, and (2) explore the barriers and facilitators to implementation as well as the successes and challenges of ongoing operation. METHODS: Program staff from five programs in two states (n = 11) participated in semi-structured interviews. Two authors conducted thematic analysis of the transcripts based on the domains of the social-ecological model and the semi-structured interview guide. RESULTS: Mobile MOUD units sought to improve immediate access to MOUD ("Our answer is pretty much always, 'Yes, we'll get you started right here, right now,'"), advance equity ("making sure that we have staff who speak other languages, who are on the unit and have some resources that are in different languages,"), and decrease opioid overdose deaths. Salient program characteristics included diverse staff, including staff with lived experience of substance use ("She just had that personal knowledge of where we should be going"). Mobile units offered harm reduction services, broad medical services (in particular, wound care), and connection to transportation programs and incorporated consistency in service provision and telemedicine access. Implementation facilitators included trusting relationships with partner organizations (particularly pharmacies and correctional facilities), nuanced understanding of local politics, advertising, protocol flexibility, and on-unit prescriber hours. Barriers included unclear licensing requirements, staffing shortages and competing priorities for staff, funding challenges due to inconsistency in grant funding and low reimbursement ("It's not really possible that billing in and of itself is going to be able to sustain it"), and community stigma toward addiction services generally. CONCLUSIONS: Despite organizational, community, and policy barriers, participants described mobile MOUD units as an innovative way to expand access to life-saving medications, promote equity in MOUD treatment, and overcome stigma.

Short-term and long-term financial toxicity from breast cancer treatment: a qualitative study.

PURPOSE: The rising cost of breast cancer treatment has increased patients' financial burden, intensifying an already stressful treatment process. Although researchers increasingly recognize the harmful impact of medical and nonmedical costs associated with cancer treatment, understanding patients' perspectives of financial toxicity is limited. We aimed to explore the topic of financial toxicity through the lived experiences of patients with breast cancer from groups at risk of social and economic marginalization. METHODS: We conducted semi-structured interviews with 50 women with breast cancer from four specific groups: Black women, Medicaid enrollees, rural residents, and women age ≤ 40. We transcribed, coded, and analyzed the data using deductive and inductive approaches. RESULTS: Two overarching themes captured patients' experiences of financial toxicity: short-term and long-term impacts. Short-term stressors included direct medical (e.g., co-pays, premiums), nonmedical (e.g., transportation, lodging), and indirect (e.g., job loss, reduced work hours) costs. Early in their treatments, patients' focus on survival took precedence over financial concerns. However, as the treatment course progressed, fear of consequences from compounding costs of care and financial distress negatively impacted patients' lifestyles and outlooks for the future. CONCLUSION: Programs addressing financial toxicity that look beyond early-phase interventions are needed. Specifically, patients struggling with the accumulation of treatment costs and the resultant stress require ongoing support. Long-term support is especially needed for groups vulnerable to financial instability and social marginalization.

Patient Priorities, Decisional Comfort, and Satisfaction with Metformin versus Insulin for the Treatment of Gestational Diabetes Mellitus.

OBJECTIVE: We compared patient priorities, decisional comfort, and satisfaction with treating gestational diabetes mellitus (GDM) with metformin versus insulin among pregnant individuals with GDM requiring pharmacotherapy. STUDY DESIGN: We conducted a cross-sectional study of patients' perspectives about GDM pharmacotherapy in an integrated prenatal and diabetes care program from October 19, 2022, to August 24, 2023. The exposure was metformin versus insulin as the initial medication decision. Outcomes included standardized measures of patient priorities, decisional comfort, and satisfaction about their medication decision. RESULTS: Among 144 assessed individuals, 60.4% were prescribed metformin and 39.6% were prescribed insulin. Minoritized individuals were more likely to receive metformin compared with non-Hispanic White individuals (34.9 vs. 17.5%; p = 0.03). Individuals who were willing to participate in a GDM pharmacotherapy clinical trial were more likely to receive insulin than those who were unwilling (30.4 vs. 19.5%; p = 0.02). Individuals receiving metformin were more likely to report prioritizing avoiding injections (62.4 vs. 19.3%; adjusted odds ratio [aOR]: 2.83; 95% confidence interval [CI]: 1.10-7.31), wanting to take a medication no more than twice daily (56.0 vs. 30.4%; aOR: 3.67; 95% CI: 1.56-8.67), and believing that both medications can equally prevent adverse pregnancy outcomes (70.9 vs. 52.6%; aOR: 2.67; 95% CI: 1.19-6.03). Conversely, they were less likely to report prioritizing a medication that crosses the placenta (39.1 vs. 82.5%; aOR: 0.09; 95% CI: 0.03-0.25) and needing supplemental insulin to achieve glycemic control (21.2 vs. 47.4%; aOR: 0.36; 95% CI: 0.15-0.90). Individuals reported similarly high (mean score > 80%) levels of decisional comfort, personal satisfaction with medication decision-making, and satisfaction about their conversation with their provider about their medication decision with metformin and insulin (p ≥ 0.05 for all). CONCLUSION: Individuals with GDM requiring pharmacotherapy reported high levels of decision comfort and satisfaction with both metformin and insulin, although they expressed different priorities in medication decision-making. These results can inform future patient-centered GDM treatment strategies. KEY POINTS: · Pregnant individuals with GDM requiring pharmacotherapy expressed a high level of decisional comfort and satisfaction with medication decision making.. · Individuals placed different priorities on deciding to take metformin versus insulin.. · These results can inform interventions aimed at delivering person-centered diabetes care in pregnancy that integrates patient autonomy and knowledge about treatment options..

Identifying beliefs driving COVID-19 vaccination: Lessons for effective messaging.

Increasing vaccination acceptance has been essential during the COVID-19 pandemic and in preparation for future public health emergencies. This study aimed to identify messaging strategies to encourage vaccine uptake by measuring the drivers of COVID-19 vaccination among the general public. A survey to assess COVID-19 vaccination acceptance and hesitancy was advertised on Facebook in February-April 2022. The survey included items asking about COVID-19 vaccination status and participant demographics, and three scales assessing medical mistrust, perceived COVID-19 risk, and COVID-19 vaccine confidence (adapted from the Oxford COVID-19 vaccine confidence and complacency scale). The main outcome was vaccination, predicted by patient demographics and survey scale scores. Of 1,915 survey responses, 1,450 (75.7%) were included, with 1,048 (72.3%) respondents reporting they had been vaccinated. In a multivariable regression model, the COVID-19 vaccine confidence scale was the strongest predictor of vaccination, along with education level and perceived COVID-19 risk. Among the items on this scale, not all were equally important in predicting COVID-19 vaccination. The items that best predicted vaccination, at a given score on the COVID-19 vaccine confidence scale, included confidence that vaccine side effects are minimal, that the vaccine will work, that the vaccine will help the community, and that the vaccine provides freedom to move on with life. This study improved our understanding of perceptions most strongly associated with vaccine acceptance, allowing us to consider how to develop messages that may be particularly effective in encouraging vaccination among the general public for both the COVID-19 pandemic and future public health emergencies.

Implications for Electronic Surveys in Inpatient Settings Based on Patient Survey Response Patterns: Cross-Sectional Study.

BACKGROUND: Surveys of hospitalized patients are important for research and learning about unobservable medical issues (eg, mental health, quality of life, and symptoms), but there has been little work examining survey data quality in this population whose capacity to respond to survey items may differ from the general population. OBJECTIVE: The aim of this study is to determine what factors drive response rates, survey drop-offs, and missing data in surveys of hospitalized patients. METHODS: Cross-sectional surveys were distributed on an inpatient tablet to patients in a large, midwestern US hospital. Three versions were tested: 1 with 174 items and 2 with 111 items; one 111-item version had missing item reminders that prompted participants when they did not answer items. Response rate, drop-off rate (abandoning survey before completion), and item missingness (skipping items) were examined to investigate data quality. Chi-square tests, Kaplan-Meyer survival curves, and distribution charts were used to compare data quality among survey versions. Response duration was computed for each version. RESULTS: Overall, 2981 patients responded. Response rate did not differ between the 174- and 111-item versions (81.7% vs 83%, P=.53). Drop-off was significantly reduced when the survey was shortened (65.7% vs 20.2% of participants dropped off, P<.001). Approximately one-quarter of participants dropped off by item 120, with over half dropping off by item 158. The percentage of participants with missing data decreased substantially when missing item reminders were added (77.2% vs 31.7% of participants, P<.001). The mean percentage of items with missing data was reduced in the shorter survey (40.7% vs 20.3% of items missing); with missing item reminders, the percentage of items with missing data was further reduced (20.3% vs 11.7% of items missing). Across versions, for the median participant, each item added 24.6 seconds to a survey's duration. CONCLUSIONS: Hospitalized patients may have a higher tolerance for longer surveys than the general population, but surveys given to hospitalized patients should have a maximum of 120 items to ensure high rates of completion. Missing item prompts should be used to reduce missing data. Future research should examine generalizability to nonhospitalized individuals.

The Role of Palliative Care in Heart Failure, Part 2: Characteristics of Patients Undergoing Outpatient Palliative Care Evaluation for Advanced Cardiac Therapies.

Background: Characteristics of patients undergoing outpatient evaluation for advanced cardiac therapies are largely unknown. Objective: To describe demographics, baseline quality of life, and frailty of patients undergoing evaluation for advanced therapies at the time of presentation for evaluation in an outpatient cardiac palliative care clinic and examine key quality of life differences across patients. Design: Retrospective chart review to report baseline demographics and quality of life. Settings/Subjects: Patients at a large academic medical center in the United States referred for advanced cardiac therapies in 2021. Measurements: Depression and anxiety were measured using the Hospital Anxiety and Depression Scale; quality of life was measured using the Functional Assessment of Chronic Illness Therapy-Palliative care (FACIT-Pal) tool; and frailty was measured using the Fried Frailty Phenotype. Differences in quality of life by disease etiology, demographic characteristics, and frailty were assessed. Results: Fifty-four patients were seen in the outpatient cardiac palliative care clinic for advanced therapy evaluation. Most were Caucasian (80%) and male (74%). Patients traveled an average of 61 minutes to the clinic. All but five lived in a rural, medically underserved, or health professional shortage area. Forty percent scored abnormal or borderline abnormal for anxiety; 22% scored abnormal or borderline abnormal for depression. The FACIT-Pal mean score was 129 (standard deviation 23), with emotional and functional well-being domains contributing most to poor quality of life. Seventy-one percent were frail. Patients with a nonischemic etiology had a 3.32 times higher rate of anxiety than nonischemic patients (95% confidence interval = 1.05-10.54, p = 0.041). Conclusion: As patients undergoing transplant evaluation have high levels of depression, anxiety, and frailty, interdisciplinary care teams will be needed to properly manage the needs of this complex population. These results can inform efforts to integrate palliative care into advanced cardiac therapy and improve patients' experiences.

The Role of Palliative Care in Heart Failure, Part 3: Facilitators and Barriers to Cardiac Palliative Care Clinic Development.

Background: Patients with heart failure frequently have significant disease burden and complex psychosocial needs. The integration of palliative care into the management of these patients can decrease symptom burden throughout their course of illness. Therefore, in 2009, we established a cardiac palliative care clinic colocated with heart failure providers in a large academic heart hospital. Objective: To better understand the facilitators and barriers to integrating palliative care into our heart failure management service. Design: Qualitative study using a semistructured interview guide. Setting, Subjects: Between October 2020 and January 2021, we invited all 25 primary cardiac providers at our academic medical center in the midwestern United States to participate in semistructured qualitative interviews to discuss their experiences with the cardiac palliative care clinic. Measurements: Interview transcripts were analyzed using a deductive-dominant thematic analysis approach to reveal emerging themes. Results: Providers noted that the integration of palliative care into the treatment of patients with heart failure was helped and hindered primarily by issues related to operations and communications. Operational themes about clinic proximity and the use of telehealth as well as communication themes around provider-provider communication and the understanding of palliative care were particularly salient. Conclusions: The facilitators and barriers identified have broad applicability that are independent of the etiological nature (e.g., cancer, pulmonary, neurological) of any specialty or palliative care clinic. Moreover, the strategies we used to implement improvements in our clinic may be of benefit to other practice models such as independent and embedded clinics.

The Role of Palliative Care in Heart Failure, Part 1: Referring Provider Perspectives About Opportunities in Advanced Cardiac Therapies.

Background: There are many ways that palliative care can support patients with heart failure, but the role of palliative care in supporting patients who are considering or are already using advanced cardiac therapies is less clear. Objective: To understand referring providers' perspectives about the role of palliative care in the treatment of patients with heart failure considering or using advanced cardiac therapies. Design: Qualitative study using a semistructured interview guide. Setting/Subjects: This study was conducted at an academic medical center in the United States with an integrated cardiac palliative care program. Interviews were conducted with cardiology providers, including cardiologists, cardiac surgeons, and nurse practitioners who care for patients with heart failure and who are considering or receiving advanced cardiac therapies. Measurements: Interview transcripts were analyzed deductively and inductively to reveal themes in providers' perspectives. Results: Five themes were identified about the role of palliative care when advanced therapies were considered or being used: (1) educating patients; (2) supporting goal-concordant care; (3) managing symptoms; (4) addressing psychosocial needs; and (5) managing end-of-life care. Providers suggested palliative care could be a facilitator of advanced therapies, rather than merely something to add to end-of-life care. Conclusions: Cardiology providers recognize the value of integrating palliative care across the heart failure disease trajectory to provide therapy options, support decision-making processes, and provide goal-concordant care for patients considering or receiving advanced therapies. Increasing awareness of opportunities to integrate palliative care throughout the treatment of these patients may help cardiology providers better coordinate with palliative care specialists to improve patient care.

The Role of Palliative Care in Heart Failure, Part 4: A Framework for Collaboration in Advance Care Planning.

Background: Palliative care integration into cardiology is growing, allowing primary cardiology care teams increasing opportunities to utilize palliative care to support processes such as advance care planning (ACP). Objective: The aim of the study is to understand perspectives of cardiac care team members about the involvement and impact of palliative care on ACP in heart failure. Design: A qualitative study using a semistructured interview guide was performed. Settings/Subjects: Interviews were conducted with cardiac care team members, including cardiologists, cardiac surgeons, and nurse practitioners, at a large academic medical center in the United States with an integrated cardiac palliative care team. Measurements: Deductive and inductive thematic analysis of interview transcripts enabled characterization of themes around the role of palliative care in ACP. Results: Two themes were identified with regard to providers' perspectives about ACP: (1) different levels of comfort with initiating and conducting ACP conversations and (2) different opinions about the desired role of palliative care in the ACP process. In exploring these themes, we characterized four distinct approaches to ACP with palliative care as a novel framework for planning consultation. Conclusions: The different approaches to ACP and the implications for how cardiac providers interact with the palliative care team present an important opportunity to guide ACP consultation in practice. Adoption of this framework may help cardiac providers enhance the process of care delivery and ACP in important ways that improve care for their patients.