Clinician Perceptions of Barriers and Facilitators for Delivering Early Integrated Palliative Care via Telehealth.

Early integrated palliative care (EIPC) significantly improves clinical outcomes for patients with advanced cancer. Telehealth may be a useful tool to deliver EIPC sustainably and equitably. Palliative care clinicians completed a survey regarding their perceptions of the barriers, facilitators, and benefits of using telehealth video visits for delivering EIPC for patients with advanced lung cancer. Forty-eight clinicians across 22 cancer centers completed the survey between May and July 2022. Most (91.7%) agreed that telehealth increases access to EIPC and simplifies the process for patients to receive EIPC (79.2%). Clinicians noted that the elderly, those in rural areas, and those with less-resourced backgrounds have greater difficulty using telehealth. Perceived barriers were largely patient-based factors, including technological literacy, internet and device availability, and patient preferences. Clinicians agreed that several organizational factors facilitated telehealth EIPC delivery, including technological infrastructure (85.4%), training (83.3%), and support from study coordinators (81.3%). Other barriers included systems-based factors, such as insurance reimbursement and out-of-state coverage restrictions. Patient-, organization-, and systems-based factors are all important to providing and improving access to telehealth EIPC services. Further research is needed to investigate the efficacy of telehealth EIPC and how policies and interventions may improve access to and dissemination of this care modality.

Advance Care Planning conversations: What constitutes best practice and the way forward: Advance Care Planning-Gespräche: Was Best Practice ausmacht und wie es weitergehen kann.

BACKGROUND: Advance Care Planning (ACP) conversations are a cornerstone of modern health care and need to be supported. However, research indicates that the uptake thereof is limited, regardless of various campaigns. ACP conversations are complex and specific elements thereof should be discussed at various timepoints during the illness trajectory. OBJECTIVE: This narrative review delineates what ACP conversation should entail, and a way forward. METHODS: A PEO (Population, Exposure, Outcome) search was performed using relevant keywords, and 615 articles were identified. Through screening and coding, this number was reduced to 24 articles. All the authors were involved in the final selection of the articles. RESULTS: Various themes developed throughout the review which include timing early on in the disease trajectory; incorporating beliefs and culturally relevant contexts; conversations needing to be iterative and short; involving surrogates and family; applying various media formats. DISCUSSION: ACP conversations are relevant. ACP is not static and needs to be dynamic as patients' illness trajectories and goals change. The care team needs to guard themselves against having ACP conversations to satisfy a metric and should instead be guided by the patient's expressed values and wishes. A system-wide operational plan will help alleviate common barriers in having appropriate ACP conversations.

ADCC's Improving Goal Concordant Care Initiative: Implementing Primary Palliative Care Principles.

BACKGROUND: High-quality, timely goals of care communication (GOCC) may improve patient and caregiver outcomes and promote care that is consistent with patient preferences. PROBLEM: Cancer patients, and their loved ones, appreciate GOCC; however, oncologists often lack formal communication training, institutional support and structures necessary to promote the delivery, documentation, and longitudinal follow-up of GOCC. PROPOSED SOLUTION: The Alliance of Dedicated Cancer Centers (ADCC), representing 10 U.S. academic cancer hospitals, undertook the Improving Goal Concordant Care Initiative (IGCC). This national, 3-year implementation initiative was designed in Fall 2019 by a workgroup of quality, oncology, and palliative care leaders, as well as patient and family advisory committee members (PFAC). IGCC addresses systemic gaps by requiring four core components for participation: 1) Implementation of a formal communication skills training (CST) program, 2) Structured GOCC documentation in the electronic medical record that is visible to all clinicians, 3) Expectations regarding the timing and patient populations for GOCC, and 4) Implementation of a measurement framework. METHOD: Dyads of palliative and oncology leaders committed to attend regularly scheduled, ADCC-led, virtual meetings during the design and implementation phase, incorporating PFAC feedback at every stage. Using the RE-AIM framework, we describe process and outcome evaluation measures defined by implementation and measures workgroups and collected routinely, including: CST completion; trainee evaluation response rate, trainee-reported quality of CST, trainee changes in self-efficacy and distress; percent of high-priority patients participating in GOCC, and patient-reported response to the "Heard and Understood" scale (HU). IGCC's impact will be assessed using claims-based utilization metrics near the end of life (EOLM) and followed longitudinally. Qualitative evaluations near the completion of IGCC will provide insight into perceived barriers, enabling factors, and sustainability. OUTCOMES: Implementation of all IGCC components has begun at all sites. ADCC-wide, 35% of MD/DOs have completed CST (range by site: 8%-100%). CST is highly rated; in Quarter 3, 2022, 93%-100%, 90%-100% and 87%-100% of respondents reported above average to excellent CST quality, likelihood to use the skills and likelihood to recommend CST to others, respectively. Clinician self-efficacy and distress ratings are expected in late 2023. All sites have identified patient populations and continue to refine automated triggers and timelines; uptake of GOCC documentation has been slow. Eight of 10 sites have submitted patient-reported HU data. EOLM data are expected for all sites in early 2024. LESSONS LEARNED: Flexibility in implementation with shared definitions, measures, and learnings about approaches optimizes the ability of all centers to collaborate and make progress in improving GOCC. Flexibility adds to the complexity of understanding intervention effectiveness, the critical intervention components and the fidelity necessary to achieve specific outcomes.

Prospective Comparison of Medical Oncologists and a Machine Learning Model to Predict 3-Month Mortality in Patients With Metastatic Solid Tumors.

Importance: To date, oncologist and model prognostic performance have been assessed independently and mostly retrospectively; however, how model prognostic performance compares with oncologist prognostic performance prospectively remains unknown. Objective: To compare oncologist performance with a model in predicting 3-month mortality for patients with metastatic solid tumors in an outpatient setting. Design, Setting, and Participants: This prognostic study evaluated prospective predictions for a cohort of patients with metastatic solid tumors seen in outpatient oncology clinics at a National Cancer Institute-designated cancer center and associated satellites between December 6, 2019, and August 6, 2021. Oncologists (57 physicians and 17 advanced practice clinicians) answered a 3-month surprise question (3MSQ) within clinical pathways. A model was trained with electronic health record data from January 1, 2013, to April 24, 2019, to identify patients at high risk of 3-month mortality and deployed silently in October 2019. Analysis was limited to oncologist prognostications with a model prediction within the preceding 30 days. Exposures: Three-month surprise question and gradient-boosting binary classifier. Main Outcomes and Measures: The primary outcome was performance comparison between oncologists and the model to predict 3-month mortality. The primary performance metric was the positive predictive value (PPV) at the sensitivity achieved by the medical oncologists with their 3MSQ answers. Results: A total of 74 oncologists answered 3099 3MSQs for 2041 patients with advanced cancer (median age, 62.6 [range, 18-96] years; 1271 women [62.3%]). In this cohort with a 15% prevalence of 3-month mortality and 30% sensitivity for both oncologists and the model, the PPV of oncologists was 34.8% (95% CI, 30.1%-39.5%) and the PPV of the model was 60.0% (95% CI, 53.6%-66.3%). Area under the receiver operating characteristic curve for the model was 81.2% (95% CI, 79.1%-83.3%). The model significantly outperformed the oncologists in short-term mortality. Conclusions and Relevance: In this prognostic study, the model outperformed oncologists overall and within the breast and gastrointestinal cancer cohorts in predicting 3-month mortality for patients with advanced cancer. These findings suggest that further studies may be useful to examine how model predictions could improve oncologists' prognostic confidence and patient-centered goal-concordant care at the end of life.

Adoption of Patient-Generated Health Data in Oncology: A Report From the NCCN EHR Oncology Advisory Group.

BACKGROUND: Collecting, monitoring, and responding to patient-generated health data (PGHD) are associated with improved quality of life and patient satisfaction, and possibly with improved patient survival in oncology. However, the current state of adoption, types of PGHD collected, and degree of integration into electronic health records (EHRs) is unknown. METHODS: The NCCN EHR Oncology Advisory Group formed a Patient-Reported Outcomes (PRO) Workgroup to perform an assessment and provide recommendations for cancer centers, researchers, and EHR vendors to advance the collection and use of PGHD in oncology. The issues were evaluated via a survey of NCCN Member Institutions. Questions were designed to assess the current state of PGHD collection, including how, what, and where PGHD are collected. Additionally, detailed questions about governance and data integration into EHRs were asked. RESULTS: Of 28 Member Institutions surveyed, 23 responded. The collection and use of PGHD is widespread among NCCN Members Institutions (96%). Most centers (90%) embed at least some PGHD into the EHR, although challenges remain, as evidenced by 88% of respondents reporting the use of instruments not integrated. Forty-seven percent of respondents are leveraging PGHD for process automation and adherence to best evidence. Content type and integration touchpoints vary among the members, as well as governance maturity. CONCLUSIONS: The reported variability regarding PGHD suggests that it may not yet have reached its full potential for oncology care delivery. As the adoption of PGHD in oncology continues to expand, opportunities exist to enhance their utility. Among the recommendations for cancer centers is establishment of a governance process that includes patients. Researchers should consider determining which PGHD instruments confer the highest value. It is recommended that EHR vendors collaborate with cancer centers to develop solutions for the collection, interpretation, visualization, and use of PGHD.

NCCN Guidelines® Insights: Palliative Care, Version 2.2021.

Palliative care has evolved to be an integral part of comprehensive cancer care with the goal of early intervention to improve quality of life and patient outcomes. The NCCN Guidelines for Palliative Care provide recommendations to help the primary oncology team promote the best quality of life possible throughout the illness trajectory for each patient with cancer. The NCCN Palliative Care Panel meets annually to evaluate and update recommendations based on panel members' clinical expertise and emerging scientific data. These NCCN Guidelines Insights summarize the panel's recent discussions and highlights updates on the importance of fostering adaptive coping strategies for patients and families, and on the role of pharmacologic and nonpharmacologic interventions to optimize symptom management.

Integrating Academic and Community Cancer Care and Research through Multidisciplinary Oncology Pathways for Value-Based Care: A Review and the City of Hope Experience.

As the US transitions from volume- to value-based cancer care, many cancer centers and community groups have joined to share resources to deliver measurable, high-quality cancer care and clinical research with the associated high patient satisfaction, provider satisfaction, and practice health at optimal costs that are the hallmarks of value-based care. Multidisciplinary oncology care pathways are essential components of value-based care and their payment metrics. Oncology pathways are evidence-based, standardized but personalizable care plans to guide cancer care. Pathways have been developed and studied for the major medical, surgical, radiation, and supportive oncology disciplines to support decision-making, streamline care, and optimize outcomes. Implementing multidisciplinary oncology pathways can facilitate comprehensive care plans for each cancer patient throughout their cancer journey and across large multisite delivery systems. Outcomes from the delivered pathway-based care can then be evaluated against individual and population benchmarks. The complexity of adoption, implementation, and assessment of multidisciplinary oncology pathways, however, presents many challenges. We review the development and components of value-based cancer care and detail City of Hope's (COH) academic and community-team-based approaches for implementing multidisciplinary pathways. We also describe supportive components with available results towards enterprise-wide value-based care delivery.

Early Integrated Telehealth versus In-Person Palliative Care for Patients with Advanced Lung Cancer: A Study Protocol.

Introduction: Early palliative care (PC) integrated with oncology care improves quality of life (QOL), depression symptoms, illness understanding, and end-of-life (EOL) care for patients with advanced lung cancer. The aims of this trial are to compare the effect of delivering early integrated PC through telehealth versus in-person on patient and caregiver outcomes. We hypothesize that both modalities for delivering early PC would be equivalent for improving patient QOL, communication about EOL care preferences with their oncologist, and length of stay in hospice. Methods: For this comparative effectiveness trial, we will enroll and randomize 1250 adult patients with advanced nonsmall cell lung cancer (NSCLC), who are not being treated with curative intent, to receive either early integrated telehealth or in-person PC at 20 cancer centers throughout the United States. Patients may also invite a family caregiver to participate in the study. Patients and their caregivers in both study groups meet at least every four weeks with a PC clinician from within 12 weeks of patient diagnosis of advanced NSCLC until death. Participants complete measures of QOL, mood, and quality of communication with oncologists at baseline before randomization and at 12, 24, 36, and 48 weeks. Information on health care utilization, including length of stay in hospice, will be collected from patients' health records. To test equivalence in outcomes between study groups, we will compute analysis of covariance and mixed linear models, controlling for baseline scores and study site. Study Implementation and Stakeholder Engagement: To ensure that this comparative effectiveness trial and findings are as patient centered and meaningful as possible, we have incorporated a robust patient and stakeholder engagement plan. Our stakeholder partners include (1) patients/families, (2) PC clinicians, (3) telehealth experts and clinician users, (4) representatives from health care systems and medical insurance providers, and (5) health care policy makers and advocates. These stakeholders will inform and provide feedback about every phase of study implementation.

Supportive Care for the Head and Neck Cancer Patient.

Patients with head and neck cancers (HNC) face multiple psychosocial and physical challenges that require multidisciplinary attention and care throughout their disease process. The psychoemotional symptoms may be triggered by cosmetic disfigurement and/or functional deficits related to the cancer itself or cancer-directed treatments. These physical and emotional symptoms can be demoralizing and require acute and long-term professional assistance throughout a patient's lifespan. HNC remains one of the most challenging cancers to treat due to disfigurement, emotional suffering, social isolation, and loss of self-esteem. The emotional and physical symptoms a supportive care team can address are discussed in this chapter.

NCCN Guidelines Insights: Palliative Care, Version 2.2017.

The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. These NCCN Guidelines Insights summarize and provide context for the updated guidelines recommendations regarding hospice and end-of-life (EOL) care. Updates for 2017 include revisions to and restructuring of the algorithms that address important EOL concerns. These recommendations were revised to provide clearer guidance for oncologists as they care for patients with cancer who are approaching the transition to EOL care. Recommendations for interventions and reassessment based on estimated life expectancy were streamlined and reprioritized to promote hospice referrals and improved EOL care.

How do I best manage insomnia and other sleep disorders in older adults with cancer?

Insomnia is common in older adults with cancer, with a reported prevalence of 19-60% in prior studies. Cancer treatments are associated with increased risk of insomnia or aggravation of pre-existing insomnia symptoms, and patients who are receiving active cancer treatments are more likely to report insomnia. Insomnia can lead to significant physical and psychological consequences with increased mortality. We discuss physiological sleep changes in older adults, and illustrated the various sleep disorders. We present a literature review on the prevalence and the effects of insomnia on the quality of life in older adults with cancer. We discuss the risk factors and presented a theoretical framework of insomnia in older adults with cancer. We present a case study to illustrate the assessment and management of insomnia in older adults with cancer, comparing and contrasting a number of tools for sleep assessment. There are currently no guidelines on the treatment of sleep disorders in older adults with cancer. We present an algorithm developed at the City of Hope Comprehensive Cancer Center by a multidisciplinary team for managing insomnia, using evidence-based pharmacologic and non-pharmacologic interventions.

Palliative Care Version 1.2016.

The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. The NCCN Guidelines are intended to provide guidance to the primary oncology team on the integration of palliative care into oncology. The NCCN Palliative Care Panel's recommendations seek to ensure that each patient experiences the best quality of life possible throughout the illness trajectory. Accordingly, the NCCN Guidelines outline best practices for screening, assessment, palliative care interventions, reassessment, and after-death care.

Support for Patients and Family Caregivers in Lung Cancer: Educational Components of an Interdisciplinary Palliative Care Intervention.

Consistent with the recommendations of the Institute of Medicine Report on quality cancer care, attention to symptom management and quality of life concerns of patients with lung cancer should be addressed throughout the disease trajectory. As part of a NCI-funded Program Project grant, this paper reports on the patient and family caregiver education component of a nurse-lead, tailored palliative care intervention for patients with early (I-III, n=130) and late (IV, n=142) stage lung cancer. Patients and family caregivers received 4 separate educational sessions organized around the Quality of Life model domains (physical, psychological, social, and spiritual well-being). Each patient and caregiver was presented at a weekly interdisciplinary case conference which also informed the educational sessions. Based on needs and team suggestions, an individualized palliative care plan was created and a tailored educational intervention was designed based on topics chosen by each participant. The most common topics chosen by patients in each domain were fatigue, worry and fear, social support/isolation, and hope. Family caregivers most commonly chose fatigue, worry and fear, communication, and purpose and meaning in life. The mean time spent in each teaching session ranged from 31 to 44 minutes for patients and 25 to 35 minutes for family caregivers. There is a vital need for interdisciplinary palliative care interventions for patients across all stages and across the disease trajectory. Nurses are vital to integrating palliative care into routine care. Providing a tailored educational intervention is an important aspect of palliative care for patients and family caregivers. This paper focuses on the process of the tailored educational intervention.

Cancer-Related Fatigue, Version 2.2015.

Cancer-related fatigue is defined as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning. It is one of the most common side effects in patients with cancer. Fatigue has been shown to be a consequence of active treatment, but it may also persist into posttreatment periods. Furthermore, difficulties in end-of-life care can be compounded by fatigue. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Cancer-Related Fatigue provide guidance on screening for fatigue and recommendations for interventions based on the stage of treatment. Interventions may include education and counseling, general strategies for the management of fatigue, and specific nonpharmacologic and pharmacologic interventions. Fatigue is a frequently underreported complication in patients with cancer and, when reported, is responsible for reduced quality of life. Therefore, routine screening to identify fatigue is an important component in improving the quality of life for patients living with cancer.

Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer.

BACKGROUND: Family caregivers (FCGs) experience significant deteriorations in quality of life while caring for patients with lung cancer. In this study, the authors tested the effectiveness of an interdisciplinary palliative care intervention for FCGs of patients diagnosed with stage I through IV nonsmall cell lung cancer. METHODS: FCGs who were identified by patients as their primary caregivers were enrolled in a prospective, quasi-experimental study in which the usual care group was accrued first followed by the intervention group. FCGs in the intervention group were presented at interdisciplinary care meetings, and they also received 4 educational sessions organized in the physical, psychological, social, and spiritual domains. The sessions included self-care plans to support the FCG's own needs. Caregiver burden, caregiving skills preparedness, psychological distress, and FCG quality of life were assessed at baseline and after 12 weeks using validated measures. RESULTS: In total, 366 FCGs were included in the primary analysis. FCGs who received the interdisciplinary palliative care intervention had significantly better scores for social well being (5.84 vs 6.86; P < .001) and had lower psychological distress scores (4.61 vs 4.20; P = .010) at 12 weeks compared with FCGs in the usual care group. FCGs in the intervention group also had significantly less caregiver burden compared with FCGs in the usual care group (P = .008). CONCLUSIONS: An interdisciplinary approach to palliative care in lung cancer resulted in statistically significant improvements in FCG's social well being and psychological distress and in less caregiver burden.

Family caregivers' distress levels related to quality of life, burden, and preparedness.

OBJECTIVE: Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs' distress, per the distress thermometer (DT) and FCGs' QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care. METHODS: Family caregivers of patients diagnosed with non-small cell lung cancer were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG preparedness, and DT. Baseline data were utilized for this analysis. RESULTS: Of the FCGs (N = 163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with non-small cell lung cancer stage I-III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as self-care component, FCG role component, and FCG stress component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress. CONCLUSION: This exploration of FCGs' concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer.

Oxygen for end-of-life lung cancer care: managing dyspnea and hypoxemia.

Oxygen is commonly prescribed for lung cancer patients with advancing disease. Indications include hypoxemia and dyspnea. Reversal of hypoxemia in some cases will alleviate dyspnea. Oxygen is sometimes prescribed for non-hypoxemic patients to relieve dyspnea. While some patients may derive symptomatic benefit, recent studies demonstrate that compressed room air is just as effective. This raises the question as to whether to continue their oxygen. The most efficacious treatment for dyspnea is pharmacotherapy-particularly opioids. Adjunctive therapies include pursed lips breathing and a fan blowing toward the patient. Some patients may come to require high-flow oxygen. High-flow delivery devices include masks, high-flow nasal oxygen and reservoir cannulas. Each device has advantages and drawbacks. Eventually, it may be impossible or impractical to maintain a SpO2 > 90%. The overall goal in these patients is comfort rather than a target SpO2. It may eventually be advisable to remove continuous oximetry and transition focus to pharmacological management to achieve patient comfort.