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1.
J Clin Oncol ; : JCO2400542, 2024 May 15.
Article in English | MEDLINE | ID: mdl-38748941

ABSTRACT

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.

3.
Palliat Care Soc Pract ; 18: 26323524241253625, 2024.
Article in English | MEDLINE | ID: mdl-38800039

ABSTRACT

Background: Palliative care, which aims to alleviate physical and emotional distress from cancer, is underutilized in many African healthcare systems. Therefore, there is a lack of data on the need and utilization of palliative care services among women with breast cancer in Ethiopia. Objectives: The goal of this study was to identify the level of need and utilization of palliative care services and identify associated factors among women in an oncology department of Hawassa comprehensive and specialized hospitals. Design: Hospital-based cross-sectional study. Methods: A total of 121 women age ⩾18 years old with breast cancer participated from 1 August to 30 October 2021. A hospital-based consecutive sampling technique was used. Data regarding the need and utilization of palliative care services were collected via questionnaire and interview, entered using EpiData 4.6.0.6, and analyzed by SPSS version 25. Variables with p < 0.25 were considered for multivariate analysis, and those with p < 0.05 indicate an association with palliative care utilization. Result: Seventy-two (59.5%) had worse utilization of palliative care services, with higher odds in rural areas (adjusted odds ratio = 11.82). Conclusion: The study findings indicated that more than half of the study participants had worse utilization of palliative care services, with rural living being a contributing factor.

4.
J Palliat Med ; 2024 Apr 18.
Article in English | MEDLINE | ID: mdl-38634656

ABSTRACT

Patients with cancer and their families comprise a significant population served by palliative care. Close collaboration between oncology clinicians and palliative care teams has demonstrated improved patient-centered care, especially when this care is integrated early in the course of the disease. The American Society of Clinical Oncology recently released their updated clinical practice guidelines for palliative care in oncology, which provide new opportunities for collaboration to expand the scope of care.

5.
Psychooncology ; 33(1): e6221, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37743780

ABSTRACT

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.


Subject(s)
Caregivers , Neoplasms , Humans , Health Services , Neoplasms/therapy , Ambulatory Care Facilities
6.
Psychooncology ; 32(12): 1895-1904, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37929880

ABSTRACT

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.


Subject(s)
Homosexuality, Female , Sexual and Gender Minorities , Transgender Persons , Male , Adult , Female , Humans , Sexual Behavior , Bisexuality , Death
8.
Front Public Health ; 11: 1285419, 2023.
Article in English | MEDLINE | ID: mdl-38026333

ABSTRACT

Introduction: Social determinants of health (SDOH) are non-clinical factors that may affect the outcomes of cancer patients. The purpose of this study was to describe the influence of SDOH factors on quality of life (QOL)-related outcomes for lung cancer surgery patients. Methods: Thirteen patients enrolled in a randomized trial of a dyadic self-management intervention were invited and agreed to participate in semi-structured key informant interviews at study completion (3 months post-discharge). A conventional content analysis approach was used to identify codes and themes that were derived from the interviews. Independent investigators coded the qualitative data, which were subsequently confirmed by a second group of independent investigators. Themes were finalized, and discrepancies were reviewed and resolved. Results: Six themes, each with several subthemes, emerged. Overall, most participants were knowledgeable about the concept of SDOH and perceived that provider awareness of SDOH information was important for the delivery of comprehensive care in surgery. Some participants described financial challenges during treatment that were exacerbated by their cancer diagnosis and resulted in stress and poor QOL. The perceived impact of education varied and included its importance in navigating the healthcare system, decision-making on health behaviors, and more economic mobility opportunities. Some participants experienced barriers to accessing healthcare due to insurance coverage, travel burden, and the fear of losing quality insurance coverage due to retirement. Neighborhood and built environment factors such as safety, air quality, access to green space, and other environmental factors were perceived as important to QOL. Social support through families/friends and spiritual/religious communities was perceived as important to postoperative recovery. Discussion: Among lung cancer surgery patients, SDOH factors can impact QOL and the patient's survivorship journey. Importantly, SDOH should be assessed routinely to identify patients with unmet needs across the five domains. SDOH-driven interventions are needed to address these unmet needs and to improve the QOL and quality of care for lung cancer surgery patients.


Subject(s)
Lung Neoplasms , Quality of Life , Humans , Aftercare , Lung Neoplasms/surgery , Patient Discharge , Social Determinants of Health , Randomized Controlled Trials as Topic
9.
JAMA Netw Open ; 6(10): e2337250, 2023 10 02.
Article in English | MEDLINE | ID: mdl-37819661

ABSTRACT

Importance: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. Objective: To describe and characterize the availability of family caregiver support programs in US cancer centers. Design, Setting, and Participants: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer-accredited US cancer centers. Data analysis was performed in May and June 2023. Main Outcomes and Measures: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. Results: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ2 = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). Conclusions and Relevance: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.


Subject(s)
Caregivers , Neoplasms , Adult , Child , Humans , Caregivers/psychology , Cross-Sectional Studies , Parents , Self Care , Educational Status , Neoplasms/therapy
11.
Cancer Treat Res ; 187: 137-149, 2023.
Article in English | MEDLINE | ID: mdl-37851224

ABSTRACT

Nurses are the largest group of health and social care professionals globally and they are central to the provision of palliative care.


Subject(s)
Terminal Care , Humans , Palliative Care , Social Support , Death
12.
Support Care Cancer ; 31(10): 566, 2023 Sep 08.
Article in English | MEDLINE | ID: mdl-37682354

ABSTRACT

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.


Subject(s)
Communication , Neoplasms , Humans , Child , Concept Formation , Death , Emotions , Empathy , Neoplasms/therapy
13.
Oncol Nurs Forum ; 50(2): 185-200, 2023 02 17.
Article in English | MEDLINE | ID: mdl-37677803

ABSTRACT

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.


Subject(s)
Cancer Survivors , Genital Neoplasms, Female , Female , Humans , Survivorship , Quality of Life , Genital Neoplasms, Female/therapy , Survivors
14.
Clin J Oncol Nurs ; 27(1): 98-103, 2023 01 25.
Article in English | MEDLINE | ID: mdl-37677826

ABSTRACT

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.


Subject(s)
HIV Infections , Neoplasms , Humans , Quality of Life , Botswana/epidemiology , HIV Infections/complications , HIV Infections/epidemiology , Patients
15.
J Hosp Palliat Nurs ; 25(5): 235-236, 2023 Oct 01.
Article in English | MEDLINE | ID: mdl-37691175
16.
Cancers (Basel) ; 15(16)2023 Aug 12.
Article in English | MEDLINE | ID: mdl-37627105

ABSTRACT

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.

17.
ASAIO J ; 69(11): 1009-1015, 2023 11 01.
Article in English | MEDLINE | ID: mdl-37549652

ABSTRACT

Palliative care (PC) is a model of care centered around improving the quality of life for individuals with life-limiting illnesses. Few studies have examined its impact in patients on extracorporeal membrane oxygenation (ECMO). We aimed to describe demographics, clinical characteristics, and complications associated with PC consultation in adult patients requiring ECMO support. We analyzed data from an ECMO registry, including patients aged 18 years and older who have received either venoarterial (VA)- or venovenous (VV)-ECMO support between July 2016 and September 2021. We used analysis of variance and Fisher exact tests to identify factors associated with PC consultation. Of 256, 177 patients (69.1%) received VA-ECMO support and 79 (30.9%) received VV-ECMO support. Overall, 115 patients (44.9%) received PC consultation while on ECMO. Patients receiving PC consultation were more likely to be non-white (47% vs. 53%, p = 0.016), have an attending physician from a medical versus surgical specialty (65.3% vs. 39.6%), have VV-ECMO (77.2% vs. 30.5%, p < 0.001), and have longer ECMO duration (6.2 vs. 23.0, p < 0.001). Patients were seen by the PC team on an average of 7.6 times (range, 1-35), with those who died having significantly more visits (11.2 vs. 5.6, p < 0.001) despite the shorter hospital stay. The average time from cannulation to the first PC visit was 5.3 ± 5 days. Congestive heart failure in VA-ECMO, coronavirus disease 2019 infection in VV-ECMO, and non-white race and longer ECMO duration for all patients were associated with PC consultation. We found that despite the benefits of PC, it is underused in this population.


Subject(s)
Extracorporeal Membrane Oxygenation , Heart Failure , Adult , Humans , Extracorporeal Membrane Oxygenation/adverse effects , Palliative Care , Quality of Life , Retrospective Studies , Heart Failure/therapy
18.
J Thorac Dis ; 15(5): 2824-2835, 2023 May 30.
Article in English | MEDLINE | ID: mdl-37324097

ABSTRACT

Background: Lung cancer is the leading cause of cancer death globally. Both lung cancer patients and family caregivers (FCGs) have unmet quality of life (QOL) needs. An understudied topic in lung cancer research is the role of social determinants of health (SDOH) on QOL outcomes for this population. The purpose of this review was to explore the state of research on SDOH FCGs centered outcomes in lung cancer. Methods: The databases PubMed/MEDLINE, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature, and American Psychological Association (APA) PsycInfo were searched for peer-reviewed manuscripts evaluating defined SDOH domains on FCGs published within the last ten years. The information extracted using Covidence included patients, FCGs and study characteristics. Level of evidence and quality of articles were assessed using the Johns Hopkins Nursing Evidence-Based Practice Rating Scale. Results: Of the 344 full-text articles assessed, 19 were included in this review. The social and community context domain focused on caregiving stressors and interventions to reduce its effects. The health care access and quality domain showed barriers and underuse of psychosocial resources. The economic stability domain indicated marked economic burdens for FCGs. Four interconnected themes emerged among articles on the influence of SDOH on FCG-centered outcomes in lung cancer: (I) psychological well-being, (II) overall quality of life, (III) relationship quality, and (IV) economic hardship. Notably, most participants in the studies were White females. The tools used to measure SDOH factors included primarily demographic variables. Conclusions: Current studies provide evidence on the role of SDOH factors on lung cancer FCGs' QOL. Expanded utilization of validated SDOH measures in future studies would provide greater consistency in data, that could in turn inform interventions to improve QOL. Further research focusing on the domains of education quality and access and neighborhood and built environment should be carried out to bridge gaps in knowledge.

19.
J Hosp Palliat Nurs ; 25(3): 115, 2023 Jun 01.
Article in English | MEDLINE | ID: mdl-37150882
20.
J Hosp Palliat Nurs ; 25(2): 51-52, 2023 Apr 01.
Article in English | MEDLINE | ID: mdl-36872518
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