Integrating Palliative Care and Heart Failure: the PalliatHeartSynthesis realist synthesis.

Background: Cardiovascular disease is the most common cause of death worldwide, highlighting the need for studies to determine options for palliative care within the management of patients with heart failure. Although there are promising examples of integrated palliative care and heart failure interventions, there is heterogeneity in terms of countries, healthcare settings, multidisciplinary team delivery, modes of delivery and intervention components. Hence, this review is vital to identify what works, for whom and in what circumstances when integrating palliative care and heart failure. Objectives: To (1) develop a programme theory of why, for whom and in what contexts desired outcomes occur; and (2) use the programme theory to co-produce with stakeholders key implications to inform best practice and future research. Design: A realist review of the literature underpinned by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards quality and reporting standards. Data sources: Searches of bibliographic databases were conducted in November 2021 using the following databases: EMBASE, MEDLINE, PsycInfo, AMED, HMIC and CINAHL. Further relevant documents were identified via alerts and the stakeholder group. Review methods: Realist review is a theory-orientated and explanatory approach to the synthesis of evidence. A realist synthesis was used to synthesise the evidence as successful implementation of integrated palliative care and heart failure depends on the context and people involved. The realist synthesis followed Pawson's five iterative stages: (1) locating existing theories; (2) searching for evidence; (3) document selection; (4) extracting and organising data; and (5) synthesising the evidence and drawing conclusions. We recruited an international stakeholder group (n = 32), including National Health Service management, healthcare professionals involved in the delivery of palliative care and heart failure, policy and community groups, plus members of the public and patients, to advise and give us feedback throughout the project, along with Health Education England to disseminate findings. Results: In total, 1768 documents were identified, of which 1076 met the inclusion criteria. This was narrowed down to 130 included documents based on the programme theory and discussions with stakeholders. Our realist analysis developed and refined 6 overarching context-mechanism-outcome configurations and 30 sub context-mechanism-outcome configurations. The realist synthesis of the literature and stakeholder feedback helped uncover key intervention strategies most likely to support integration of palliative care into heart failure management. These included protected time for evidence-based palliative care education and choice of educational setting (e.g. online, face to face or hybrid), and the importance of increased awareness of the benefits of palliative care as key intervention strategies, the emotive and intellectual need for integrating palliative care and heart failure via credible champions, seeing direct patient benefit, and prioritising palliative care and heart failure guidelines in practice. The implications of our findings are further outlined in the capability, opportunity, motivation, behaviour model. Limitations: The realist approach to analysis means that findings are based on our interpretation of the data. Future work: Future work should use the implications to initiate and optimise palliative care in heart failure management. Conclusion: Ongoing refinement of the programme theory at each stakeholder meeting allowed us to co-produce implications. These implications outline the required steps to ensure the core components and determinants of behaviour are in place so that all key players have the capacity, opportunity and motivation to integrate palliative care into heart failure management. Study registration: This study is registered as PROSPERO CRD42021240185. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR131800) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 34. See the NIHR Funding and Awards website for further award information.

People with heart failure can frequently become unwell with poor quality of life despite advanced medical therapies. Palliative care can do much to alleviate suffering for people with heart failure as it focuses on adding to patient care by treating the whole person ­ their physical, psychosocial and spiritual needs, which improves quality of life for both the patient and their loved ones. However, poor integration of palliative care into the management of heart failure is an ongoing problem. To understand why this is, we have undertaken a particular method of literature review called realist synthesis that looks at all types of literature to identify what works, for whom and in what circumstances. We have worked closely with our stakeholder group (including healthcare providers and patients who have heart failure and their carers) to advise and give us feedback throughout this review. We found the following: A review of education for health and social care professionals is needed to make sure that palliative care for patients with non-cancer conditions such as heart failure is adequately covered. Education is also needed for patients and those who care for them to help them understand what palliative care is (holistic care delivered alongside active heart failure management based on patient need) and what it is not (only for cancer patients and end-of-life care). All health and social care staff should work closely together when managing patients with heart failure to learn from each other. Policy, practice and service user champions must be identified and supported to share the benefits of integrated care. Visible guidelines should prioritise integrated palliative care and heart failure so they become part of everyday practice.

The lived experience of renal cachexia: An interpretive phenomenological analysis.

Background: Chronic kidney disease is common, affecting up to 13 % of the global population, and is predicted to become the fifth leading cause of 'life years lost' by 2040. Individuals with end-stage kidney disease commonly develop complications such as protein-energy wasting and cachexia which further worsens their prognosis. The syndrome of 'renal cachexia' is poorly understood, under-diagnosed and even if recognised has limited treatment options. Objective: To explore the lived experience of renal cachexia for individuals with end-stage kidney disease and the interrelated experiences of their carers. Design: This interpretive phenomenological study was designed to facilitate an in-depth exploration of how patients and carers experience of renal cachexia. To improve and document the quality, transparency, and consistency of patient and public involvement in this study the Guidance for Reporting Involvement of Patients and the Public-Short Format was followed. Setting: The study was conducted across two nephrology directorates, within two healthcare trusts in the United Kingdom. Participants: Seven participants who met the inclusion criteria were recruited for this study, four patients (three female, one male) and three carers (two male, one female). Methods: We employed a purposive sampling strategy. Data collection was conducted between July 2022 and December 2023. Interviews were semi-structured, audio-recorded, transcribed verbatim and analysed in six steps by two researchers using interpretive phenomenological analysis. Ethical approval was approved by the Office for Research Ethics Committees Northern Ireland (Reference: 22/NI/0107). Results: Analysis generated six group experiential themes: the lived experience of appetite loss, functional decline and temporal coping, weight loss a visual metaphor of concern, social withdrawal and vulnerability, the emotional toll of eating challenges and psychological strain amidst a lack of information about cachexia. Conclusion: This is the first qualitative study exploring the lived experience of renal cachexia for patients and carers. Our study highlights that psycho-social and educational support is urgently needed. Additionally, healthcare professionals need better information provision to help them to recognise and respond to the needs of this population. Further research is required to develop models of holistic support which could help patients and carers cope with the impact of renal cachexia and optimally manage this syndrome within the family unit. Registration: N/A.

Developing research priorities for palliative care in Colombia: a priority setting partnership approach.

BACKGROUND: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.

Exercise and nutrition interventions for renal cachexia.

PURPOSE OF REVIEW: Renal cachexia is a deleterious condition characterized by weight loss, muscle wasting and loss of physical function, quality of life, and increased mortality. Multimodal treatment strategies utilizing exercise and nutrition interventions have been recently suggested although the evidence base is still in its infancy. This paper aimed to review the current literature surrounding the use of exercise and nutrition for renal cachexia. MAIN FINDINGS: Evidence from systematic reviews and narrative reviews indicates that resistance training (RT) is proven to have beneficial effects on improving muscle strength and in some cases physical function, although effects on muscle mass are mixed and inconclusive. Further, combined RT and aerobic training (AT) may have also beneficial effects on overall functional capacity and there appears to be no superior mode of protocol (inter/intra-dialysis vs. home-based). For nutrition, there is new data from systematic review of studies indicating that oral nutritional supplementation (ONS) may have beneficial effects on nutritional status (e.g. body mass index, plasma albumin and handgrip strength). Omega-3 fatty acids have been shown to have anti-inflammatory effects in haemodialysis patients from two recent systematic reviews, and evidence from other populations groups indicate they may be beneficial for improving muscle mass and strength. SUMMARY: Evidence is accumulating for individual exercise and nutrition components but specific multimodal treatment studies in renal cachexia need to be urgently undertaken.

Integrated palliative care in oncology: a protocol for a realist synthesis.

INTRODUCTION: Emerging evidence suggests improved quality of life, reduced symptom burden and lower health services costs when integrated palliative care and cancer care are implemented. Integrated palliative care aims to achieve care continuity by integrating organisational, administrative and clinical services involved in patient care networks. However, integrated palliative care for cancer is not common practice. This project, therefore, aims to understand how integrated palliative care and cancer care works in different healthcare settings (inpatient/outpatient), and for which groups of people (at what stage of the cancer journey), so we can develop guidance for optimal delivery. METHODS AND ANALYSIS: We will conduct a realist synthesis to develop a programme theory of how integrated palliative care in cancer works, for whom and in what contexts to achieve improved symptom management and quality of life for patients and their families.This realist synthesis will follow the five stages outlined by Pawson: (1) locating existing theories, (2) searching for evidence, (3) article selection, (4) extracting and organising data and (5) synthesising the evidence and drawing conclusions. We will work closely with our expert stakeholder group, which includes health and social care professionals providing palliative care and oncology; management and policy groups and members of the public and patients. We will adhere to RAMESES quality standards for undertaking a realist synthesis. ETHICS AND DISSEMINATION: Ethics approval for this project is not required.The realist synthesis will develop a programme theory that provides clarity on the optimal delivery of palliative care for adults with cancer. We will use the programme theory to coproduce guidance and user-friendly outputs, working with stakeholders to inform delivery of best practice. Findings will inform further research in integrated palliative care and cancer. Stakeholder engagement will assist in the dissemination of our findings. PROSPERO REGISTRATION NUMBER: CRD42023389791.

Integrating palliative care and heart failure: a systematic realist synthesis (PalliatHeartSynthesis).

OBJECTIVES: (1) Develop a programme theory of why, for whom and in what contexts integrated palliative care (PC) and heart failure (HF) services work/do not work; (2) use the programme theory to co-produce with stakeholders, intervention strategies to inform best practice and future research. METHODS: A systematic review of all published articles and grey literature using a realist logic of analysis. The search strategy combined terms significant to the review questions: HF, PC and end of life. Documents were included if they were in English and provided data relevant to integration of PC and HF services. Searches were conducted in November 2021 in EMBASE, MEDLINE, PsycINFO, AMED, HMIC and CINAHL. Further relevant documents were identified via monthly alerts (up until April 2023) and the project stakeholder group (patient/carers, content experts and multidisciplinary practitioners). RESULTS: 130 documents were included (86 research, 22 literature reviews, 22 grey literature). The programme theory identified intervention strategies most likely to support integration of PC and HF services. These included protected time for evidence-based PC and HF education from undergraduate/postgraduate level and continuing professional practice; choice of educational setting (eg, online, face-to-face or hybrid); increased awareness and seeing benefits of PC for HF management; conveying the emotive and intellectual need for integrating PC and HF via credible champions; and prioritising PC and HF guidelines in practice. CONCLUSIONS: The review findings outline the required steps to take to increase the likelihood that all key players have the capacity, opportunity and motivation to integrate PC into HF management. PROSPERO REGISTRATION NUMBER: CRD42021240185.

Co-Designing a Strategy for Implementing the SPARC Holistic Needs Assessment Tool in the Colombian Clinical Context.

In Colombia, timely access to palliative care (PC) is hampered by difficulties in identifying and referring to necessary services. The SPARC (Sheffield Profile for Assessment and Referral for Care) instrument provides a holistic needs assessment to improve referrals for different forms of care. SPARC was recently validated in Colombian Spanish (SPARC-Sp) but has not yet been implemented in clinical practice. We undertook workshops that aimed to co-design an implementation strategy to inform a future trial testing SPARC-Sp in the Colombian healthcare system. Workshop attendees included patients, informal caregivers, healthcare professionals, volunteers, administrative staff and decision makers. Discussions within the workshops refined implementation and dissemination strategies for SPARC-Sp in practical scenarios. Results include the need for education, clarification and demystification of PC and the lack of time and skills of professionals to identify patients' needs. Attendees recognized SPARC-Sp as a valuable tool for highlighting patients' concerns, whose adaptations are needed in Colombia to address the low literacy of the population and specificities of the healthcare system. We proposed local adaptations to SPARC-Sp and produced five educational videos aimed at health professionals, patients and caregivers to strengthen understanding of holistic needs in PC while building a strategy for SPARC-Sp implementation in the Colombian context.

Non-steroidal anti-inflammatory drugs for treatment of cancer cachexia: A systematic review.

Cancer cachexia (CC) is a multifactorial syndrome driven by inflammation, defined by ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support. CC leads to progressive functional impairment, with its clinical management complicated and limited therapeutic options available. The objective of this review was to assess the efficacy and safety of non-steroidal anti-inflammatory drugs (NSAIDs) on patient-centred outcomes in patients with CC. In 2013, two systematic reviews concluded that there was insufficient evidence to recommend NSAIDs for clinical management of CC outside of clinical trials. However, clinical trials of multi-component CC interventions have included NSAIDs as an intervention component, so an up-to-date assessment of the evidence for NSAIDs in the treatment of CC is warranted. Four databases (MEDLINE, EMBASE, CENTRAL and CINAHL) and three trial registers (clinicaltrials.gov, WHO ICTRP and ISRCTN) were searched on 16 December 2022. Randomized controlled trials (RCTs) comparing any NSAID (any dose or duration) with a control arm, in adult patients with CC, reporting measures of body weight, body composition, nutrition impact symptoms, inflammation, physical function or fatigue, were eligible for inclusion. Primary outcomes (determined with patient involvement) were survival, changes in muscle strength, body composition, body weight and quality of life. Included studies were assessed for risk of bias using the Revised Cochrane risk-of-bias tool for randomized trials. Five studies were included, which investigated Indomethacin (n = 1), Ibuprofen (n = 1) and Celecoxib (n = 3). Four studies were judged to be at high risk of bias for all outcomes, with one study raising concerns for most outcomes. Considerable clinical and methodological heterogeneity amongst the studies meant that meta-analysis was not appropriate. There was insufficient evidence to determine whether Indomethacin or Ibuprofen is effective or safe for use in patients with CC; RCTs with lower risk of bias are needed. Celecoxib studies indicated it was safe for use in this population at the doses tested (200-400 mg/day) but found contrasting results regarding efficacy, potentially reflecting heterogeneity amongst the studies. There is inadequate evidence to recommend any NSAID for CC. While current clinical trials for CC treatments are shifting towards multi-component interventions, further research to determine the efficacy and safety of NSAIDs alone is necessary if they are to be included in such multi-component interventions. Furthermore, the lack of data on patient-determined primary outcomes in this review highlights the need for patient involvement in clinical trials for CC.

Implementing Palliative Care Teams Specialized in Dementia in Two Countries: Experiences of Failure and Success.

Much is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models in the Netherlands (2017-2018) and Northern Ireland (2016-2017) contrasting its evaluations. From implementation failure in the Netherlands compared with successful implementation in Northern Ireland, we learn that recognizing roles and competencies among all involved is essential in developing effective partnership relationships. All of this is facilitated by referral before the end of life and offering various training programs and in-patient and out-patient services and therapies to show benefits early.

Developing an Evidence and Theory Based Multimodal Integrative Intervention for the Management of Renal Cachexia: A Theory of Change.

In this study, we aimed to develop a theoretical framework for a multimodal, integrative, exercise, anti-inflammatory and dietary counselling (MMIEAD) intervention for patients with renal cachexia with reference to how this addresses the underlying causal pathways for renal cachexia, the outcomes anticipated, and how these will be evaluated. We used a Theory of Change (ToC) approach to guide six steps. Step 1 included inputs from a workshop to obtain key stakeholder views on the potential development of a multimodal intervention for renal cachexia. Step 2 included the findings of a mixed-methods study with Health Care Practitioners (HCPs) caring for individuals with End Stage Kidney Disease (ESKD) and cachexia. Step 3 included the results from our systematic literature review on multimodal interventions for cachexia management. In step 4, we used the body of our research team's cachexia research and wider relevant research to gather evidence on the specific components of the multimodal intervention with reference to how this addresses the underlying causal pathways for renal cachexia. In steps 5 and 6 we developed and refined the ToC map in consultation with the core research team and key stakeholders which illustrates how the intervention components of MMIEAD interact to achieve the intended long-term outcomes and anticipated impact. The results of this study provide a theoretical framework for the forthcoming MMIEAD intervention for those with renal cachexia and in subsequent phases will be used to determine whether this intervention is effective. To the best of our knowledge no other multimodal intervention trials for cachexia management have reported a ToC. Therefore, this research may provide a useful framework and contribute to the ongoing development of interventions for cachexia management.

Exploring the lived experience of renal cachexia for individuals with end-stage renal disease and the interrelated experience of their carers: Study protocol.

Renal cachexia is an important consideration in the person-centred care that is needed in end-stage renal disease (ESRD). However, given that clinical guidelines relating to renal cachexia are largely absent, this is an unmet care need. To inform guidelines and future renal service planning, there is an urgency to understand individuals' experiences of renal cachexia and the interrelated experiences of the carers in their lives. We report here the protocol for an interpretative phenomenological study which will explore this lived experience. A purposive sampling strategy will recruit individuals living with ESRD who have cachexia and their carers. A maximum of 30 participants (15 per group) dependent on saturation will be recruited across two nephrology directorates, within two healthcare trusts in the United Kingdom. Individuals with renal cachexia undergoing haemodialysis will be recruited via clinical gatekeepers and their carers will subsequently be invited to participate in the study. Participants will be offered the opportunity to have a face-to-face, virtual or telephone interview. Interviews will be audio-recorded, transcribed verbatim and analysed using interpretative phenomenological analysis. NVivo, will be used for data management. Ethical approval for this study was granted by the Office for Research Ethics Committees Northern Ireland (REC Reference: 22/NI/0107). Scientific evidence tends to focus on measurable psychological, social and quality of life outcomes but there is limited research providing in-depth meaning and understanding of the views of individuals with renal disease who are experiencing renal cachexia. This information is urgently needed to better prepare healthcare providers and in turn support individuals with ESRD and their carers. This study will help healthcare providers understand what challenges individuals with ESRD, and their carers face in relation to cachexia and aims to inform future clinical practice guidelines and develop supportive interventions which recognise and respond to the needs of this population.

Exploring the prevalence, impact and experience of cardiac cachexia in patients with advanced heart failure and their caregivers: A sequential phased study.

BACKGROUND: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. AIM: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers. DESIGN: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome. SETTING/PARTICIPANTS: Two healthcare trusts within the United Kingdom. RESULTS: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures (p < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group (p < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'. CONCLUSIONS: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support.

Exercise Interventions for Women with Ovarian Cancer: A Realist Review.

BACKGROUND: Despite evidence indicating the benefits of exercise interventions for women with ovarian cancer both during and following treatment, uptake is poor. There is limited research exploring the implementation of such interventions for this cohort of women. The purpose of this review was to identify implementation theories in relation to exercise interventions for women with stages I-IV ovarian cancer, both during and following treatment; to explain positive and negative contextual factors, which may help or hinder implementation; and to develop a theory on how exercise interventions for women with ovarian cancer may be implemented. METHODS: This realist review sourced literature from five electronic databases: CINAHL plus, Medline, Embase, PsycINFO and Google Scholar. Methodological rigour was assessed using the relevant critical appraisal skills programme tools. RESULTS: Nine papers were included. Two intervention stages were identified: first, optimising uptake by providing education to patients on the benefits of exercise, approaching patients when symptoms are adequately managed and offering a personalised exercise programme; second, adherence and retention are influenced by the provision of an "autoregulated" exercise programme with additional supportive infrastructure, individualised goal setting and symptom management support where required. CONCLUSION: Women with ovarian cancer are reluctant to engage in exercise interventions, despite the supporting evidence in terms of positive clinical outcomes. This realist review elucidates underlying mechanisms and important contextual factors that will support and guide the implementation of exercise interventions for this cohort of women.

Disease-related malnutrition in chronic kidney disease.

PURPOSE OF REVIEW: Disease-related malnutrition has complex and multifactorial pathophysiology. It is common in patients with chronic kidney disease (CKD) and has a devastating impact on morbidity and mortality. Given the rising numbers of patients diagnosed with CKD, disease-related malnutrition is an escalating clinical challenge. This review summarises current knowledge in relation to the development, screening and treatments for disease-related malnutrition in CKD. RECENT FINDINGS: New research has identified other potential causes for the development of malnutrition in CKD, including changes in taste and smell, and effects of polypharmacy. Screening and assessment studies have investigated different tools in relation to the new Global Leadership Initiative on Malnutrition (GLIM) criteria. Different modalities of low protein diets and the potential use of pre and probiotics are being explored. Furthermore, the importance of nutritional support, and possibly exercise during dialysis is being examined in terms of reducing anabolic resistance and catabolism. SUMMARY: Further research is required to better understand the nuances of the pathophysiology of disease-related malnutrition in CKD. This work should inform not only consistent terminology and the application of assessment tools specific to disease-related malnutrition in CKD but also the development of novel interventions that reflect its multifaceted pathophysiology and impact.

Integrating palliative care and heart failure: a protocol for a realist synthesis (PalliatHeartSynthesis).

INTRODUCTION: Heart failure affects over 26 million people worldwide with prevalence expected to grow due to an ageing global population. Palliative care can address the holistic needs of patients with heart failure, and integrated palliative care in heart failure management has been indicated to improve outcomes for patients. Despite known benefits for integrated palliative care in heart failure management, implementation is poor across the majority of global health services. Recent systematic reviews have identified the benefits of integrating palliative care into heart failure management and highlighted barriers to implementation. However, there was heterogeneity in terms of countries, healthcare settings, delivery by differing staff across multidisciplinary teams, modes of delivery and different intervention components. METHODS AND ANALYSIS: The aim of this study is to identify how integrated palliative care and heart failure interventions produce desired outcomes, in which contexts, and for which patients. We will undertake a realist synthesis to identify this, using Pawson's five iterative steps. We will recruit an international stakeholder group comprised of healthcare providers and patients with heart failure to advise and provide feedback throughout the review. Our initial realist programme theory sets out the necessary steps needed to accomplish the final intended outcome(s) from the implementation of integrated palliative care and heart failure. This initial programme theory will be shaped through an iterative process of testing and refinement. ETHICS AND DISSEMINATION: Ethical approval is not required for this study. With our stakeholder group, we will coproduce a user guide that outlines practical advice to optimise, tailor and implement interventions designed to integrate palliative care and heart failure, taking into consideration local context, alongside user-friendly summaries of the synthesis findings using short animations to convey complex findings. We will draw on the expertise within the stakeholder group to identify key stakeholders for disseminating to relevant audiences, ensuring outputs are tailored for their respective needs. PROSPERO REGISTRATION NUMBER: CRD42021240185.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients.

OBJECTIVES: To describe communication regarding cancer patient's end-of-life (EoL) wishes by physicians and family caregivers. METHODS: An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. RESULTS: For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was "clearly the best for the patient" or that it was "not necessary to discuss treatment with the patient". Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). CONCLUSIONS: There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

Resistance exercise and nutritional interventions for augmenting sarcopenia outcomes in chronic kidney disease: a narrative review.

Sarcopenia is an age-related progressive muscle disease characterized by loss of muscle mass, muscle strength and physical performance with high prevalence in chronic kidney disease (CKD). CKD is associated with decreased muscle protein synthesis and muscle breakdown due to a number of factors including, the uremic inflammatory environment of the disease. CKD patients are highly sedentary and at risk of malnutrition which may exacerbate sarcopenia outcomes even further. Short and long-term exercise and nutritional interventions have been studied and found to have some positive effects on sarcopenia measures in CKD. This narrative review summarized evidence between 2010 and 2020 of resistance exercise (RE) alone or combined with nutritional interventions for improving sarcopenia outcomes in CKD. Due to lack of CKD-specific sarcopenia measures, the second European Working Group on Sarcopenia in Older People (EWGSOP2) definition has been used to guide the selection of the studies. The literature search identified 14 resistance exercise-based studies and 5 nutrition plus RE interventional studies. Muscle strength outcomes were increased with longer intervention duration, intervention supervision, and high participant adherence. Data also suggested that CKD patients may require increased RE intensity and progressive loading to obtain detectable results in muscle mass. Unlike muscle strength and muscle mass, physical performance was readily improved by all types of exercise in long or short-term interventions. Four studies used RE with high-protein nutritional supplementation. These showed significant benefits on muscle strength and physical performance in dialysis patients while non-significant results were found in muscle mass. More research is needed to confirm if a combination of RE and vitamin D supplementation could act synergistically to improve muscle strength in CKD. The current evidence on progressive RE for sarcopenia in CKD is encouraging; however, real-life applications in clinical settings are still very limited. A multidisciplinary patient-centred approach with regular follow-up may be most beneficial due to the complexity of sarcopenia in CKD. Long-term randomized control trials are needed to verify optimal RE prescription and explore safety and efficacy of other nutritional interventions in CKD.

Palliative Care and Oncology in Colombia: The Potential of Integrated Care Delivery.

Palliative care is on the global health agenda, as only approximately 14% of people who require palliative care receive it [...].

A Critical Review of Multimodal Interventions for Cachexia.

Currently, there are no standardized treatments for cachexia or severe wasting. There is a growing consensus advocating multimodal interventions to address the complex pathogenesis and metabolic alterations in these conditions. This review examined multimodal treatments intended to alleviate and/or stabilize cachexia and severe wasting. The objectives of this review were to 1) identify multimodal interventions for the treatment of cachexia or associated wasting syndromes in patients with a chronic illness, 2) assess the quality of these studies, and 3) assess the effectiveness of multimodal interventions. Electronic databases including PubMed, MEDLINE, EMBASE, Scopus, Web of Science, Cochrane Library, CINAHL, PEDro, OpenGrey, and clinicaltrials.org were systematically searched using both text words and MeSH (medical subject heading) terms. The literature revealed a dearth of large, well-conducted trials in this area. Fourteen trials (n = 5 cancer, n = 5 chronic obstructive pulmonary disease, n = 4 chronic kidney disease) were included in this review. A total of 1026 patients were included across all studies; sample size ranged between 21 and 138 patients. Baseline and follow-up data were collected between 6 wk and 24 mo. All demonstrated some improvement in favor of the treatment groups, in relevant measures of body composition, nutrition, biomarkers, and functionality; however, caution should be applied due to the heterogenous nature of the interventions and small sample sizes. Overall, the evidence from this review supports the role of multimodal interventions in the treatment of severe wasting. However, randomized controlled trials with a powered sample size and sufficiently lengthy interaction period are necessary to assess if multimodal interventions are effective forms of therapy for improving body composition and nutritional and physical status in patients with cachexia and wasting. The protocol for this review is registered with Prospero (ID: CRD42019124374).