The Use of Palliative Therapy in Patients With Advanced Retroperitoneal Sarcoma.

INTRODUCTION: Advanced retroperitoneal sarcoma (RPS) can include unresectable locoregional disease, systemic or multifocal intra-abdominal metastasis, or abdominal sarcomatosis, all of which are associated with high morbidity and may be addressed through palliative therapy. Current trends in the use of palliative therapy and factors associated with its use in patients with advanced RPS remain largely unexplored. The objectives of this study are to (1) describe the temporal trend in the use of palliative therapy and (2) identify factors associated with its use in patients with advanced RPS in the United States from 2004 to 2020. METHODS: This study is a retrospective cohort study using the National Cancer Database. We identified adult patients who were diagnosed with advanced RPS (American Joint Committee on Cancer stages III and IV) from 2004 to 2020. We performed a trend analysis to describe the use of palliative therapy over time, followed by univariable and multivariable logistic regression analyses to identify predictors of palliative therapy use in this patient population. RESULTS: A total of 6149 patients with advanced RPS were identified, of which only 383 used palliative therapy, including surgery (n = 28), radiation therapy (n = 87), systemic therapy (n = 115), pain management (n = 61), combination therapy (n = 55), or other palliative therapy (n = 37). The proportion of patients using palliative therapy increased significantly from 2.6% in 2004 to 6.5% in 2020 (Ptrend < 0.001). On multivariable logistic regression, age (odds ratio [OR] 1.03, 95 confidence interval [CI] 1.01-1.04), year of diagnosis (OR 1.05, 95 CI 1.02-1.08), lack of insurance (OR 2.18, 95 CI 1.17-4.04), community cancer program status (OR 1.83, 95 CI 1.05-3.19), stage IV disease (OR 5.19, 95 CI 4.49-7.79), and rhabdomyosarcoma (OR 2.75, 95 CI 1.32-5.72) histology were found to be predictors of palliative therapy use. CONCLUSIONS: This study sheds light on the evolving landscape of palliative therapy use for patients with advanced RPS in the United States from 2004 to 2020. The observed gradual increase in the use of palliative therapy underscores the growing recognition of its importance in managing the unique challenges associated with this complex disease. Despite this positive trend, the persistently low overall rates highlight the need for further efforts to enhance awareness and accessibility of palliative therapy for this patient population.

Exploring patients' needs and expectations for information on sexual dysfunction after rectal cancer treatment: A qualitative study.

AIM: Sexual dysfunction is an important, and often overlooked, sequela of rectal cancer treatment with significant implications for patients' quality of life. The aim of this study was to explore patients' information needs regarding sexual health after rectal cancer treatment and their experiences accessing information on sexual dysfunction throughout the cancer care continuum. The secondary aim was to explore surgeons' perspectives on patients' information needs and gain insight into their experiences providing information on sexual health following rectal cancer surgery. METHOD: A qualitative study was conducted using semistructured interviews with 10 rectal cancer survivors and six colorectal surgeons from a Canadian tertiary care institution. Transcribed interviews were coded independently by two researchers and thematic analysis was performed. RESULTS: Analysis of patient interviews revealed that patients had limited knowledge of sexual dysfunction symptoms following rectal cancer treatment and received inadequate information on sexual dysfunction from their treating medical team. Patients expressed the desire to receive information on sexual dysfunction in different formats, especially before the start of treatment. The surgeon interviews revealed that colorectal surgeons faced challenges when informing patients about sexual dysfunction. Surgeons did not routinely provide information on sexual dysfunction to all patients; however, they felt that patients should receive high-quality information on sexual dysfunction, both before and after treatment. CONCLUSION: Patients' information needs related to sexual dysfunction after rectal cancer treatment were inadequately met. High-quality informational resources are needed to facilitate communication between patients and physicians and improve patients' understanding of sexual dysfunction.

Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC): a study protocol for a hybrid type 1 randomized controlled trial.

BACKGROUND: There are persistent racial and ethnic health disparities in end-of-life health outcomes in the United States. African American patients are less likely than White patients to access palliative care, enroll in hospice care, have documented goals of care discussions with their healthcare providers, receive adequate symptom control, or die at home. We developed Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC) to address these disparities. DeCIDE PC is an integrated community health worker (CHW) palliative care intervention that uses community health workers (CHWs) as care team members to enhance the receipt of palliative care for African Americans with advanced cancer. The overall objectives of this study are to (1) assess the effectiveness of the DeCIDE PC intervention in improving palliative care outcomes amongst African American patients with advanced solid organ malignancy and their informal caregivers, and (2) develop generalizable knowledge on how contextual factors influence implementation to facilitate dissemination, uptake, and sustainability of the intervention. METHODS: We will conduct a multicenter, randomized, assessor-blind, parallel-group, pragmatic, hybrid type 1 effectiveness-implementation trial at three cancer centers across the United States. The DeCIDE PC intervention will be delivered over 6 months with CHW support tailored to the individual needs of the patient and caregiver. The primary outcome will be advance care planning. The treatment effect will be modeled using logistic regression. The secondary outcomes are quality of life, quality of communication, hospice care utilization, and patient symptoms. DISCUSSION: We expect the DeCIDE PC intervention to improve integration of palliative care, reduce multilevel barriers to care, enhance clinic and patient linkage to resources, and ultimately improve palliative care outcomes for African American patients with advanced cancer. If found to be effective, the DeCIDE PC intervention may be a transformative model with the potential to guide large-scale adoption of promising strategies to improve palliative care use and decrease disparities in end-of-life care for African American patients with advanced cancer in the United States. TRIAL REGISTRATION: Registered on ClinicalTrials.gov (NCT05407844). First posted on June 7, 2022.

Interactive online informational and peer support application for patients with low anterior resection syndrome: patient survey and protocol for a multicentre randomized controlled trial.

AIM: Low anterior resection syndrome (LARS) refers to a constellation of bowel symptoms that affect the majority of patients following restorative proctectomy. LARS is associated with poorer quality of life (QoL), and can lead to distress, anxiety and isolation. Peer support could be an important resource for people living with LARS, helping them normalize and validate their experience. The aim of this work is to describe the development of an interactive online informational and peer support app for LARS and the protocol for a randomized controlled trial. METHOD: A multicentre, randomized, assessor-blind, parallel-groups pragmatic trial will involve patients from five large colorectal surgery practices across Canada. The trial will evaluate the impact of an interactive online informational and peer support app for LARS, consisting of LARS informational modules and a closed forum for peers and trained peer support mentors, on patient-reported outcomes of people living with LARS. The primary outcome will be global QoL at 6 months following app exposure. The treatment effect on global QoL will be modelled using generalized estimating equations. Secondary outcomes will include patient activation and bowel function as measured by LARS scores. RESULTS: In order to better understand patients' interest and preferences for an online peer support intervention for LARS, we conducted a single institution cross-sectional survey study of rectal cancer survivors. In total, 35/69 (51%) participants reported interest in online peer support for LARS. Age <65 years (OR 9.1; 95% CI 2.3-50) and minor/major LARS (OR 20; 95% CI 4.2-100) were significant predictors of interest in LARS online peer support. CONCLUSION: There is significant interest in the use of online peer support for LARS among younger patients and those with significant bowel dysfunction. Based on results of the needs assessment study, the app content and features were modified reflect patients' needs and preferences. We are now in an optimal position to rigorously test the potential effects of this initiative on patient-centered outcomes using a randomized controlled trial.

"Will you need this health at all? Will you be alive?": using the bioecological model of mass trauma to understand HIV care experiences during the war in Ukraine.

INTRODUCTION: Russia's invasion of Ukraine in February 2022 has severely impacted the healthcare system, including the provision of HIV care. The ongoing war is a human-caused mass trauma, a severe ecological and psychosocial disruption that greatly exceeds the coping capacity of the community. The bioecological model of mass trauma builds on Bronfenbrenner's concept of interaction between nested systems to argue that social context determines the impact of life events on the individual and how an individual responds. This paper uses the bioecological model of mass trauma to explore the impact of Russia's aggression against Ukraine and the ongoing war on HIV-positive people who use drugs in Ukraine, a particularly vulnerable population that may be negatively affected by disruptions to social networks, healthcare infrastructure and economic conditions caused by mass trauma. METHODS: Data were collected between September and November 2022. A convenience sample of 18 HIV-positive people who use drugs were recruited from community organizations that work with people living with HIV, drug treatment programmes, and HIV clinics through direct recruitment and participant referral. A total of nine men and nine women were recruited; the age ranged from 33 to 62 years old (mean = 46.44). Participants completed a single interview that explored how the war had affected their daily lives and access to HIV care and other medical services; their relationships with healthcare providers and social workers; and medication access, supply and adherence. Data were analysed using the Framework Method for thematic analysis. RESULTS: The war had a profound impact on the social, emotional and financial support networks of participants. Changes in social networks, coupled with limited job opportunities and rising prices, intensified financial difficulties for participants. Relocating to different regions of Ukraine, staying at somebody else's home, and losing connections with social workers impacted medication adherence and created lengthy treatment gaps. Participants also experienced a decreased supply of antiretroviral therapy, concerns about accessing medication for opioid use disorder, and overwhelming fears associated with the war, which overshadowed their HIV-related health concerns and negatively impacted medication adherence. CONCLUSIONS: Our analysis reveals the complex impact of war on social networks and healthcare access. Maintaining support networks and competent healthcare providers will be essential amid the ongoing war.

African American patient and caregiver attitudes and perceptions of community health workers as lay patient navigators in palliative care.

BACKGROUND: Concurrent palliative care for patients with advanced cancer has been shown to reduce physical and psychological symptoms, and improve the quality of life of patients with advanced cancer. Underutilization of palliative care services, especially among African American patients with advanced cancer, remains an important public health problem. To address this gap, we developed a community health worker (CHW) palliative care intervention for African American patients with advanced cancer, which is being formally assessed through an ongoing effectiveness-implementation trial (NCT05407844). As part of the preparatory phase of this study, we conducted qualitative interviews with African American patients with advanced cancer and their caregivers. The objective of this analysis was to explore patient and caregiver attitudes and perceptions of the CHW palliative care intervention to support African American patients with advanced cancer in accessing palliative care. METHODS: We used purposive sampling to identify African American patients with advanced cancer and their informal caregivers from clinic lists and through referring oncologists. We conducted six individual and group semi-structured interviews with patients and caregivers between November 2022 and April 2023 at three enrollment sites: Johns Hopkins Hospital, TidalHealth Peninsula Regional, and University of Alabama at Birmingham Hospital. The interview guide was informed by the Consolidated Framework for Implementation Research, with a focus on the Innovation and Inner Setting domains. We used the framework method for thematic analysis. RESULTS: Overall, there was a lack of awareness and understanding of palliative care, due primarily to limited experiences with palliative care services among study participants. Despite this lack of familiarity, participants recognized the potential benefits of palliative care for patients with advanced cancer. All study participants were enthusiastic about the concept of patient navigation and the CHW palliative care intervention, with CHWs as lay patient navigators in palliative care. When reflecting on their own experiences, patients and their caregivers identified several areas where CHWs may have supported their cancer care, such as care coordination. Study participants viewed the CHW palliative care intervention as fulfilling a need within the African American community. Participants also made intervention delivery recommendations related to CHW characteristics, training and integration, and communication. CONCLUSIONS: This study provides evidence for the acceptability of a CHW palliative care intervention for African American patients with advanced cancer and their caregivers. The findings of this study have led to intervention refinement, which will enhance implementation, delivery, and sustainability of the intervention.

Implementation Barriers and Recommendations for a Multisite Community Health Worker Intervention in Palliative Care for African American Oncology Patients: A Qualitative Study.

Background: Palliative care remains underutilized by African American patients with advanced cancer. Community health workers (CHWs) may help improve palliative care outcomes among this patient population. Objectives: To explore barriers to success of a proposed CHW intervention and synthesize design and implementation recommendations to both optimize our intervention and inform others working to alleviate palliative care disparities. Design: Semi-structured qualitative interviews. Setting/Subjects: Key informants were health care professionals across clinical, leadership, and community health fields. Participants were recruited through purposive sampling from Baltimore, Maryland; Birmingham, Alabama; and Salisbury, Maryland. Measurements: Interviewers used an interview guide grounded in established implementation science models. Data were analyzed through a combined abductive/deductive approach by independent coders. A framework methodology was used to facilitate thematic analysis. Results: In total, 25 professionals completed an interview. Key informants discussed multiple barriers, including at the patient level (lack of knowledge), clinician and facility level (decreased workflow efficiency), and health system level (limited funding). Recommendations related to the intervention's design included high quality preintervention CHW training and full integration of CHWs into the care team to "bridge" divides between outpatient, inpatient, and at-home settings. Intervention delivery recommendations included clearly defining care team roles and balancing flexibility and standardization in CHW support approaches. These recommendations were then used to adapt the planned intervention and its implementation process. Conclusions: Clinicians, cancer center leaders, and CHWs identified multilevel potential barriers to the intervention's success but also described recommendations that may mitigate these barriers. Key informant input represents an important step prior to initiating CHW-based interventions.

Palliative Care Curriculum and Training Plan for community health workers.

African American patients are less likely than White patients to access palliative care. Community health workers (CHWs) are non-clinical public health workers who may address this gap. We developed a Palliative Care Curriculum and Training Plan for CHWs as part of an ongoing randomised controlled trial evaluating the effectiveness of a CHW palliative care intervention for African American patients with advanced cancer. This study aimed to determine whether the Palliative Care Curriculum and Training Plan leads to gains in knowledge, perceived competence on CHW study-based tasks, and satisfaction among CHWs. The curriculum was delivered over 3 months using synchronous, asynchronous and experiential training components. CHWs were assessed through survey questionnaires and semistructured interviews. We trained a total of three CHWs, one from each of our enrolment sites: Johns Hopkins Hospital, TidalHealth Peninsula Regional and University of Alabama at Birmingham Hospital. CHWs demonstrated an increase in knowledge, with a mean pre-training test score of 85% (SD 10.49) and post-training test score of 96% (SD 4.17). The training led to increases in perceived competence among CHWs. Areas for future training were identified. This curriculum serves as a template for CHW training focused on palliative care, oncology and health disparities.

Palliative interventions for patients with advanced gastric cancer: a systematic review.

BACKGROUND: Gastric cancer is the fifth most common cancer and the third leading cause of cancer-related death worldwide. Advanced gastric cancer (AGC) is associated with significant morbidity and mortality and is commonly accompanied by a variety of distressing symptoms. Current National Comprehensive Cancer Network (NCCN) guidelines recommend palliative treatment modalities for patients with AGC and the treatment of AGC patients should be influenced by palliative care principles. The objective of this systematic review was to explore the published literature on palliative interventions for patients with AGC. METHODS: We performed a systematic literature search to identify English language studies that investigated interventions to improve or treat the symptoms caused by AGC using PubMed, Embase, and Cochrane Library databases from January 1, 2010 to August 18, 2022. Two independent reviewers performed title and abstract review, followed by full-text review and data abstraction. Overall study quality and risk of bias was assessed using published quality assessment tools. RESULTS: We identified 10,364 studies and included 66 studies published between 2010 and 2022 for final review. Among the studies, quality of life (QoL) metrics were most commonly a secondary outcome. Twenty-three studies addressed the palliative management of bleeding with the use of radiation therapy, surgery, arterial embolization, chemotherapy, or endoscopic interventions. Twenty-two studies addressed the management of obstructive symptoms with endoscopic stenting or surgical interventions. Most of these studies were of moderate quality and included well characterized outcomes focused on symptom reduction. Five studies assessed palliative modalities to reduce the symptomatic burden of intraabdominal ascites; these studies were less well characterized, and on average low quality. Fifteen studies of mixed quality assessed QoL for patients with AGC, with only one study evaluating specialty palliative care consultation. No studies outlined the prevalence or practices of advanced care planning in this patient population. CONCLUSIONS: Patients with AGC undergo a variety of interventions aimed at palliating the symptoms associated with their diagnosis and improving their QoL. Future research on palliative interventions for patients with AGC should utilize qualitative methodologies to measure outcomes related to symptom management and QoL, further explore the patient experience of living with AGC, and delineate best practices for advanced care planning in this population.

An evaluation of the suitability, readability, quality, and usefulness of online resources for family caregivers of patients with cancer.

OBJECTIVE: Evaluate the suitability, readability, quality, and usefulness of publicly available online resources for cancer caregivers. METHODS: Resources identified through a Google search and environmental scan were evaluated using the Suitability Assessment of Materials (SAM), an online readability text analysis tool, the DISCERN (quality), and caregivers' unmet needs checklist (usefulness). Descriptive analyses and cluster analysis to identify the group of resources with the highest SAM and DISCERN scores were performed. RESULTS: 55 resources were evaluated. The suitability of 48/55 (87%) resources were categorized as adequate (SAM scores 40-69), with no resources ranking in the superior category (SAM scores > 70%). The readability of 51/55 (93%) resources exceeded 9th grade reading level. The mean quality score as a percentage was 49% (SD 11.5). On average resources addressed 9.9/33 unmet needs (SD = 5.8). A high-quality cluster was identified and included 15 (27%) websites. CONCLUSION: Online resources for cancer caregivers are not optimal in terms of their suitability, readability, quality, and usefulness. The highest ranked resources include, Cancer Council Australia's booklet, Caring for Someone with Cancer, and the American Cancer Society's webpages, Caregivers and Families. PRACTICE IMPLICATIONS: Study findings will allow healthcare professionals to better address cancer caregivers' needs by recommending the most optimal resources.