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BACKGROUND: Symptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an Other problem. METHODS: This retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one Other problem. Seven similar symptoms were listed in both versions. RESULTS: In 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and

Purpose: Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer. Methods: AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all "source of support" and "type of support" codes. We assigned a global "sufficiency of support code" to each AYA. Results: We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having "mixed support" and described a lack of support in some domains. Conclusion: AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group. [ABSTRACT FROM AUTHOR]

Abstract Purpose Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer. Methods AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all “source of support” and “type of support” codes. We assigned a global “sufficiency of support code” to each AYA. Results We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having “mixed support” and described a lack of support in some domains. Conclusion AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group.

Abstract Background This study aimed to investigate the trends of aggressive care at the end-of-life (EoL) for patients with advanced cancer in Korea and to identify factors affecting such care analyzing nationwide data between 2012 to 2018. Methods This was a population-based, retrospective nationwide study. We used administrative data from the National Health Insurance Service and the Korea Central Cancer Registry to analyze 125,350 patients aged 20 years and above who died within one year of a stage IV cancer diagnosis between 2012 and 2018. Results The overall aggressiveness of EoL care decreased between 2012 and 2018. In patients’ last month of life, chemotherapy use (37.1% to 32.3%; p

Abstract Background An accurate perception of death risk is a prerequisite for advanced cancer patients to make informed end-of-life care decisions. However, there is to date no suitable scale to measure death risk perception. This study was to develop and psychometrically test the death risk perception scale (DRPS) for advanced cancer patients. Methods Process of instrument development and psychometric evaluation were used. First, qualitative research, a literature review, brainstorming, a Delphi study, and cognitive interviews were conducted to construct a pretest scale of death risk perception. Second, a scale-based survey was administered to 479 advanced cancer patients. Item, exploratory factor, and confirmatory factor analyses were employed to optimize the scale. The Cronbach’s alpha was calculated as a reliability analysis. The validity analysis included construct, convergent, discriminant, and content validity values. Results A three-dimension, 12-item scale was developed, including deliberative, affective, and experiential risk perception. The confirmatory factor analysis supported the three-factor model with satisfactory convergent and discriminant validity levels. The Cronbach's alpha coefficient for internal consistency was 0.807 and scale-level content validity index was 0.98. Conclusions The 12-item DRPS is a reliable and valid instrument for assessing the level of death risk perception in advanced cancer patients. More studies are needed to examine its structure and robustness prior to use.

Abstract Objectives To gain insight into the perceptions, and beliefs of patients with advanced cancer coping with chronic pain and to identify their attitudes and demands on pain management. Methods From July to September 2022, 17 patients with advanced cancer living with chronic pain were recruited from a tertiary cancer hospital in Hunan Province, China. Qualitative and semi-structured interviews were conducted individually, with 30-45 minutes for each. The Colaizzi 7-step analysis method in phenomenological research was used for data analysis. Results The experience of pain acceptance by advanced cancer patients with chronic pain was summarized into four themes: pain catastrophizing (unable to ignore the pain, try various methods to relieve the pain, exaggerating pain perception, and lack of knowledge about proper pain management), rumination (compulsive rumination and worrying rumination), avoidance coping (situational avoidance and repressive avoidance) and constructive action (setting clear value goal and taking reciprocal action). Conclusion Most patients with advanced cancer had low pain acceptance and negative attitudes. Feeling helpless in the face of pain and suffering alone were their norm. Long-term negative emotions could lead to gradual depression and loss of hope for treatment, resulting in pain catastrophizing and persistent rumination. Nevertheless, a few patients accepted pain with positive attitudes. Medical professionals should pay more attention to the psychological status of advanced cancer patients with chronic pain, and employ alternative therapies, for example, cognitive behavioral therapy. More efforts are needed to reduce patients’ pain catastrophizing, and promote their pain acceptance by a better understanding of pain through health education.

Background: An accurate perception of death risk is a prerequisite for advanced cancer patients to make informed end-of-life care decisions. However, there is to date no suitable scale to measure death risk perception. This study was to develop and psychometrically test the death risk perception scale (DRPS) for advanced cancer patients. Methods: Process of instrument development and psychometric evaluation were used. First, qualitative research, a literature review, brainstorming, a Delphi study, and cognitive interviews were conducted to construct a pretest scale of death risk perception. Second, a scale-based survey was administered to 479 advanced cancer patients. Item, exploratory factor, and confirmatory factor analyses were employed to optimize the scale. The Cronbach's alpha was calculated as a reliability analysis. The validity analysis included construct, convergent, discriminant, and content validity values. Results: A three-dimension, 12-item scale was developed, including deliberative, affective, and experiential risk perception. The confirmatory factor analysis supported the three-factor model with satisfactory convergent and discriminant validity levels. The Cronbach's alpha coefficient for internal consistency was 0.807 and scale-level content validity index was 0.98. Conclusions: The 12-item DRPS is a reliable and valid instrument for assessing the level of death risk perception in advanced cancer patients. More studies are needed to examine its structure and robustness prior to use. [ABSTRACT FROM AUTHOR]

Background: This study aimed to investigate the trends of aggressive care at the end-of-life (EoL) for patients with advanced cancer in Korea and to identify factors affecting such care analyzing nationwide data between 2012 to 2018. Methods: This was a population-based, retrospective nationwide study. We used administrative data from the National Health Insurance Service and the Korea Central Cancer Registry to analyze 125,350 patients aged 20 years and above who died within one year of a stage IV cancer diagnosis between 2012 and 2018. Results: The overall aggressiveness of EoL care decreased between 2012 and 2018. In patients' last month of life, chemotherapy use (37.1% to 32.3%; p < 0.05), cardiopulmonary resuscitation (13.2% to 10.4%; p < 0.05), and intensive care unit admission (15.2% to 11.1%; p < 0.05) decreased during the study period, although no significant trend was noted in the number of emergency room visits. A steep increase was seen in inpatient hospice use in the last month of life (8.6% to 26.6%; p < 0.05), while downward trends were observed for hospice admission within three days prior to death (13.9% to 11%; p < 0.05). Patients were more likely to receive aggressive EoL care if they were younger, women, had treatment in tertiary hospitals, or had hematologic malignancies. In the subgroup analysis, the overall trend of aggressive EoL care decreased for all five major cancer types. Conclusion: The aggressiveness of EoL care in stage IV cancer patients showed an overall decrease during 2012–2018 in Korea. [ABSTRACT FROM AUTHOR]

Objectives: To gain insight into the perceptions, and beliefs of patients with advanced cancer coping with chronic pain and to identify their attitudes and demands on pain management. Methods: From July to September 2022, 17 patients with advanced cancer living with chronic pain were recruited from a tertiary cancer hospital in Hunan Province, China. Qualitative and semi-structured interviews were conducted individually, with 30-45 minutes for each. The Colaizzi 7-step analysis method in phenomenological research was used for data analysis. Results: The experience of pain acceptance by advanced cancer patients with chronic pain was summarized into four themes: pain catastrophizing (unable to ignore the pain, try various methods to relieve the pain, exaggerating pain perception, and lack of knowledge about proper pain management), rumination (compulsive rumination and worrying rumination), avoidance coping (situational avoidance and repressive avoidance) and constructive action (setting clear value goal and taking reciprocal action). Conclusion: Most patients with advanced cancer had low pain acceptance and negative attitudes. Feeling helpless in the face of pain and suffering alone were their norm. Long-term negative emotions could lead to gradual depression and loss of hope for treatment, resulting in pain catastrophizing and persistent rumination. Nevertheless, a few patients accepted pain with positive attitudes. Medical professionals should pay more attention to the psychological status of advanced cancer patients with chronic pain, and employ alternative therapies, for example, cognitive behavioral therapy. More efforts are needed to reduce patients' pain catastrophizing, and promote their pain acceptance by a better understanding of pain through health education. [ABSTRACT FROM AUTHOR]

Abstract Background Symptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an “Other problem”. Methods This retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one “Other problem”. Seven similar symptoms were listed in both versions. Results In 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and

Abstract Background Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. Methods This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants’ experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. Discussion This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

Background: Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. Methods: This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. Discussion: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally. [ABSTRACT FROM AUTHOR]

Abstract 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.

Abstract Objectives Advanced cancer patients face various symptoms, which can cause physical and psychological distress. As a multidimensional construct, spiritual well-being (SWB) may be an inner resource for dealing with these problems. Our study explored the impact of different dimensions of SWB on physical and psychological symptoms in advanced cancer patients admitted to a palliative care unit. Methods This cross-sectional study was conducted among 108 advanced cancer patients in the Hospice Ward, Shengjing Hospital of China Medical University. Patients completed questionnaires on SWB and cancer-related symptoms (insomnia, fatigue, pain, depression and anxiety) at the time of admission. Linear regression analysis was applied to determine the relationship between SWB (meaning, peace and faith) and symptom distress. Results SWB accounted for an additional variance of cancer-related symptoms (17.8% to 44.4%). Meaning was negatively associated with insomnia (β = -0.516, p < 0.001) and fatigue (β = -0.563, p < 0.001). Peace and faith were related to lower psychological symptoms, while meaning represented a positive effect on anxiety (β = 0.275, p = 0.036). Higher peace was associated with lower cancer pain (β = -0.422, p < 0.001). Conclusions Our findings suggested that achieving peace and faith appeared to function consistently as a positive resource for advanced cancer patients on depression, anxiety and pain, while meaning may serve to facilitate or hinder positive adjustment. Future studies should focus on the potential clinical implications by identifying the distinct dimension of SWB as symptom management targets in the palliative care practice.

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. [ABSTRACT FROM AUTHOR]

Objectives: Advanced cancer patients face various symptoms, which can cause physical and psychological distress. As a multidimensional construct, spiritual well-being (SWB) may be an inner resource for dealing with these problems. Our study explored the impact of different dimensions of SWB on physical and psychological symptoms in advanced cancer patients admitted to a palliative care unit. Methods: This cross-sectional study was conducted among 108 advanced cancer patients in the Hospice Ward, Shengjing Hospital of China Medical University. Patients completed questionnaires on SWB and cancer-related symptoms (insomnia, fatigue, pain, depression and anxiety) at the time of admission. Linear regression analysis was applied to determine the relationship between SWB (meaning, peace and faith) and symptom distress. Results: SWB accounted for an additional variance of cancer-related symptoms (17.8% to 44.4%). Meaning was negatively associated with insomnia (β = -0.516, p < 0.001) and fatigue (β = -0.563, p < 0.001). Peace and faith were related to lower psychological symptoms, while meaning represented a positive effect on anxiety (β = 0.275, p = 0.036). Higher peace was associated with lower cancer pain (β = -0.422, p < 0.001). Conclusions: Our findings suggested that achieving peace and faith appeared to function consistently as a positive resource for advanced cancer patients on depression, anxiety and pain, while meaning may serve to facilitate or hinder positive adjustment. Future studies should focus on the potential clinical implications by identifying the distinct dimension of SWB as symptom management targets in the palliative care practice. [ABSTRACT FROM AUTHOR]

Abstract Background Cancer is the third highest cause of death in Kenya. Eighty percent of cancer cases arrive at advanced stages, when there is nothing that can be done to cure them, and palliative care is the best alternative. Although the majority of end-of-life care in Kenya is provided at home, little is known about the caregivers’ preparedness, resilience and continued unmet needs. The goal of this qualitative study was to explore caregivers’ perceived preparedness, resilience and continued unmet needs in their caregiving role to patients with advanced stages of cancer. Methods A purposive sampling method was used to identify and recruit twelve informal, home-based caregivers of patients with advanced cancer from Kijabe Palliative Clinic data base. Interviews were conducted in patients' homes. The data was analyzed using interpretive phenomenological analysis approach. Ethical considerations were observed. Participants were kept anonymous and confidentiality. Results Competing tasks, lack of preparedness in handling end-of-life care for patients in advanced stages of cancer were the main concerns. Continued unmet needs and financial stresses, and vulnerability for female caregivers all contributed to increased caregiver burden in this study. Caregivers were however determined and resilient amidst challenges that faced them, they exhibited hope against hopelessness. Some caregivers were vulnerable and faced potential for abuse following anticipated loss of their family member exacerbated psychosocial stress and needs Conclusion Informal caregivers had common unmet needs related to caring for their advanced cancer patients. Whilst family caregivers had huge caregiver burden, insurmountable practical challenges related to role overload and competing tasks, they remained resilient though unprepared in giving end of life care. Recommendations Caregivers should also be examined, prepared, and supported during clinic reviews. More research is needed on the use of telephones for caregiver follow-up, the impact of introducing caregiver-targeted screening tools on caregiver quality of life and their impact on enhancing caregiver well-being in order to prepare & support them adequately for the caregiving role.

Abstract Background The tremendous physical and mental burden that comes with caregiving puts the intimate partners of patients diagnosed with advanced cancer at risk for mental disorders. However, most partners seem to be protected by resilience. Such a resilience process is promoted by certain individual characteristics (e.g., flexibility, positive attitude, internal strength, capacity to balance incoming and outgoing information, and ability to ask for and accept support and advice) and by the availability of a support network, consisting of family, friends, and healthcare professionals. Such a heterogeneous group striving towards the same goals can be considered a complex adaptive system (CAS), a concept stemming from complexity science. Aims To study the behavior of the support network through the lens of complexity science and to provide insights to the means by which an available network may promote resilience. Methods Nineteen interviews with members from the support networks of eight intimate partners were analyzed deductively using the CAS principles as a coding framework. Subsequently, the quotes under each principle were coded inductively to concretize patterns in the behavior of the support networks. Eventually, the codes were charted into a matrix to identify intra- and inter-CAS similarities, differences, and patterns. Findings The network’s behavior adapts dynamically to the changing circumstances as the patient’s prognosis worsens. Furthermore, the behavior is based on internalized basic rules (such as reassuring availability and maintaining communication without being intrusive), attractors (e.g., feeling meaningful, appreciated, or connected), and the history of the support network. However, the interactions are non-linear and often unpredictable due to the context member’s own concerns, needs, or emotions. Conclusions Applying the lens of complexity science to the behavior of an intimate partner’s support network gives us insight into the network’s behavioral patterns. Indeed, a support network is a dynamic system that behaves according to the principles of a CAS and adapts resiliently to the changing circumstances as the patient’s prognosis worsens. Moreover, the behavior of the support network appears to promote the intimate partner’s resilience process throughout the patient’s care period.

Abstract Background Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient’s burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patients are at ease and comfortable at the end of their lives. Although there is consensus among health care professionals and within guidelines that efficacy of palliative sedation needs to be closely monitored, there is no agreement about how, when, and by whom, this monitoring should be performed. The aim of this study is to evaluate the effects of palliative sedation by measuring the discomfort levels and sedation/agitation levels of the patients at regular timepoints. In addition, the clinical trajectories of those patients receiving palliative sedation will be monitored and recorded. Methods The study is an international prospective non-experimental observational multicentre study. Patients are recruited from in-patient palliative care settings in Belgium, Germany, Italy, Spain and the Netherlands. Adult patients with advanced cancer are monitored by using proxy observations of discomfort (DS-DAT) and depth of sedation/agitation levels (RASS-PAL) during palliative sedation. After the palliative sedation period, the care for the specific participant case is evaluated by one of the attending health care professionals and one relative via a questionnaire. Discussion This study will be the first international prospective multicenter study evaluating the clinical practice of palliative sedation including observations of discomfort levels and levels of sedation. It will provide valuable information about the practice of palliative sedation in European countries in terminally ill cancer patients. Results from this study will facilitate the formulation of recommendations for clinical practice on how to improve monitoring and comfort in patients receiving palliative sedation. Trial registration This study is registered at Clinicaltrials.gov since January 22, 2021, registration number: NCT04719702.

Abstract Purpose Despite that early integration of palliative care is recommended in advanced cancer patients, referrals to outpatient specialised palliative care (SPC) frequently occur late. Well-defined referral criteria are still missing. We analysed indicators associated with early (ER) and late referral (LR) to SPC of an high volume outpatient unit of a comprehensive cancer center. Methods Characteristics, laboratory parameters and symptom burden of 281 patients at first SPC referral were analysed. Timing of referral was categorized as early, intermediate and late (> 12, 3–12 and

Abstract Background Patients with advanced cancer are prone to experience burdensome physical, psychological, and financial consequences. Healthcare providers may not fully appreciate advanced cancer patients’ medical care autonomy, such as at that emboded by Advance Care Planning (ACP), and by doing so may compromise their quality of end-of-life (EOL). Hence, it is essential for healthcare providers to effectively assess and communicate with patients’ regarding their medical decisions before their patients are incapacitated by their disease progression. The purpose of this investigation was to describe the decisional balance, attitudes, and practice behaviors of ACP and its predictors of ACP-related experiences in Taiwanese patients with advanced cancer. Methods This cross-sectional, descriptive study employed a mixed-methodsquantitative and qualitative design with a sample of 166 patients that were purposely recruited from in-patient oncology units at a regional teaching hospital in southern Taiwan. Study data consisted of patient replies to a 34-item self-report tool, Decisional Balance, Attitudes, Practice Behaviors of ACP (DAP-ACP) and 4 semi-structured questions. Result Findings indicated that, in general, study participants exhibited favorable ACP-decisional balance and positive ACP-attitudes & practice behaviors. The results also indicated that gender, educational level, and cancer diagnosis were associated with significant differences on the “ACP-decisional balance” and “ACP-attitudes” scales. In addition, our findings documented that the participants’ gender and educational level were significant predictors of both ACP-decisional balance and ACP-attitudes. Furthermore the participants’ ACP-practice behaviors were predicted by ACP-decisional balance, but not with their ACP-attitudes. The qualitative analysis of the semi-structured questions identified six themes in responses to current medical decision making (e.g., compliance with physician instructions, family engagement in treatment decision-making); and eight themes pertaining to future ACP-related concerns were identified (e.g., family conflict, effectiveness of time-limited trials). Conclusion To promote patients’ engagement in ACP, the healthcare professional need to assess and advocate patients’ concerns or attitudes regarding ACP in a timely manner. In addition, factors or concerns that might influence patients’ responses to ACP derived from both the quantitative and qualitative findings of this current study need to be considered especially in initiating the dialogue regarding ACP with patients with advanced cancer. Trial registration No. CYCH 2,019,072, Date of registration 5 Dec 2019.

Abstract Background Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients’ QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. Methods To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents’ viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. Results Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. Conclusions Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

Background: Cancer is the third highest cause of death in Kenya. Eighty percent of cancer cases arrive at advanced stages, when there is nothing that can be done to cure them, and palliative care is the best alternative. Although the majority of end-of-life care in Kenya is provided at home, little is known about the caregivers’ preparedness, resilience and continued unmet needs. The goal of this qualitative study was to explore caregivers’ perceived preparedness, resilience and continued unmet needs in their caregiving role to patients with advanced stages of cancer. Methods: A purposive sampling method was used to identify and recruit twelve informal, home-based caregivers of patients with advanced cancer from Kijabe Palliative Clinic data base. Interviews were conducted in patients' homes. The data was analyzed using interpretive phenomenological analysis approach. Ethical considerations were observed. Participants were kept anonymous and confidentiality. Results: Competing tasks, lack of preparedness in handling end-of-life care for patients in advanced stages of cancer were the main concerns. Continued unmet needs and financial stresses, and vulnerability for female caregivers all contributed to increased caregiver burden in this study. Caregivers were however determined and resilient amidst challenges that faced them, they exhibited hope against hopelessness. Some caregivers were vulnerable and faced potential for abuse following anticipated loss of their family member exacerbated psychosocial stress and needs Conclusion: Informal caregivers had common unmet needs related to caring for their advanced cancer patients. Whilst family caregivers had huge caregiver burden, insurmountable practical challenges related to role overload and competing tasks, they remained resilient though unprepared in giving end of life care. Recommendations: Caregivers should also be examined, prepared, and supported during clinic reviews. More research is needed on the use of telephones for caregiver follow-up, the impact of introducing caregiver-targeted screening tools on caregiver quality of life and their impact on enhancing caregiver well-being in order to prepare & support them adequately for the caregiving role. [ABSTRACT FROM AUTHOR]

Background: The tremendous physical and mental burden that comes with caregiving puts the intimate partners of patients diagnosed with advanced cancer at risk for mental disorders. However, most partners seem to be protected by resilience. Such a resilience process is promoted by certain individual characteristics (e.g., flexibility, positive attitude, internal strength, capacity to balance incoming and outgoing information, and ability to ask for and accept support and advice) and by the availability of a support network, consisting of family, friends, and healthcare professionals. Such a heterogeneous group striving towards the same goals can be considered a complex adaptive system (CAS), a concept stemming from complexity science. Aims: To study the behavior of the support network through the lens of complexity science and to provide insights to the means by which an available network may promote resilience. Methods: Nineteen interviews with members from the support networks of eight intimate partners were analyzed deductively using the CAS principles as a coding framework. Subsequently, the quotes under each principle were coded inductively to concretize patterns in the behavior of the support networks. Eventually, the codes were charted into a matrix to identify intra- and inter-CAS similarities, differences, and patterns. Findings: The network's behavior adapts dynamically to the changing circumstances as the patient's prognosis worsens. Furthermore, the behavior is based on internalized basic rules (such as reassuring availability and maintaining communication without being intrusive), attractors (e.g., feeling meaningful, appreciated, or connected), and the history of the support network. However, the interactions are non-linear and often unpredictable due to the context member's own concerns, needs, or emotions. Conclusions: Applying the lens of complexity science to the behavior of an intimate partner's support network gives us insight into the network's behavioral patterns. Indeed, a support network is a dynamic system that behaves according to the principles of a CAS and adapts resiliently to the changing circumstances as the patient's prognosis worsens. Moreover, the behavior of the support network appears to promote the intimate partner's resilience process throughout the patient's care period. [ABSTRACT FROM AUTHOR]

Background: Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient's burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patients are at ease and comfortable at the end of their lives. Although there is consensus among health care professionals and within guidelines that efficacy of palliative sedation needs to be closely monitored, there is no agreement about how, when, and by whom, this monitoring should be performed. The aim of this study is to evaluate the effects of palliative sedation by measuring the discomfort levels and sedation/agitation levels of the patients at regular timepoints. In addition, the clinical trajectories of those patients receiving palliative sedation will be monitored and recorded. Methods: The study is an international prospective non-experimental observational multicentre study. Patients are recruited from in-patient palliative care settings in Belgium, Germany, Italy, Spain and the Netherlands. Adult patients with advanced cancer are monitored by using proxy observations of discomfort (DS-DAT) and depth of sedation/agitation levels (RASS-PAL) during palliative sedation. After the palliative sedation period, the care for the specific participant case is evaluated by one of the attending health care professionals and one relative via a questionnaire. Discussion: This study will be the first international prospective multicenter study evaluating the clinical practice of palliative sedation including observations of discomfort levels and levels of sedation. It will provide valuable information about the practice of palliative sedation in European countries in terminally ill cancer patients. Results from this study will facilitate the formulation of recommendations for clinical practice on how to improve monitoring and comfort in patients receiving palliative sedation. Trial registration: This study is registered at Clinicaltrials.gov since January 22, 2021, registration number: NCT04719702. [ABSTRACT FROM AUTHOR]

Abstract Background Persons with advanced cancer and their relatives experience physical, emotional, and psychosocial consequences of the illness. Most of the time, they must deal with these themselves. While peer self-management support programs may be helpful, there is little evidence on their value for this population. We present the research protocol of our SMART study that will evaluate the effectiveness of the “Living with Cancer” peer self-management support program, aimed at improving self-management behaviors, self-efficacy, and health-related quality of life of persons with advanced cancer and their relatives. Methods We will conduct a non-randomized stepped wedge study in the Netherlands. We will include 130 persons with advanced cancer and 32 relatives. Participants can choose to either start the program within 4 weeks after inclusion or after eight to 10 weeks. The “Living with Cancer” is a peer self-management support program, based on the Chronic Disease Self-Management Program. It consists of six 1,5 hours video-conferencing group meetings with eight to 12 participants, preceded by two or three preparatory audio clips with supportive text per session. The program has the following core components: the learning of self-management skills (action-planning, problem-solving, effective communication, and decision-making), discussing relevant themes (e.g. dealing with pain and fatigue, living with uncertainty, and future planning), and sharing experiences, knowledge, and best practices. The primary outcome for both persons with advanced cancer and relatives is self-management behavior assessed by the subscale “constructive attitudes and approaches” of the Health Education Impact Questionnaire. Secondary outcomes are other self-management behaviors, self-efficacy, health-related quality of life, symptoms, depression and anxiety, and loneliness. Participants complete an online questionnaire at baseline, and after eight and 16 weeks. After each session, they complete a logbook about their experiences. Group meetings will be video recorded. Discussion SMART aims to evaluate an innovative program building on an evidence-based self-management program. New features are its use for persons with advanced cancer, the inclusion of relatives, and the video-conferencing format for this population. The use of both quantitative and qualitative analyses will provide valuable insight into the effectiveness and value of this program. Trial registration This study was registered in the Dutch Trial Register on October 2021, identifier NL9806 .

Abstract Background Approximately 60% of outpatients with advanced cancer experience pain; therefore, self-management of opioid use is important for appropriate pain relief. To date, no studies have clearly described the concept of opioid self-management or assessed the factors involved, including the improvement of self-management abilities. This study developed, and evaluated the validity and reliability of an opioid self-management scale for advanced cancer patients with pain (OSSA). Opioid self-management in advanced cancer patients with pain was defined as the management of opioid medication performed by patients with advanced cancer to relieve cancer pain on their own. Methods Three phases were required for validation and reliability of the OSSA: 1) testing content validity, 2) testing face validity, and 3) testing construct validity, concurrent validity and reliability. Results After a three-phase process, the OSSA consisted of 33 items on six subscales. The structural equation modeling was such that the χ2 value was 709.8 (p

Abstract Background Advanced cancer patients often experience multiple symptoms at a same time. This might lead to polypharmacy and increase adverse events representing major threats to the quality of health care, especially in palliative care situations. Mirtazapine, an antidepressant agent, has been suggested as a potential relevant drug to alleviate multiple cancer-related symptoms at a same time. Therefore, the present study aims to assess the effectiveness of mirtazapine in alleviating multiple symptoms at a same time in advanced cancer patients suffering from a major depressive episode compared to a group receiving escitalopram, another antidepressant agent. Methods Multicentre, prospective, randomized, controlled trial in 12 palliative care services in France. The study will be based on a mixed-method methodology using parallel groups, of oral mirtazapine compared with oral escitalopram, with a 56 day follow-up. The primary outcome will be an improvement of the Global health Status (issued from the EORTC-QLQ-C30) on day 56. 418 participants will be clinically followed-up on day 7 and 56 and will have a telephonic assessment on days 14 and 28. A sub-sample of participants will be invited to take part in semi-structured qualitative interviews at baseline and day 56. For the qualitative part, purposeful sampling will be used. Discussion This study will provide evidence for the pharmaceutics management of poly-symptomatology in advanced cancer patients. This could lead to important changes in the management of those patients by using a single molecule to alleviate multiple symptoms at a same time, potentially improving medication adherence, symptoms’ control, and reducing the risk of medications adverse events. Trial registration Trial registration: NCT04763135 . Registered 18 March 2021.

Abstract Background An innovative patient-centred interprofessional communication concept with advanced lung cancer patients (Heidelberg Milestone Communication Approach, MCA) has been developed and implemented. Role changes and interprofessional communication are challenging in a busy outpatient oncology service. The aim of the study was to present attitudes to interprofessional collaboration of professions in thoracic oncology during the implementation of MCA and to explore factors and experiences healthcare team members associate with its implementation. Methods In a longitudinal study, 3 of the 4 subscales of the validated German translation of the University of the West of England Interprofessional Questionnaire (UWE-IP-D) were collected prior to implementation of MCA (t0) with follow-up data collections at 4 months (t1), 10 months (t2) and 17 months (t3). Descriptive analysis included calculating subscale sum scores and categorizing each subscale into positive, neutral and negative attitudes. Interviews and focus groups on implementation and interprofessional collaboration in the context of MCA were conducted with healthcare staff. The topics were analysed deductively, guided by the Professional Interactions factor of the Tailored Implementation for Chronic Diseases (TICD) framework. Results The survey with 87 staff (44 nurses, 13 physicians, 12 psycho-social staff, 7 therapists, and 11 others) participating at least once found heterogeneous attitudes. ‘Communication and Teamwork’ and ‘Interprofessional Relationships’ were characterized by primarily positive attitudes. Neutral attitudes to ‘Interprofessional Interaction’ were indicated by the majority of respondents. There were no differences between collection times. Fifteen staff members participated in the interviews and focus groups. The main interprofessional interaction factors associated with implementation concerned the knowledge of the MCA and the impact of the intervention on team roles, on information sharing and on transfer processes between wards. Adaptive processes led to a shift in the perception of responsibilities and interprofessional collaboration. Conclusions Positive experiences and potential shortfalls in the implementation were observed. Future introductions of interprofessional communication concepts require further activities which should address the attitudes of healthcare professionals towards interprofessional care. Trial registration DRKS00013469 / Date of registration: 22/12/2017.

Abstract Background Although several studies assessing the needs of advanced cancer patients have been conducted globally, most have focused on a specific type of cancer such as lung or breast cancer. The variation across studies has also created difficulties in generalizing the results and applying the findings in other countries. The aim of this study was to provide comprehensive information on the needs of Palestinian advanced cancer patients. The quality of life (QOL), distress levels, depression, anxiety, and spiritual well-being of the patients were also assessed. Methods A hospital-based study with a cross-sectional design was conducted on a convenience sample of patients aged 18 or above who had been diagnosed with advanced-stage cancer. The unmet needs of the patients were assessed using the Short form of the Supportive Care Needs Survey (SCNS-SF34). Four instruments were utilized to examine their distress, anxiety, depression, QOL, and spirituality. A modified Supportive Care Framework was adopted to guide the design of this study. Descriptive statistics and hierarchical linear regression were utilized to analyse the data. Results Of the 404 cancer patients invited to the study, 379 patients consented to participate and complete the questionnaire. Of them 96.8% stated that they had at least one ‘moderate to high’ level unmet need. The most frequent unmet needs were those in the physical aspects of daily living (Mean 58.94; SD ± 20.93) and psychological (Mean 58.84; SD ± 19.49) domains. Most of the patients (91%) were physically ill and reported experiencing physical symptoms. About 78.1% had a high level of distress. Almost 90% reported signs of depression and anxiety. Although they felt that their spiritual well-being was good, their QOL was poor. Hierarchical linear regression analyses confirmed that educational level, age, gender, marital status, cancer stage, cancer type, physical symptoms, depression, anxiety, distress, QOL, and spirituality were independently associated with unmet supportive care needs. Conclusion Palestinian advanced cancer patients exhibit a significantly higher prevalence of unmet needs than those in other countries, indicating a need to develop a palliative care programme within the healthcare system. They have a great need for physical, emotional/psychosocial, self-management and other services, which should be made available to them, particularly in the routine delivery of cancer care.

Abstract Background Many patients with a solid metastatic cancer are treated aggressively during their last month of life. Using data from a large prospective cohort study of patients with an advanced cancer, we aimed to assess the number and predictors of aggressive interventions during last month of life among patients with solid metastatic cancer and its association with bereaved caregivers’ outcomes. Methods We used data of 345 deceased patients from a prospective cohort study of 600 patients. We surveyed patients every 3 months until death for their physical, psychological and functional health, end-of-life care preference and palliative care use. We surveyed their bereaved caregivers 8 weeks after patients’ death regarding their preparedness about patient’s death, regret about patient’s end-of-life care and mood over the last week. Patient data was merged with medical records to assess aggressive interventions received including hospital death and use of anti-cancer treatment, more than 14 days in hospital, more than one hospital admission, more than one emergency room visit and at least one intensive care unit admission, all within the last month of life. Results 69% of patients received at least one aggressive intervention during last month of life. Patients hospitalized during the last 2–12 months of life, male patients, Buddhist or Taoist, and with breast or respiratory cancer received more aggressive interventions in last month of life. Patients with worse functional health prior to their last month of life received fewer aggressive interventions in last month of life. Bereaved caregivers of patients receiving more aggressive interventions reported feeling less prepared for patients’ death. Conclusion Findings suggest that intervening early in the sub-group of patients with history of hospitalization prior to their last month may reduce number of aggressive interventions during last month of life and ultimately positively influence caregivers’ preparedness for death during the bereavement phase. Trial registration NCT02850640 .

Abstract Cachexia is a prevalent muscle wasting syndrome among people with advanced cancer that profoundly impacts patient quality of life (QoL) and physical function. Exercise can improve QoL, physical function, and overall health in people with cancer and may be an important addition to treatment approaches for cancer cachexia. Greater understanding of patients’ perception of exercise can help elucidate the feasibility of implementing exercise interventions for cancer cachexia and facilitate the design of patient-centered interventions. We aimed to describe the perception of exercise in patients with advanced cancer and cachexia, and capture exercise motivators, barriers, and preferences, to inform the feasibility of exercise interventions. Individual interviews (n = 20) with patients with locally advanced or metastatic cancer with cachexia were conducted and analyzed using reflexive thematic analysis. Main themes from interviews were: 1) Life is disrupted by cancer and cachexia; 2) Exercise offers hope; 3) Exercise barriers are multifaceted; and 4) Exercise access and support are important. Participants reported that their cancer and cachexia had intensely altered their lives, including ability to exercise. Exercise was perceived as important and participants described a hope for exercise to improve their health and wellbeing. Yet, several complex exercise barriers, such as burdensome cancer symptoms and the overwhelming impact of the COVID-19 pandemic, hindered exercise participation and prevented participants from fully realizing the perceived benefits of exercise. Factors believed to improve exercise engagement and overcome exercise barriers included increased exercise support (e.g., professional supervision) and accessibility (e.g., convenient locations). Patient-reported exercise barriers and preferences can inform the design of exercise interventions, particularly within future research studies aiming to establish exercise feasibility and efficacy in people with advanced cancer and cachexia.

Purpose: Despite that early integration of palliative care is recommended in advanced cancer patients, referrals to outpatient specialised palliative care (SPC) frequently occur late. Well-defined referral criteria are still missing. We analysed indicators associated with early (ER) and late referral (LR) to SPC of an high volume outpatient unit of a comprehensive cancer center. Methods: Characteristics, laboratory parameters and symptom burden of 281 patients at first SPC referral were analysed. Timing of referral was categorized as early, intermediate and late (> 12, 3–12 and < 3 months before death). Ordinal logistic regression analysis was used to identify factors related to referral timing. Kruskal–Wallis test was used to determine symptom severity and laboratory parameter in each referral category. Results: LRs (50.7%) had worse scores of weakness, loss of appetite, drowsiness, assistance of daily living (all p < 0.001) and organisation of care (p < 0.01) in contrast to ERs. The mean symptom sum score was significantly higher in LRs than ERs (13.03 vs. 16.08; p < 0.01). Parameters indicative of poor prognosis, such as elevated LDH, CRP and neutrophil-to-lymphocyte ratio (NLR) (p < 0.01) as well as the presence of ascites (p < 0.05), were significantly higher (all p < 0.001) in LRs. In univariable analyses, psychological distress (p < 0.05) and female gender (p < 0.05) were independently associated with an ER. Conclusion: A symptom sum score and parameters of poor prognosis like NLR or LDH might be useful to integrate into palliative care screening tools. [ABSTRACT FROM AUTHOR]

Background: Persons with advanced cancer and their relatives experience physical, emotional, and psychosocial consequences of the illness. Most of the time, they must deal with these themselves. While peer self-management support programs may be helpful, there is little evidence on their value for this population. We present the research protocol of our SMART study that will evaluate the effectiveness of the “Living with Cancer” peer self-management support program, aimed at improving self-management behaviors, self-efficacy, and health-related quality of life of persons with advanced cancer and their relatives. Methods: We will conduct a non-randomized stepped wedge study in the Netherlands. We will include 130 persons with advanced cancer and 32 relatives. Participants can choose to either start the program within 4 weeks after inclusion or after eight to 10 weeks. The “Living with Cancer” is a peer self-management support program, based on the Chronic Disease Self-Management Program. It consists of six 1,5 hours video-conferencing group meetings with eight to 12 participants, preceded by two or three preparatory audio clips with supportive text per session. The program has the following core components: the learning of self-management skills (action-planning, problem-solving, effective communication, and decision-making), discussing relevant themes (e.g. dealing with pain and fatigue, living with uncertainty, and future planning), and sharing experiences, knowledge, and best practices. The primary outcome for both persons with advanced cancer and relatives is self-management behavior assessed by the subscale “constructive attitudes and approaches” of the Health Education Impact Questionnaire. Secondary outcomes are other self-management behaviors, self-efficacy, health-related quality of life, symptoms, depression and anxiety, and loneliness. Participants complete an online questionnaire at baseline, and after eight and 16 weeks. After each session, they complete a logbook about their experiences. Group meetings will be video recorded. Discussion: SMART aims to evaluate an innovative program building on an evidence-based self-management program. New features are its use for persons with advanced cancer, the inclusion of relatives, and the video-conferencing format for this population. The use of both quantitative and qualitative analyses will provide valuable insight into the effectiveness and value of this program. Trial registration: This study was registered in the Dutch Trial Register on October 2021, identifier . [ABSTRACT FROM AUTHOR]

Background: Approximately 60% of outpatients with advanced cancer experience pain; therefore, self-management of opioid use is important for appropriate pain relief. To date, no studies have clearly described the concept of opioid self-management or assessed the factors involved, including the improvement of self-management abilities. This study developed, and evaluated the validity and reliability of an opioid self-management scale for advanced cancer patients with pain (OSSA). Opioid self-management in advanced cancer patients with pain was defined as the management of opioid medication performed by patients with advanced cancer to relieve cancer pain on their own. Methods: Three phases were required for validation and reliability of the OSSA: 1) testing content validity, 2) testing face validity, and 3) testing construct validity, concurrent validity and reliability. Results: After a three-phase process, the OSSA consisted of 33 items on six subscales. The structural equation modeling was such that the χ2 value was 709.8 (p < 0.001, df = 467), goodness-of-fit index was 0.78, adjusted goodness-of-fit index was 0.73, root mean squares of approximation was 0.063, and comparative fit index was 0.92. The Pearson correlation coefficients between the total OSSA score and the 24-hour average pain or pain relief over 24 hours were − 0.21 (p < 0.05) and 0.26 (p < 0.01), respectively. Cronbach’s α was 0.93. The intraclass correlation coefficient range was 0.59–0.90. Conclusion: The findings of this study show that the OSSA has acceptable validity and reliability, and that better self-management leads to greater pain relief. The OSSA can be considered effective for use in research, but shortened version should be prepared for realistic and practical clinical use. [ABSTRACT FROM AUTHOR]

Abstract Background An advanced cancer patient’s life is often disturbed by fear of cancer recurrence, cancer progress, approaching suffering, and fear of dying. Consequently, the role of the medical oncologist is not only to provide best quality anti-cancer treatment, but also to address the impact of disease and treatment on a patient’s life, the lived illness experience. We aimed to gain insights into whether and how medical oncologists working at an outpatient clinic identify and explore lived illness experiences raised by patients with advanced cancer, and how this influences patients’ responses. Methods Conversation Analysis was applied to analyse 16 verbatim transcribed audio-recorded consultations. Results We identified 37 fragments in which patients expressed a lived experience from 11 of the 16 consultations. We found differing responses from different oncologists. Patients continued talking about their lived experiences if the listener produced a continuer such as humming or tried to capture the experience in their own words. In contrast, a response with optimistic talking or the presentation of medical evidence prevented patients from further unfolding the experience. In consultations in which the lived illness experience was most extensively unfolded, medical oncologists and patients could constantly see each other’s facial expressions. Conclusions When a patient with advanced cancer spontaneously introduces a lived illness experience, it helps to identify and explore it when the medical oncologist produces a continuer or tries to capture this experience in their own words. Our findings can be implemented in training sessions, followed by frequent reinforcement in daily care.

Abstract Background Meeting patients’ preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients’ preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care. Methods This retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with

Background: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. Methods: To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. Results: Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. Conclusions: Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies. [ABSTRACT FROM AUTHOR]

Abstract Background There is very limited evidence on the existence of cancer-related perceived stigma and self-blame among patients with advanced cancer in Asia, and how they are associated with psychosocial outcomes. This study aimed to address the gap in the current literature by (1) assessing perceived stigma, behavioural self-blame and characterological self-blame among Vietnamese patients with advanced cancer, and (2) investigating the associations of perceived stigma and self-blame (behavioural and characterological) with depression, emotional well-being and social well-being. Methods This cross-sectional study involved 200 Vietnamese patients with stage IV solid cancer. Depression was measured using the Center for Epidemiologic Studies Depression (CES-D) Scale. Emotional well-being and social well-being were measured with the relevant domains of the Functional Assessment of Cancer Therapy-General (FACT-G) scale. Perceived stigma was assessed using the sense of stigma subscale of Kissane’s Shame and Stigma Scale. Behavioural self-blame and characterological self-blame were measured by the patients’ answers to the questions on whether their cancer was due to patient’s behaviour or character. Multivariable linear regressions were used to investigate the associations while controlling for patient characteristics. Results Approximately three-fourths (79.0%, n = 158) of the participants reported perceived stigma with an average score of 20.5 ± 18.0 (out of 100). More than half of the participants reported behavioural self-blame (56.3%, n = 112) or characterological self-blame (62.3%, n = 124). Higher perceived stigma was associated with lower emotional well-being (ß = -0.0; p = 0.024). Behavioural self-blame was not significantly associated with depressive symptoms, emotional well-being or social well-being. Patients who reported characterological self-blame reported greater depressive symptoms (ß = 3.0; p = 0.020) and lower emotional well-being (ß = -1.6; p = 0.038). Conclusion Perceived stigma and self-blame were common amongst Vietnamese advanced cancer patients. Perceived stigma was associated with lower emotional well-being while characterological self-blame were associated with greater depressive symptoms and lower emotional well-being. Interventions should address perceived stigma and self-blame among this population.

Background: An innovative patient-centred interprofessional communication concept with advanced lung cancer patients (Heidelberg Milestone Communication Approach, MCA) has been developed and implemented. Role changes and interprofessional communication are challenging in a busy outpatient oncology service. The aim of the study was to present attitudes to interprofessional collaboration of professions in thoracic oncology during the implementation of MCA and to explore factors and experiences healthcare team members associate with its implementation. Methods: In a longitudinal study, 3 of the 4 subscales of the validated German translation of the University of the West of England Interprofessional Questionnaire (UWE-IP-D) were collected prior to implementation of MCA (t0) with follow-up data collections at 4 months (t1), 10 months (t2) and 17 months (t3). Descriptive analysis included calculating subscale sum scores and categorizing each subscale into positive, neutral and negative attitudes. Interviews and focus groups on implementation and interprofessional collaboration in the context of MCA were conducted with healthcare staff. The topics were analysed deductively, guided by the Professional Interactions factor of the Tailored Implementation for Chronic Diseases (TICD) framework. Results: The survey with 87 staff (44 nurses, 13 physicians, 12 psycho-social staff, 7 therapists, and 11 others) participating at least once found heterogeneous attitudes. 'Communication and Teamwork' and 'Interprofessional Relationships' were characterized by primarily positive attitudes. Neutral attitudes to 'Interprofessional Interaction' were indicated by the majority of respondents. There were no differences between collection times. Fifteen staff members participated in the interviews and focus groups. The main interprofessional interaction factors associated with implementation concerned the knowledge of the MCA and the impact of the intervention on team roles, on information sharing and on transfer processes between wards. Adaptive processes led to a shift in the perception of responsibilities and interprofessional collaboration. Conclusions: Positive experiences and potential shortfalls in the implementation were observed. Future introductions of interprofessional communication concepts require further activities which should address the attitudes of healthcare professionals towards interprofessional care. Trial registration: DRKS00013469 / Date of registration: 22/12/2017. [ABSTRACT FROM AUTHOR]

Background: Advanced cancer patients often experience multiple symptoms at a same time. This might lead to polypharmacy and increase adverse events representing major threats to the quality of health care, especially in palliative care situations. Mirtazapine, an antidepressant agent, has been suggested as a potential relevant drug to alleviate multiple cancer-related symptoms at a same time. Therefore, the present study aims to assess the effectiveness of mirtazapine in alleviating multiple symptoms at a same time in advanced cancer patients suffering from a major depressive episode compared to a group receiving escitalopram, another antidepressant agent. Methods: Multicentre, prospective, randomized, controlled trial in 12 palliative care services in France. The study will be based on a mixed-method methodology using parallel groups, of oral mirtazapine compared with oral escitalopram, with a 56 day follow-up. The primary outcome will be an improvement of the Global health Status (issued from the EORTC-QLQ-C30) on day 56. 418 participants will be clinically followed-up on day 7 and 56 and will have a telephonic assessment on days 14 and 28. A sub-sample of participants will be invited to take part in semi-structured qualitative interviews at baseline and day 56. For the qualitative part, purposeful sampling will be used. Discussion: This study will provide evidence for the pharmaceutics management of poly-symptomatology in advanced cancer patients. This could lead to important changes in the management of those patients by using a single molecule to alleviate multiple symptoms at a same time, potentially improving medication adherence, symptoms' control, and reducing the risk of medications adverse events. Trial registration: Trial registration: NCT04763135. Registered 18 March 2021. [ABSTRACT FROM AUTHOR]

Background: Many patients with a solid metastatic cancer are treated aggressively during their last month of life. Using data from a large prospective cohort study of patients with an advanced cancer, we aimed to assess the number and predictors of aggressive interventions during last month of life among patients with solid metastatic cancer and its association with bereaved caregivers' outcomes. Methods: We used data of 345 deceased patients from a prospective cohort study of 600 patients. We surveyed patients every 3 months until death for their physical, psychological and functional health, end-of-life care preference and palliative care use. We surveyed their bereaved caregivers 8 weeks after patients' death regarding their preparedness about patient's death, regret about patient's end-of-life care and mood over the last week. Patient data was merged with medical records to assess aggressive interventions received including hospital death and use of anti-cancer treatment, more than 14 days in hospital, more than one hospital admission, more than one emergency room visit and at least one intensive care unit admission, all within the last month of life. Results: 69% of patients received at least one aggressive intervention during last month of life. Patients hospitalized during the last 2–12 months of life, male patients, Buddhist or Taoist, and with breast or respiratory cancer received more aggressive interventions in last month of life. Patients with worse functional health prior to their last month of life received fewer aggressive interventions in last month of life. Bereaved caregivers of patients receiving more aggressive interventions reported feeling less prepared for patients' death. Conclusion: Findings suggest that intervening early in the sub-group of patients with history of hospitalization prior to their last month may reduce number of aggressive interventions during last month of life and ultimately positively influence caregivers' preparedness for death during the bereavement phase. Trial registration: NCT02850640. [ABSTRACT FROM AUTHOR]

Background: Although several studies assessing the needs of advanced cancer patients have been conducted globally, most have focused on a specific type of cancer such as lung or breast cancer. The variation across studies has also created difficulties in generalizing the results and applying the findings in other countries. The aim of this study was to provide comprehensive information on the needs of Palestinian advanced cancer patients. The quality of life (QOL), distress levels, depression, anxiety, and spiritual well-being of the patients were also assessed. Methods: A hospital-based study with a cross-sectional design was conducted on a convenience sample of patients aged 18 or above who had been diagnosed with advanced-stage cancer. The unmet needs of the patients were assessed using the Short form of the Supportive Care Needs Survey (SCNS-SF34). Four instruments were utilized to examine their distress, anxiety, depression, QOL, and spirituality. A modified Supportive Care Framework was adopted to guide the design of this study. Descriptive statistics and hierarchical linear regression were utilized to analyse the data. Results: Of the 404 cancer patients invited to the study, 379 patients consented to participate and complete the questionnaire. Of them 96.8% stated that they had at least one 'moderate to high' level unmet need. The most frequent unmet needs were those in the physical aspects of daily living (Mean 58.94; SD ± 20.93) and psychological (Mean 58.84; SD ± 19.49) domains. Most of the patients (91%) were physically ill and reported experiencing physical symptoms. About 78.1% had a high level of distress. Almost 90% reported signs of depression and anxiety. Although they felt that their spiritual well-being was good, their QOL was poor. Hierarchical linear regression analyses confirmed that educational level, age, gender, marital status, cancer stage, cancer type, physical symptoms, depression, anxiety, distress, QOL, and spirituality were independently associated with unmet supportive care needs. Conclusion: Palestinian advanced cancer patients exhibit a significantly higher prevalence of unmet needs than those in other countries, indicating a need to develop a palliative care programme within the healthcare system. They have a great need for physical, emotional/psychosocial, self-management and other services, which should be made available to them, particularly in the routine delivery of cancer care. [ABSTRACT FROM AUTHOR]

Abstract Background Patients with cancer commonly experience pain and suffering at the end of life days. Community-based palliative care can improve the quality of life of terminally-ill cancer patients and provide them with a merciful death. The purpose of this study was to develop an integrated model of community-based palliative care into PHC for terminally ill cancer patients. Method This study is a health system research (HSR) that was conducted in three phases from October 2016 to July 2020. In the first phase, dimensions of community-based palliative care were explored in patients with cancer using qualitative methods and conventional content analysis. In the second phase, a scoping review was carried out to complete the collected data from the qualitative phase of the study. Based on the collected data in the first and second phases of the study, a preliminary draft of community-based palliative care was developed for patients with cancer based on the framework of the World Health Organization. Finally, the developed model was validated using the Delphi technique in the third phase of the study. Results Data analysis indicated that providing community-based care to patients with cancer is influenced by the context of care. According to the developed model, patients are identified as terminally ill, and then are referred to the local comprehensive health center in a reverse manner. After patients’ referral, they can receive appropriate healthcare until death by the home care team in relation to the comprehensive health center based on the framework of primary healthcare. Conclusions This model was developed based on the current Iranian healthcare structure and the needs of terminally ill cancer patients. According to the model, healthcare is provided in a reverse manner from the subspecialty centers to patients’ homes in order to provide easy access to palliative care. It is suggested to use this model as a pilot at the regional level.

Abstract Background Team-based and timely integrated palliative care is a gold standard of care in oncology, but issues concerning its optimal organization remain. Palliative Care in Day-Hospital (PCDH) could be one of the most efficient service model of palliative care to deliver interdisciplinary and multidimensional care addressing the complex supportive care needs of patients with advanced cancer. We hypothesize that, compared to conventional outpatient palliative care, PCDH allows the clinical benefits of palliative care to be enhanced. Methods/design This study is a multicentre parallel group trial with stratified randomization. Patient management in PCDH will be compared to conventional outpatient palliative care. The inclusion criteria are advanced cancer patients referred to a palliative care team with an estimated life expectancy of more than 2 months and less than 1 year. The primary endpoint is health-related quality of life with deterioration-free survival based on the EORTC QLQ-C30 questionnaire. The secondary objectives are the following: increase in patient satisfaction with care using the EORTC PATSAT-C33 and OUT-PATSAT7 questionnaires, better understanding of the prognosis using the PTPQ questionnaire and advance care planning; decrease in the need for supportive care among relatives using the SCNS-P&C-F questionnaire, and reduction in end-of-life care aggressiveness. Patients will complete one to five questionnaires on a tablet before each monthly visit over 6 months and will be followed for 1 year. A qualitative study will take place, aiming to understand the specificity of palliative care management in PCDH. Cost-effectiveness, cost-utility and, an additional economic evaluation based on capability approach will be conducted from a societal point of view. Discussion The first strength of this study is that it combines the main relevant outcomes assessing integrated palliative care; patient quality of life and satisfaction; discussion of the prognosis and advance care planning, family well-being and end-of-life care aggressiveness. The second strength of the study is that it is a mixed-method study associating a qualitative analysis of the specificity of PCDH organization, with a medical-economic study to analyse the cost of care. Trial registration Name of the registry: IDRCB 2019-A03116–51 Trial registration number: NCT04604873 Date of registration: October 27, 2020 URL of trial registry record

Abstract Context Measurement of patient-centred outcomes enables clinicians to focus on patient and family priorities and enables quality of palliative care to be assessed. Objectives This study aimed to evaluate the validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) among advanced cancer patients in Singapore. Methods IPOS was forward and backward translated from English into Chinese. Structural validity was assessed by confirmatory factor analysis; known-group validity by comparing inpatients and community patients; construct validity by correlating IPOS with Edmonton Symptom Assessment System-revised (ESAS-r) and Functional Assessment of Cancer Therapy–General (FACT-G); internal consistency by Cronbach’s alpha; inter-rater reliability between patient and staff responses; test-retest reliability of patient responses between two timepoints. Results One hundred eleven English-responding and 109 Chinese-responding patients participated. The three-factor structure (Physical Symptoms, Emotional Symptoms and Communication and Practical Issues) was confirmed with Comparative Fit Index and Tucker-Lewis-Index > 0.9 and Root Mean Square Error of Approximation

Abstract Background For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers’ feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann’s qualitative method for analysis. Results Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: “Personal factors”, “Healthcare professionals” and “Organization” of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

Background: An advanced cancer patient's life is often disturbed by fear of cancer recurrence, cancer progress, approaching suffering, and fear of dying. Consequently, the role of the medical oncologist is not only to provide best quality anti-cancer treatment, but also to address the impact of disease and treatment on a patient's life, the lived illness experience. We aimed to gain insights into whether and how medical oncologists working at an outpatient clinic identify and explore lived illness experiences raised by patients with advanced cancer, and how this influences patients' responses. Methods: Conversation Analysis was applied to analyse 16 verbatim transcribed audio-recorded consultations. Results: We identified 37 fragments in which patients expressed a lived experience from 11 of the 16 consultations. We found differing responses from different oncologists. Patients continued talking about their lived experiences if the listener produced a continuer such as humming or tried to capture the experience in their own words. In contrast, a response with optimistic talking or the presentation of medical evidence prevented patients from further unfolding the experience. In consultations in which the lived illness experience was most extensively unfolded, medical oncologists and patients could constantly see each other's facial expressions. Conclusions: When a patient with advanced cancer spontaneously introduces a lived illness experience, it helps to identify and explore it when the medical oncologist produces a continuer or tries to capture this experience in their own words. Our findings can be implemented in training sessions, followed by frequent reinforcement in daily care. [ABSTRACT FROM AUTHOR]

Abstract Background Delirium is highly problematic in palliative care (PC). Preliminary data indicate a potential role for melatonin to prevent delirium, but no randomized controlled trials (RCTs) are reported in PC. Methods Patients aged ≥18 years, with advanced cancer, admitted to an inpatient Palliative Care Unit (PCU), having a Palliative Performance Scale rating ≥ 30%, and for whom consent was obtained, were included in the study. Patients with delirium on admission were excluded. The main study objectives were to assess the feasibility issues of conducting a double-blind RCT of exogenous melatonin to prevent delirium in PC: recruitment, retention, procedural acceptability, appropriateness of outcome measures, and preliminary efficacy and safety data. Study participants were randomized in a double-blind, parallel designed study to receive daily melatonin 3 mg or placebo orally at 21:00 over 28 days or less if incident delirium, death, discharge or withdrawal occurred earlier. Delirium was diagnosed using the Confusion Assessment Method. Efficacy endpoints in the melatonin and placebo groups were compared using time-to-event analysis: days from study entry to onset of incident delirium. Results Over 16 months, 60/616 (9.7%; 95% CI: 7.5–12.4%) screened subjects were enrolled. The respective melatonin (n = 30) vs placebo (n = 30) outcomes were: incident delirium in 11/30 (36.7%; 95%CI: 19.9–56.1%) vs 10/30 (33%; 95% CI: 17.3–52.8%); early discharge (6 vs 5); withdrawal (6 vs 3); death (0 vs 1); and 7 (23%) vs 11 (37%) reached the 28-day end point. The 25th percentile time-to-event were 9 and 18 days (log rank, χ2 = 0.62, p = 0.43) in melatonin and placebo groups, respectively. No serious trial medication-related adverse effects occurred and the core study procedures were acceptable. Compared to those who remained delirium-free during their study participation, those who developed delirium (n = 21) had poorer functional (p = 0.036) and cognitive performance (p = 0.013), and in particular, poorer attentional capacity (p = 0.003) at study entry. Conclusions A larger double-blind RCT is feasible, but both subject accrual and withdrawal rates signal a need for multisite collaboration. The apparent trend for shorter time to incident delirium in the melatonin group bodes for careful monitoring in a larger trial. Trial registration Registered on July 21st 2014 with ClinicalTrials.gov : NCT02200172 .

Abstract Background The predictive value of the prognostic tool for patients with advanced cancer is uncertain in mainland China, especially in the home-based palliative care (HPC) setting. This study aimed to compare the accuracy of the Palliative Prognostic Index (PPI), the Performance Status–Based Palliative Prognostic Index (PS-PPI), and the Chinese Prognosis Scale (ChPS) for patients with advanced cancer in the HPC setting in mainland China. Methods Patients with advanced cancer admitted to the hospice center of Yuebei People’s Hospital between January 2014 and December 2018 were retrospectively calculated the scores according to the three prognostic tools. The Kaplan-Meier method was used to compare survival times among different risk groups. Receiver operating characteristic curve analysis was used to assess the predictive value. The accuracy of 21-, 42- and 90-day survival was compared among the three prognostic tools. Results A total of 1863 patients were included. Survival time among the risk groups of all prognostic tools was significantly different from each other except for the PPI. The AUROC of the ChPS was significantly higher than that of the PPI and PS-PPI for 7-, 14, 21-, 42-, 90-, 120-, 150- and 180-day survival (P 0.05). Conclusions The ChPS is more suitable than the PPI and PS-PPI for advanced cancer patients in the HPC setting. More researches are needed to verify the predictive value of the ChPS, PPI, and PS-PPI in the HPC setting in the future.