Elizabeth Kvale

Objectives: Palliative care (PC) is rare for patients with sickle cell disease (SCD). This study evaluated clinician attitudes toward PC for SCD. Methods: A cross-sectional survey was conducted between October 2022 and February 2023. Clinicians were recruited from institutions across the United States. Results: Eighty-six participants completed the survey. Most were physicians (90%), female (72%), had >10 years of experience (63%), and lacked prior PC training (57%). Most participants agreed (83%) that patients with SCD would benefit from PC, disagreed (99%) that PC is only for dying patients, and expressed interest (91%) in learning about PC interventions. Clinicians with prior PC training were more likely to agree that patients with SCD would benefit from PC (p = 0.016). Most participants thought patients referred to PC would worry about discussions on dying (76%), might feel abandoned (63%), might feel greater control (59%), and would feel cared for by their SCD provider (65%). Survey responses indicated that 41% and 63% of participants had never worked with PC in a collaborative care inpatient or outpatient setting, respectively. Conclusion: Clinicians caring for patients with SCD recognize the potential benefits of PC, although they are unsure about patient responses to PC referrals. Collaborative care teams of SCD and PC specialists are rare. Educating clinicians and patients with SCD about PC is urgently needed to encourage greater collaboration among care teams, particularly in outpatient settings. Strengthened collaborations between SCD and PC specialists could enhance holistic support and quality of life for patients with SCD.

Background: Ovarian cancer ranks 12th in cancer incidence among women in the United States and 5th among causes of cancer-related death. The typical treatment of ovarian cancer focuses on disease management, with little attention given to the survivorship needs of the patient. Qualitative work alludes to a gap in survivorship care; yet, evidence is lacking to support the delivery of survivorship care for individuals living with ovarian cancer. We developed the POSTCare survivorship platform with input from survivors of ovarian cancer and care partners as a means of delivering patient-centered survivorship care. This process is framed by the chronic care model and relevant behavioral theory. Objective: The overall goal of this study is to test processes of care that support quality of life (QOL) in survivorship. The specific aims are threefold: first, to test the efficacy of the POSTCare platform in supporting QOL, reducing depressive symptom burden, and reducing recurrence worry. In our second aim, we will examine factors that mediate the effect of the intervention. Our final aim focuses on understanding aspects of care platform design and delivery that may affect the potential for dissemination. Methods: We will enroll 120 survivors of ovarian cancer in a randomized controlled trial and collect data at 12 and 24 weeks. Each participant will be randomized to either the POSTCare platform or the standard of care process for survivorship. Our population will be derived from 3 clinics in Texas; each participant will have received some combination of treatment modalities; continued maintenance therapy is not exclusionary. Results: We will examine the impact of the POSTCare-O platform on QOL at 12 weeks after intervention as the primary end point. We will look at secondary outcomes, including depressive symptom burden, recurrence anxiety, and physical symptom burden. We will identify mediators important to the impact of the intervention to inform revisions of the intervention for subsequent studies. Data collection was initiated in November 2023 and will continue for approximately 2 years. We expect results from this study to be published in early 2026. Conclusions: This study will contribute to the body of survivorship science by testing a flexible platform for survivorship care delivery adapted for the specific survivorship needs of patients with ovarian cancer. The completion of this project will contribute to the growing body of science to guide survivorship care for persons living with cancer. Trial Registration: ClinicalTrials.gov NCT05752448; https://clinicaltrials.gov/study/NCT05752448 International Registered Report Identifier (IRRID): PRR1-10.2196/48069

Background: Persons living with dementia (PLWD) are twice as likely to be hospitalized than non‐dementia peers, and while hospitalized, more likely to suffer from delirium, falls, procedure‐related complications, and death. PLWDs and their care partners (CPs) need support and preparation for hospital‐to‐home transition to avoid unnecessary readmission to hospitals. The current study aims to identify and examine communication, decision‐making, and caregiver support experience of racially and financially diverse PLWDs/CP dyads during hospital‐to‐home care transition in the U.S.Method: We analyzed preliminary data from an ongoing mixed methods study of care transition experience of hospitalized PLWD/CP dyads. We used survey and hospital case notes data from 22 dyads and in‐depth interviews with 12 CPs recruited from two urban hospitals. We conducted descriptive and content analysis with quantitative and qualitative data.Result: Half of PLWDs were non‐white (50%), frail with recent history of fall (68%) or hospitalization (50%) in the last three months, lacked advance directives (46%), and received palliative care consult while hospitalized (77%). Majority of CPs were non‐White (68%), PLWD’s adult child/grandchild (64%), and reported knowing a little or not much at all about dementia (82%). Themes on CP communication, decision‐making and caregiving support emerged: CPs find surrogate decision‐making difficult; proactive palliative care prepares CPs for terminal trajectory of dementia; CPs need education and training on hands‐on caregiving tasks to keep PLWDs safe and comfortable at home; and CPs’ social needs need to be addressed to achieve goals of care for PLWDs.Conclusion: PLWDs and CPs need education, training, coaching, and individualized support during care transitions in order to develop self‐efficacy and maintain resilience. Palliative care, currently offered in over 80% of U.S. hospitals, provides important education and support for PLWDs and CPs. However, palliative care support ends after discharge for most families. Findings from our study suggest that continuing comprehensive palliative care support after discharge may be needed, when PLWD and CPs may need support the most. Future studies should examine needs of PLWDs and CPs living in communities and the role of palliative care to address informational and support needs.

BACKGROUND Ovarian cancer ranks 12th in cancer incidence among women in the United States and 5th among causes of cancer-related death. The typical treatment of ovarian cancer focuses on disease management, with little attention given to the survivorship needs of the patient. Qualitative work alludes to a gap in survivorship care; yet, evidence is lacking to support the delivery of survivorship care for individuals living with ovarian cancer. We developed the POSTCare survivorship platform with input from survivors of ovarian cancer and care partners as a means of delivering patient-centered survivorship care. This process is framed by the chronic care model and relevant behavioral theory. OBJECTIVE The overall goal of this study is to test processes of care that support quality of life (QOL) in survivorship. The specific aims are threefold: first, to test the efficacy of the POSTCare platform in supporting QOL, reducing depressive symptom burden, and reducing recurrence worry. In our second aim, we will examine factors that mediate the effect of the intervention. Our final aim focuses on understanding aspects of care platform design and delivery that may affect the potential for dissemination. METHODS We will enroll 120 survivors of ovarian cancer in a randomized controlled trial and collect data at 12 and 24 weeks. Each participant will be randomized to either the POSTCare platform or the standard of care process for survivorship. Our population will be derived from 3 clinics in Texas; each participant will have received some combination of treatment modalities; continued maintenance therapy is not exclusionary. RESULTS We will examine the impact of the POSTCare-O platform on QOL at 12 weeks after intervention as the primary end point. We will look at secondary outcomes, including depressive symptom burden, recurrence anxiety, and physical symptom burden. We will identify mediators important to the impact of the intervention to inform revisions of the intervention for subsequent studies. Data collection was initiated in November 2023 and will continue for approximately 2 years. We expect results from this study to be published in early 2026. CONCLUSIONS This study will contribute to the body of survivorship science by testing a flexible platform for survivorship care delivery adapted for the specific survivorship needs of patients with ovarian cancer. The completion of this project will contribute to the growing body of science to guide survivorship care for persons living with cancer. CLINICALTRIAL ClinicalTrials.gov NCT05752448; https://clinicaltrials.gov/study/NCT05752448 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/48069

316 Background: In December 2018, the Livestrong Cancer Institutes (LCI) launched the CaLM Model of Whole-Person Cancer Care. Compared to traditional models of oncology care, CaLM offers integrated interdisciplinary supportive care. As team-based care delivery models like CaLM begin to become more predominant, health IT infrastructure and systems are failing to adequately capture and measure simple clinical data on team-based encounters. Athena, our EHR, lacked discrete fields to capture necessary data from shared appointments in order to evaluate patient utilization of team-based longitudinal care; requiring us to develop a manual chart abstraction to evaluate the clinical model. Methods: We performed a literature review and environmental scan on chart abstraction for team-based care. When limited results were found, we sought to develop a novel tool in REDCap. We developed a list of variables and domains that required measurement and worked with IT to determine which, if any, could be generated automatically in reports in the Athena EHR. Remaining domains (12 domains and 151 unique data points) were strategically embedded in a methodological abstraction tool that mapped closely to the logic and flow of the EHR. We tested the tool and iterated over three months in 2019. Before abstraction began, we developed and executed a two module, four hour training for data collectors to ensure quality data collection. Over a one year period, four abstractors pulled data from over 400 individual patient charts in the EHR. Results: We developed a unique two-phase quality assurance (QA) algorithm. Phase 1- We randomly selected 10% of patient records; two abstractors completed dual data entry (same chart). Dual data entry controls for discrepant values that can be common in large datasets. A third-party team reviewed both charts, recording discrepancies by category, harmonizing charts, and data was used to retrain data collectors during weekly meetings. Highest discrepancies occurred when documenting treatment history (95%). For 89% of records, there were differences in psychosocial utilization. As a result of these discrepancies, we opted to extend QA- the remaining 90% of records were reviewed by third party scanning half of domains for accuracy. The chart abstraction was successfully completed on over 400 patient charts; the process took over 18 months to complete. Conclusions: Analyzing patters of team-based care is likely a manual process, regardless of EHR vendor. Our tool is well-structured with the ability to be open source, so that other clinics can utilize our tool in lieu of replicating the same painstaking process.

Background There is an ongoing need for interventions to improve quality of end-of-life care for patients in inpatient settings. Objective To compare two methods for implementing a Comfort Care Education Intervention for Palliative Care Consultation Teams (PCCT) in Veterans Affairs Medical Centers (VAMCs). Design Cluster randomized implementation trial conducted March 2015–April 2019. PCCTs were assigned to a traditional implementation approach using a teleconference or to an in-person, train-the-champion workshop to prepare PCCTs to be clinical champions at their home sites. Participants One hundred thirty-two providers from PCCTs at 47 VAMCs. Interventions Both training modalities involved review of educational materials, instruction on using an electronic Comfort Care Order Set, and coaching to deliver the intervention to other providers. Main Measurements Several processes of care were identified a priori as quality endpoints for end-of-life care (last 7 days) and abstracted from medical records of veterans who died within 9 months before or after implementation (n = 6,491). The primary endpoint was the presence of an active order for opioid medication at time of death. Secondary endpoints were orders/administration of antipsychotics, benzodiazepines, and scopolamine, do-not-resuscitate orders, advance directives, locations of death, palliative care consultations, nasogastric tubes, intravenous lines, physical restraints, pastoral care visits, and family presence at/near time of death. Generalized estimating equations were conducted adjusting for potential covariates. Key Results Eighty-eight providers from 23 VAMCs received teleconference training; 44 providers from 23 VAMCs received in-person workshop training. Analyses found no significant differences between intervention groups in any process-of-care endpoints (primary endpoint AOR (CI) = 1.18 (0.74, 1.89). Furthermore, pre-post changes were not significant for any endpoints (primary endpoint AOR (CI) = 1.16 (0.92, 1.46). Analyses may have been limited by high baseline values on key endpoints with little room for improvement. Conclusion Findings suggest the clinical effectiveness of palliative care educational intervention was not dependent on which of the two implementation methods was used. Trial Registration ClinicalTrials.gov identifier: NCT02383173

74 Background: Despite advances in cancer treatment, the orientation of our health system does not address the whole cancer patient or support the wellbeing of the heart, soul, and mind. We launched the CaLM Model of Whole Person Cancer Care, an oncology medical home approach that integrates high acuity, sub-specialty clinical cancer care with comprehensive, ongoing supportive care. The CaLM Model operationalizes the six components in the conceptual framework set forth in the NASEM’s 2013 report. Delivering High-Quality Cancer Care. Methods: Beginning December 2018, we piloted a “flipped” ambulatory care model in GYN and GI oncology delivering daily care through a subset of providers, the SWAT Team: a palliative NP, med onc NP, clinical social worker, and navigator. The SWAT Team triages all physical and social needs. As opposed to anchoring care with the oncologist and referring the patient out to social services, the SWAT team anchors care and the oncologist plugs in for treatment planning. The CaLM Model also utilizes coordinated, interdisciplinary care including financial and fertility navigation, nutrition, genetic counseling, pharmacy, and psychiatry, to manage the patient’s needs via a team-based approach by assessing and addressing the patient’s needs according to their values and preferences. We designed a new clinical and psychosocial assessment tool and patient-facing care plan; launched a Multi-Disciplinary “whole-person” case review process with all interdisciplinary providers and measured patient reported outcomes using the FACT-G, PHQ, GAD, and MD Anderson Symptom Inventory at baseline (initial visit) and every clinical visit. Measured at initial visit and every 6 months. Results: Early data show that the CaLM Model reduces patient symptom burden while improving quality of life. Conclusions: The CaLM Model is an efficient use of resources, compared to a traditional oncologist-focused model of cancer care. Further research is underway to assess cost benefit to the system, the patient and the payers. Ultimately, the CaLM Model may shift the paradigm of cancer care by demonstrating the feasibility and effectiveness of a patient-centered model of care delivery that builds a foundation for a value-based payment model.

Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers). We conducted an EPC feasibility study (4/1/14–8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U.S. The EPC intervention comprised: 1) an in-person outpatient palliative care consultation; and 2) telephonic nurse coach sessions and monthly calls. We collected patient- and caregiver-reported outcomes of quality of life (QOL), symptom, health, anxiety, and depression at baseline, 12- and 24-weeks. We used linear mixed-models to assess baseline to week 24 longitudinal changes. We enrolled 61 patients and 48 caregivers; between-site demographic differences included age, race, religion, marital, and work status. Most patients (69%) and caregivers (79%) completed all intervention sessions; however, we noted large between-site differences in measurement completion (38% southeast vs. 72% northeast). Patients experienced moderate effect size improvements in QOL, symptoms, physical, and mental health; caregivers experienced moderate effect size improvements in QOL, depression, mental health, and burden. Small-to-moderate effect size improvements were noted in patients’ hospital and ICU days and emergency visits. Between-site demographic, attrition, and participant-reported outcomes highlight the importance of intervention pilot-testing in culturally diverse populations. Observations from this pilot feasibility trial allowed us to refine the methodology of an in-progress, full-scale randomized clinical efficacy trial. Clinicaltrials.gov NCT03177447 (retrospectively registered, June 2017).