Financial toxicity in early-phase cancer clinical trial participants.

BACKGROUND: Little is known about financial toxicity in early-phase clinical trial (EP-CT) participants. This study sought to describe financial toxicity in EP-CT participants and assess associations with patient characteristics and patient-reported outcomes (PROs). METHODS: Prospectively enrolled EP-CT participants from were followed from April 2021 through January 2023. Participants completed the Comprehensive Score for Financial Toxicity (<26 = financial toxicity) at time of treatment. Quality of life (QOL), symptoms, coping, and resource concerns were surveyed. Associations of financial toxicity with patient characteristics, PROs, and clinical outcomes were explored. RESULTS: Of 261 eligible patients, 197 completed baseline assessments (75.5%, median age = 63.4 years [31.8-88.6], 57.4% female). Most common cancers were gastrointestinal (33.0%) and breast (20.8%). More than one third (34.0%) of patients reported financial toxicity. Patients with financial toxicity were more likely to be <65 years (70.2% vs 48.5%, p = .004), unemployed (45.5% vs 16.9%, p < .001), not have attended college (53.1% vs 26.4%, p = .002), and have income <$60,000 (59.7% vs 25.4%, p < .001). In adjusted models, patients with financial toxicity reported lower QOL (B = -6.66, p = .004) and acceptance (B = -0.78, p = .002), and increased self-blame (B = 0.87, p < .001). They were more likely to have concerns regarding housing (10.6% vs 2.3%, p = .025), bills (31.8% vs 3.8%, p < .001), food (9.1% vs 0.8%, p = .006), and employment (21.2% vs 1.5%, p < .001). There was no difference in time on trial (hazard ratio, 1.03; p = .860) or survival (hazard ratio, 1.16; p = .496). CONCLUSIONS: More than one third of EP-CT participants reported financial toxicity. Factors associated with financial toxicity and demonstrated novel associations among financial toxicity with QOL, coping, and resource concerns were identified, highlighting the need to address financial toxicity among this population.

Multidisciplinary oncology clinicians' experiences delivering spiritual care to patients with cancer and their care partners.

PURPOSE: To understand multidisciplinary healthcare clinicians' meaningful and challenging experiences providing spiritual care to patients with cancer and their care partners. METHODS: Multidisciplinary clinicians who participated in a communication training program supported by the National Cancer Institute or a palliative care training for nurses (N = 257) responded to two, open-ended questions about meaningful and challenging experiences of providing spiritual care. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (68%), social work (22%), and chaplaincy (10%) responded to open-ended survey questions. Three themes related to meaningful experiences of providing spiritual care emerged: building authentic interpersonal connection with patients and care partners; creating intentional space for patients and care partners to inform spiritual care; and actively supporting patients and care partners in their processes with spirituality. Three themes related to challenging experiences of providing spiritual care emerged: contextual factors and clinical circumstances complicate provision of spiritual care; facing barriers to providing high-quality, patient-centered care; and navigating ethical and logistical issues that affect spiritual and other care. CONCLUSION: Clinicians derive meaning from a range of experiences throughout their provision of spiritual care to patients with cancer. However, they also face many challenges in delivering person-centered spiritual care in cancer settings, with some challenges reflecting significant gaps in spiritual care knowledge and training. Findings can guide future training and educational endeavors for multidisciplinary clinicians in the domain of spiritual care.

Communicating with LGBTQ+ persons at end of life: A case-based analysis of interdisciplinary palliative clinician perspectives.

OBJECTIVE: Lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ+) persons with serious illness and their families often experience end-of-life (EOL) care disparities, such as homophobia and transphobia, disrespect and mistreatment, and exclusion of significant others or life partners. The aim of the study was to explore interdisciplinary clinicians' communication knowledge and priorities using a case of a gay man at EOL and his same-sex, cisgender spouse. METHODS: Interdisciplinary clinicians (n = 150) who participated in a national 3-day communication training program, rooted in Adult Learning Theory and supported by the National Cancer Institute, responded to open-ended questions about a composite case study emphasizing diversity challenges relevant to LGBTQ + communities in the EOL context. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (48%), social work (35%) and chaplaincy (17%) responded to the survey. Five themes emerged: 1) provision of patient-centered care; 2) legal and ethical factors inform care and decision making; 3) considerations of same-sex spouse or couple context; 4) dynamics and role of family of origin; and 5) elements of inclusive clinical care. CONCLUSIONS: LGBTQ + inclusive communication training is essential for all palliative clinicians to deliver culturally safe care. Our findings have implications for identifying unconscious bias, addressing discriminatory care, filling clinician knowledge gaps, and informing educational interventions to support LGBTQ + inclusion. Future research must focus on micro- and macro-level communication issues that shape the quality of palliative and EOL care for patients and chosen family members.

Integrating evidence-based communication principles into routine cancer care.

PURPOSE: The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication. METHODS: Composite cases, communication skills blueprint, and visual conceptualization. RESULTS: High-stakes circumstances in each case are described, including end-of-life planning, advanced pediatric illness, strong emotions, and health inequities. Three overarching communication approaches are discussed: (1) content selection and delivery; (2) rapport development; and (3) empathic connection. The key takeaways following each case provide succinct summaries of challenges encountered and approaches used. A communication blueprint from the Memorial Sloan Kettering Cancer Center Communication Skills Training Program and Research Laboratory has been adapted and is comprised of strategies, skills, process tasks, and sample talking points. A visually concise tool - the Communication Blueprint Traffic Circle - illustrates these concepts and demonstrates the iterative, holistic, and agile considerations inherent to effective communication. CONCLUSION: Evidence-based communication is foundational to person-centeredness, associated with improved clinician and patient/caregiver outcomes, and can be integrated throughout routine oncology care. When used by clinicians, evidence-based communication can improve patient and caregiver experiences and assist in ensuring goal-concordant cancer care delivery.

Calling all nurses-Now is the time to take action on improving the quality of care in nursing homes.

For a number of decades, nurses have raised concerns about nursing-related issues in nursing homes (NH) such as inadequate registered nurse (RN) staffing, insufficient RN and advanced practice registered nurse (APRN) gerontological expertise, and lack of RN leadership competencies. The NASEM Committee on the Quality of Care in Nursing Homes illuminated the long-standing issues and concerns affecting the quality of care in nursing homes and proposed seven goals and associated recommendations intended to achieve the Committee's vision: Nursing home residents receive care in a safe environment that honors their values and preferences, addresses goals of care, promotes equity, and assesses the benefits and risks of care and treatments. This paper outlines concrete and specific actions nurses and nursing organizations can take to ensure the recommendations are implemented.

Spirituality in Serious Illness and Health.

Importance: Despite growing evidence, the role of spirituality in serious illness and health has not been systematically assessed. Objective: To review evidence concerning spirituality in serious illness and health and to identify implications for patient care and health outcomes. Evidence Review: Searches of PubMed, PsycINFO, and Web of Science identified articles with evidence addressing spirituality in serious illness or health, published January 2000 to April 2022. Independent reviewers screened, summarized, and graded articles that met eligibility criteria. Eligible serious illness studies included 100 or more participants; were prospective cohort studies, cross-sectional descriptive studies, meta-analyses, or randomized clinical trials; and included validated spirituality measures. Eligible health outcome studies prospectively examined associations with spirituality as cohort studies, case-control studies, or meta-analyses with samples of at least 1000 or were randomized trials with samples of at least 100 and used validated spirituality measures. Applying Cochrane criteria, studies were graded as having low, moderate, serious, or critical risk of bias, and studies with serious and critical risk of bias were excluded. Multidisciplinary Delphi panels consisting of clinicians, public health personnel, researchers, health systems leaders, and medical ethicists qualitatively synthesized and assessed the evidence and offered implications for health care. Evidence-synthesis statements and implications were derived from panelists' qualitative input; panelists rated the former on a 9-point scale (from "inconclusive" to "strongest evidence") and ranked the latter by order of priority. Findings: Of 8946 articles identified, 371 articles met inclusion criteria for serious illness; of these, 76.9% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for serious illness: (1) incorporate spiritual care into care for patients with serious illness; (2) incorporate spiritual care education into training of interdisciplinary teams caring for persons with serious illness; and (3) include specialty practitioners of spiritual care in care of patients with serious illness. Of 6485 health outcomes articles, 215 met inclusion criteria; of these, 66.0% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for health outcomes: (1) incorporate patient-centered and evidence-based approaches regarding associations of spiritual community with improved patient and population health outcomes; (2) increase awareness among health professionals of evidence for protective health associations of spiritual community; and (3) recognize spirituality as a social factor associated with health in research, community assessments, and program implementation. Conclusions and Relevance: This systematic review, analysis, and process, based on highest-quality evidence available and expert consensus, provided suggested implications for addressing spirituality in serious illness and health outcomes as part of person-centered, value-sensitive care.

International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. On behalf of the Academy, these evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter.

American Academy of Nursing Expert Panel consensus statement on nursing's roles in ensuring universal palliative care access.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.

Advancing interprofessional education in communication.

OBJECTIVE: The objective of this training project is to develop and host Interprofessional Communication courses to improve interdisciplinary communication in oncology care. The initial national course was held in a virtual format and included pre- and post-course participant data. The curriculum was developed with support from the National Cancer Institute. METHODS: A virtual two-day course was held to equip nurses, social workers, and chaplains with vital communication skills in oncology practice, so that they could return to their home institutions and teach communication skills to other healthcare professionals, with the intention of making improved communication a quality improvement goal. Fifty-two participants were selected through an application process to attend the virtual course in two-person interprofessional teams (e.g., nurse and chaplain, or social worker and nurse). The Interprofessional Communication Curriculum was based on the National Consensus Project for Quality Palliative Care's eight domains of quality palliative care. The six online modules developed by the investigators were presented in lectures, supplemented by discussion groups, role plays, and other methods of experiential learning. RESULTS: Pre- and post-course results identified areas of communication, which are a priority for improvement by oncology clinicians. Participant goals identified specific strategies to be implemented by participants in their settings. SIGNIFICANCE OF RESULTS: The need for communication training was clearly demonstrated across professions in this national training course. Participants were able to apply course content to their goals for quality improvement in cancer settings.

Family Caregiving and Cancer Pain Management.

Family caregivers are centrally involved in cancer pain management, especially for patients with advanced disease. This issue is becoming ever more important as care shifts to the outpatient setting and home care and as the aging population creates more patients who have multiple illnesses and family caregivers who often live with serious illnesses. This narrative review evaluated current knowledge and literature regarding family caregivers' involvement in cancer pain management and identified areas for future research and clinical practice. There is a need for additional research in this area and for clinical models of support for family caregivers as they provide pain management for patients with cancer.

"I Often Just Don't Know what to Say!": Variations in Multidisciplinary Palliative Care Clinicians' Confidence and Needs Related to Spiritual Care.

BACKGROUND: Spiritual care is a core component of high-quality palliative care, yet gaps exist in spiritual care provision. Understanding clinicians' levels of confidence around spiritual care and their perceptions of necessary knowledge/skills to enhance their ability to provide spiritual care is foundational for improving delivery of spiritual care in practice. OBJECTIVES: To understand confidence levels with providing spiritual care and perceived needs in relation to the provision of spiritual care among palliative clinicians (nurses, social workers, chaplains). DESIGN: N = 260 clinicians participating in interprofessional communication and end-of-life care training programs completed a structured survey. MEASUREMENTS: Clinicians responded to 42 closed-ended questions assessing their confidence in engaging in spiritual care across 6 dimensions, and one open-ended question: "What areas of knowledge or skill would best help to improve your ability to provide spiritual care across diverse populations?" RESULTS: Findings reveal varied levels of confidence with spiritual care across dimensions. Chaplains reported the highest levels of confidence compared with nurses and social workers. Key areas of knowledge/skills to improve spiritual care provision were: (1) Training and support for clinicians in spiritual care; (2) Strategies for providing spiritual care to patients from diverse cultural and/or religious backgrounds; (3) Better understanding of specific populations and contexts that may affect spiritual care provision; and (4) Clinicians' personal growth & practices to improve spiritual care. CONCLUSIONS: Additional support with spiritual care provision is needed, especially among spiritual care generalists. A focus on culturally attuned care is needed, honoring unique patient contexts and centering patient and family priorities.

Palliative Care for Patients With Cancer: ASCO Guideline Update.

PURPOSE: To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer. METHODS: ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations. RESULTS: The literature search identified 52 relevant studies to inform the evidence base for this guideline. RECOMMENDATIONS: Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.

Relationship Between Quality of Life and Symptom Burden in Patients With Cancer With and Without HIV in Botswana.

Cancer is an emerging public health concern in sub-Saharan Africa. In Botswana, the most prevalent cancers are HIV related. The symptom burden that results from cancer and HIV infection is associated with poorer quality of li.

Palliative Care Clinician Perspectives on Person-Centered End-of-Life Communication for Racially and Culturally Minoritized Persons with Cancer.

The aim of this study was to examine interdisciplinary clinicians' perceptions of priorities in serious illness communication and shared decision-making with racially and culturally minoritized persons at end of life. Clinicians (N = 152) read a detailed case study about a patient self-identifying as Black and American Indian who describes mistrust of the healthcare system. Participants then responded to three open-ended questions about communication strategies and approaches they would employ in providing care. We conducted a thematic analysis of participants' responses to questions using an iterative, inductive approach. Interdisciplinary clinicians from nursing (48%), social work (36%), and chaplaincy (16%), responded to the study survey. A total of four themes emerged: (1) person-centered, authentic, and culturally-sensitive care; (2) pain control; (3) approaches to build trust and connection; and (4) understanding communication challenges related to racial differences. Significant efforts have been made to train clinicians in culturally inclusive communication, yet we know little about how clinicians approach "real world" scenarios during which patients from structurally minoritized groups describe care concerns. We outline implications for identifying unconscious bias, informing educational interventions to support culturally inclusive communication, and improving the quality of end-of-life care for patients with cancer from minoritized groups.

Interprofessional communication training to address spiritual aspects of cancer care.

Effective communication is essential for palliative care clinicians to provide quality spiritual care to cancer patients. Despite attention to spiritual needs having the potential to positively impact a patient's quality of life, clinicians continue to report a lack of confidence in addressing a patient's spiritual distress. This article addresses the development of a 3-day train-the-trainer communication cancer education program (ICC: Interprofessional Communication Curriculum) organized by the 8 domains of the National Consensus Project for Quality Palliative Care. The main objectives of ICC are to train adult oncology clinicians (nurses, social workers, and chaplains) in communication skills across all aspects of palliative care and to help prepare them to provide communication skills training to their colleagues at their home institutions. ICC participants attend in dyads consisting of differing disciplines and create 3 goals for implementing institutional change. To date, 126 participants (69 teams) have attended an ICC training. Pre-course survey results identified spiritual care as participants' least effective area of communication. Immediate post-course evaluation data revealed the spiritual care module and its subsequent lab session as the most useful sessions to participant's practice. Data from the 6-and-12-months post-course follow-up revealed participant's quality improvement projects focused heavily on improving spiritual care.

Care Processes and Quality-of-Life Outcomes Affecting the Gynecologic Cancer Survivorship Experience.

PURPOSE: To describe and assess physical and psychosocial concerns and care processes related to cancer and treatment in gynecologic cancer survivors. PARTICIPANTS & SETTING: 44 survivors of gynecologic cancer at City of Hope National Medical Center in southern California were enrolled. METHODOLOGIC APPROACH: A descriptive mixed-methods approach was used. Data were collected on survivorship care plan implementation, supportive care referrals, and barriers to receiving care. Participants completed questionnaires assessing quality of life, unmet needs, and other outcomes at three, six, and nine months after enrollment. Changes over time were analyzed, and quantitative and qualitative results were compared. FINDINGS: The most common unmet needs were stress reduction, side effect management, fear of cancer recurrence (FCR), and perception of adequate communication among the care team. Qualitative themes centered around communication, care coordination, FCR, financial distress, and need for information about peer support and healthy lifestyles. IMPLICATIONS FOR NURSING: Nurses play a key role in coordinating care, assessing symptoms, and addressing psychosocial concerns. Providing education and coaching can reduce stress and facilitate survivors' self-management and self-efficacy.

Outcomes of a National Training Curriculum to Advance Generalist Level Palliative Care.

Background: The adoption of palliative care as an integral component of health care has led to the need for generalist level providers, especially important in serious illnesses such as cancer. Objectives: The goals of this National Cancer Institute-funded training program were to (1) identify the eight domains of quality palliative care applied to oncology practice, (2) demonstrate skills for oncology advanced practice registered nurses (APRNs) in the domains of palliative care, and (3) develop goals for implementing the skills training in practice through process improvement, staff education, and clinical care. Design: The training program led by the End of Life Nursing Education Consortium (ELNEC) project included oncology APRNs in a three-day training course with one-year follow-up for ongoing support and to assess impact. Settings: Five training courses included 430 APRNs from 46 U.S states including both pediatric and adult oncology settings. The project included 25% minority participants. Measurement: Measures included participant goal implementation, course evaluations, and surveys to assess implementation and palliative care practices (precourse, 6 and 12 months postcourse). Results: The ELNEC oncology APRN training course resulted in changes in practice across domains, improved perceived effectiveness in clinical practice, and valuable insight regarding the challenges in generalist level palliative care implementation. Conclusion: The ELNEC oncology APRN course serves as a model for the palliative care field to advance generalist level practice. Future training efforts can build on this project to reach more oncology professionals and those in other areas of serious illness care.