Palliative Care Interventions Research Articles

Palliative Care and Advance Care Planning Intervention Fidelity Monitoring: Methods and Lessons Learned From PCORI-Funded Large-Scale, Pragmatic Clinical Trials.

Over the past decade, the Patient-Centered Outcomes Research Institute (PCORI) funded multiple large-scale, comparative effectiveness clinical trials evaluating palliative care and advance care planning interventions. These are complex multicomponent interventions that need robust but flexible fidelity monitoring. Fidelity is necessary to maintain both internal and external validity within palliative care intervention research and to ultimately evaluate the real-world impact of high-quality interventions. Different trials not only took varying approaches to fidelity monitoring but also uncovered both unique and common challenges and facilitators. This article summarizes 8 of these trials and highlights approaches, adaptations, barriers, and facilitators for intervention fidelity monitoring. Identifying and delivering core elements while simultaneously allowing adaptations of noncore elements is a vital part of fidelity monitoring. Dissemination of such experiences can inform both future palliative care research as well as ongoing implementation of palliative care and advance care planning interventions across diverse clinical practices. Adoption of rigorous intervention fidelity methods is critical to advancing the science and reproducibility of palliative care interventions.

Conducting Comparative Effectiveness, Multisite Palliative Care and Advance Care Planning Trials: Lessons Learned and Future Directions From PCORI-Funded Studies.

The Patient-Centered Outcomes Research Institute (PCORI) funded multiple large-scale comparative effectiveness clinical trials evaluating palliative care (PC) and advance care planning (ACP) healthcare delivery models. This article provides an overview of the most common barriers our investigative teams encountered while implementing these trials and the strategies we utilized to overcome these challenges, with particular attention to identifying research partners for multisite trials; addressing contracting and regulatory issues; creating a team governance structure; training and engaging study staff across sites; recruiting, consenting, and enrolling study participants; collecting PC and ACP data and study outcomes; and managing multisite collaborations. The goal of this article is to provide guidance on how to best plan for and conduct rigorous trials evaluating PC and ACP healthcare delivery interventions moving forward.

It Starts With a Story: A Four-Step Narrative-Based Framework for Serious Illness Conversations.

Background: As a key component of advance care planning, serious illness conversations form a core intervention in palliative care. To achieve effective serious illness conversations, acknowledgment and inclusion of patient sense of self and identity are critical. However, no framework exists to describe how goals, values, and choices relate to patient identity. This conceptual gap hinders the advancement of palliative care education and practice. Objective: This philosophical investigation aimed to explicate two items: first, a novel conceptual framework for serious illness conversations; second, a structured approach to optimize these conversations within the palliative care clinical context. Methods: A philosophical and theoretical analysis was performed within an interdisciplinary context, by scholars in palliative care, medical humanities, philosophy, and bioethics. Key literature in psychology, qualitative research on the experience of serious illness, medical ethics, and choice architecture in medical decision-making were reviewed, and a structured conceptual and narrative analysis was performed. Results: An original and innovative identity-centered conceptual framework for serious illness conversations was developed. The framework consists of a four-step, reproducible approach: (1) attend to patient narrative identity, (2) identify values, (3) cocreate goals, and (4) actively promote choices. In short: attend, identify, create, and promote (AICP). Discussion: By using this conceptual framework and four-step approach, clinicians can accomplish goal-concordant serious illness care and build rich clinical relationships that foster trust and goodwill.

Developing and Evaluating a Care Pathway for Improving Palliative Care in Western Norway.

Background: To operationalize the palliative care approach and improve care across services, a palliative care pathway (PCP) was developed in Western Norway. The PCP is an evidence-based framework for palliative care assessment and interventions in the form of a web-based flowchart. Measures: An electronic questionnaire aimed at health care professionals (HCPs) examined perceived usability and content. We registered PCP webpage activity and conducted an evaluation seminar and group interviews. Intervention: The pathway was developed (2015) and piloted in two cities (2017-2018/2020). Outcomes: HCPs perceived that the PCP contributed to increased palliative care knowledge and skills and worked as a reference and educational tool. They found the PCP easily accessible but asked for a search option and easier webpage navigation. Conclusions/Lessons Learned: An available PCP can support a common language for palliative care in different settings and enhance patient-centered care. HCPs need time to familiarize themselves with its content and use.

Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes-the EMBED-Care Framework. A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

Effectiveness and Feasibility of Home-Based Palliative Care Interventions for Geriatric Oncology Patients: A Systematic Review Using Narrative Synthesis.

Due to an urgent need to develop palliative care services for geriatric patients with advanced cancer, an overview of available information regarding home-based palliative care interventions would be valuable. To summarize current literature for interventions targeted to homebound, older patients with incurable cancer, and investigate whether these patients can be benefited from home-based palliative care and achieve improved outcomes. A search strategy consisting of terms related to home care, palliation, oncology, and geriatrics was employed. A protocol following PRISMA guidelines was prospectively uploaded at PROSPERO (ID = CRD42023404675). Pubmed (MEDLINE), Cochrane Central Register of Controlled Trials (CENTRAL), ClinicalTrials.gov, and Epistemonikos.org databases were searched from inception until the present day. Eligibility criteria were selected based on the research question, the population of interest, and the research design. The Risk of Bias Assessment Tool version 2 (RoB-2) was used to appraise study quality. A total of 10 articles including 871 patients (out of 1236 titles and 141 fully-reviewed texts) were selected. Four studies assessed exercise interventions, two evaluated multi-component home-care models, two focused on supervision services, and two had nutrition and activity components. Eight studies reported improved outcomes in either specified or mixed cancer geriatric populations. There is a scarcity of clinical trials regarding home-based palliative care for geriatric oncology patients, resulting in poor information and a lack of evidence. At-home interventions seem feasible and have a positive effect on pain management and functional status, but more high-quality studies are required.

The influence of care home registration type and size on senior care leader’s confidence to provide palliative and end-of-life care: an explanatory sequential mixed methods study

BackgroundCare home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader’s confidence in their ability to provide optimal palliative and end-of-life care.AimTo understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader’s confidence to provide palliative and end-of-life care.DesignAn explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A ‘Following the Thread’ method was undertaken for data integration.Setting/participantsUK care home senior care leaders, purposively sampled by registration type, size and geographical location.ResultsThe online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) ‘feelings of preparedness’ stemming from staff expertise and experience and care home infrastructure, (2) ‘partnership working’ with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance.ConclusionCare home senior care leader’s confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.

An App Platform-Facilitated Collaborative Palliative Care Intervention for Outpatients With Interstitial Lung Disease: A Pilot Randomized Trial.

Rationale: Outpatients with interstitial lung disease often experience serious symptoms, yet infrequently receive palliative care. Objective: To determine the feasibility and clinical impact of a mobile application (PCplanner) in an outpatient setting. Methods: We conducted a pilot randomized controlled trial among adults with interstitial lung disease in a single-center academic clinic. Clinical outcomes included change in Needs at the End-of-Life Screening Tool (NEST) scale between baseline and 3 months as well as frequency of advance care planning discussions and referrals to palliative care services. Results: Observed feasibility outcomes were similar to targeted benchmarks including randomization rates (82.1% vs 80%) and retention (84.8% vs 80%). Mean NEST scores between the intervention and control group were 38.9 (SD, 18.9) vs 41.5 (SD, 20.5) at baseline, 34.6 (SD, 18.9) vs 33.6 (SD, 19.4) at 1 month after clinic visit, 40.5 (SD, 21.6) vs 35.3 (SD, 25.0) at 3 months after clinic visit. Changes in NEST scores between baseline and 3 months showed no difference in the primary outcome (P = 0.481, 95% CI [-8.45, 17.62]). Conclusion: Among patients with interstitial lung disease, a mobile app designed to focus patients and clinicians on palliative care principles demonstrated evidence of feasibility. Although changes in self-reported needs were similar between intervention and control groups, more patients in the intervention group updated their advance directives and code status compared to the control group. Clinical Trial Registration: Palliative Care Planner (PCplanner) NCT05095363. https://www.clinicaltrials.gov/study/NCT05095363.

Palliative care case management in a surgical department for patients with gastrointestinal cancer—a register-based cohort study

BackgroundThe effectiveness of generalist palliative care interventions in hospitals is unknown.AimThis study aimed to explore the impact of a palliative care case management intervention for patients with gastrointestinal cancer (PalMaGiC) on hospital admissions, healthcare use, and place of death.DesignThis was a register-based cohort study analyzing data from the Danish Register on Causes of Death, the Danish National Patient Register, and the Danish Palliative Database.Setting/participantsDeceased patients with gastrointestinal cancer from 2010 to 2020 exposed to PalMaGiC were compared over three periods of time to patients receiving standard care.ResultsA total of 43,969 patients with gastrointestinal cancers were included in the study, of whom 1518 were exposed to PalMaGiC. In the last 30 days of life, exposed patients were significantly more likely to be hospitalized (OR of 1.62 (95% CI 1.26–2.01)), spend more days at the hospital, estimate of 1.21 (95% CI 1.02–1.44), and have a higher number of hospital admissions (RR of 1.13 (95% CI 1.01–1.27)), and were more likely to die at the hospital (OR of 1.94 (95% CI 1.55–2.44)) with an increasing trend over time. No differences were found for hospital healthcare use.ConclusionPatients exposed to the PalMaGiC intervention had a greater likelihood of hospitalizations and death at the hospital compared to unexposed patients, despite the opposite intention. Sensitivity analyses show that regional differences may hold some of the explanation for this. Future development of generalist palliative care in hospitals should focus on integrating a home-based approach, community care, and PC physician involvement.

Palliative care outcome measures used in head and neck cancer: A scoping review.

The palliative care (PC) needs of patients with head and neck cancer (HNC) are complex, due to high and unique symptom burdens. Uniform outcome measures are critical to assessing the impact of PC interventions in HNC. A scoping review of outcome measures used in patients with HNC receiving PC was performed using PubMed, Embase, and Web of Science from 1980 to 2022. Of 20 eligible studies, 19 unique instruments were identified which assessed 22 physical, 5 mental, 4 social, 7 related quality of life, and 9 advanced care planning outcomes. Instruments were underutilized, with a larger number of outcomes measurable for instruments used than were reported. The average instrument assessed three domains whereas the average study only reported outcomes from two domains. Comparison across studies is limited due to heterogeneity in outcome measures. Future work is needed to develop core PC outcome measures for use in HNC care.

Spiritual care interventions for palliative care patients: A scoping review.

To identify and map spiritual care interventions to address spiritual needs and alleviate suffering of patients in the context of palliative care. A scoping review using the PRISMA ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was conducted according to the JBI (Joanna Briggs Institute) guidelines. The search was conducted from October 2022 to January 2023 using 9 electronic databases and gray literature. Studies on spiritual care interventions in palliative care were included. Disagreements between the 2 reviewers were resolved by discussion or a third reviewer. A total of 47 studies were included in this review. All selected articles were published between 2003 and 2022. In total, 8 types of spiritual care interventions were identified to assess spiritual needs and/or alleviate suffering: conversations between the patient and a team member, religious practice interventions, therapeutic presence, guided music therapy, multidisciplinary interventions, guided meditation, art therapy, and combined interventions with multiple components such as music, art, integrative therapy, and reflection. Our study identified few spiritual care interventions in palliative care worldwide. Although this review noted a gradual increase in studies, there is a need to improve the reporting quality of spiritual care interventions, so they can be replicated in other contexts. The different interventions identified in this review can be a contribution to palliative care teams as they provide a basis for what is currently being done internationally to alleviate suffering in palliative care and what can be improved. No patient or public contribution was required to design or undertake this methodological research.

Palliative care needs and integration in severe COPD and ILD: Protocol of a mixed method study (PCIntegCOPD-ILD)

Background and Aim Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD) have high symptom burden, serious health-related suffering, and mortality that necessitate palliative care (PC) integration. There is an information gap on PC needs, symptom burden, anxiety and depression in COPD and ILD, and the feasibility of PC integration from low-middle-income countries (LMICs). The PCIntegCOPD-ILD study aims to identify PC needs, symptom burden, and psychological distress in severe COPD/ ILD and assess the feasibility of PC integration within standard care. It will also explore experiences and unmet needs relating to disease and PC services for patients and informal carers. Methods and Design This mixed-methods study will assess PC needs, symptom burden, and psychological distress in patients with severe COPD (stages C, D) and ILD (stages II, III). Assessment will be done at recruitment (T0) and third (T3) month (face-to-face) and first (T1) and second (T2) month (phone call). After initial recruitment, patients will be provided PC interventions as required. At T3, patients’ and informal carers’ experiences and unmet needs of disease and PC services will be explored through semi-structured interviews. Impact and feasibility of integration of PC within standard care will also be assessed. Discussion The PCIntegCOPD-ILD study will provide robust data on PC needs, symptom burden, psychological distress and understanding of patient and caregiver perspecitves in severe COPD and ILD. An objective information on feasibility of PC integration will inform development and evaluation of similar models in the management of other progressive chronic diseases in LMICs.

Social support resources in adolescents and young adults with advanced cancer: a qualitative analysis

PurposeAdolescents 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.MethodsAYAs 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.ResultsWe 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.ConclusionAYAs 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.

Risk Factors for All-Cause Mortality in Patients Diagnosed with Advanced Heart Failure: A Scoping Review.

Introduction: Identifying the evolving needs of patients with advanced heart failure (AdHF) and triaging those at high risk of death can facilitate timely referrals to palliative care and advance patient-centered individualized care. There are limited models specific for patients with end-stage HF. We aim to identify risk factors associated with up to three-year all-cause mortality (ACM) and describe prognostic models developed or validated in AdHF populations. Methods: Frameworks proposed by Arksey, O'Malley, and Levac were adopted for this scoping review. We searched the Medline, EMBASE, PubMed, CINAHL, Cochrane library, Web of Science and gray literature databases for articles published between January 2010 and September 2020. Primary studies that included adults aged ≥ 18 years, diagnosed with AdHF defined as New York Heart Association class III/IV, American Heart Association/American College of Cardiology Stage D, end-stage HF, and assessed for risk factors associated with up to three-year ACM using multivariate analysis were included. Studies were appraised using the Quality of Prognostic Studies tool. Data were analyzed using a narrative synthesis approach. Results: We reviewed 167 risk factors that were associated with up to three-year ACM and prognostic models specific to AdHF patients across 65 articles with low-to-moderate bias. Studies were mostly based in Western and/or European cohorts (n = 60), in the acute care setting (n = 56), and derived from clinical trials (n = 40). Risk factors were grouped into six domains. Variables related to cardiovascular and overall health were frequently assessed. Ten prognostic models developed/validated on AdHF patients displayed acceptable model performance [area under the curve (AUC) range: 0.71-0.81]. Among the ten models, the model for end-stage-liver disease (MELD-XI) and acute decompensated HF with N-terminal pro b-type natriuretic peptide (ADHF/proBNP) model attained the highest discriminatory performance against short-term ACM (AUC: 0.81). Conclusions: To enable timely referrals to palliative care interventions, further research is required to develop or validate prognostic models that consider the evolving landscape of AdHF management.

Palliative Care Acceptability for Older Adults with Advanced CKD: A Qualitative Study of Patients and Nephrologists

Older adults in the United States often receive kidney therapies that do not align with their goals. Palliative care (PC) specialists are experts in assisting patients with the goals of care discussions and decision support, yet views and experiences of older patients who have received PC while contemplating kidney therapy decisions and their nephrologists remain unexplored. We evaluated the acceptability of CKD-EDU, a PC-based kidney therapy decision support intervention for adults≥75 years of age. Qualitative study. Two trained research coordinators interviewed patients and nephrologists participating in the CKD-EDU study. Three coders analyzed the qualitative data using a thematic analysis approach to identify salient themes pertaining to intervention acceptability. Patients (n=19; mean age: 80 years) viewed the PC intervention favorably, noting PCphysicians' excellent communication skills, whole-person care, and decision-making support, including comprehension of prognostic information. Nephrologists (n=24; mean age) welcomed PC assistance in decision making, support for conservative kidney management, and symptom management; a minority voiced concerns about third-party involvement in their practice. Single-center study. Overall, patients and nephrologists generally found the PC intervention to beacceptable. Future testing of the current PC-based decision support intervention in a larger randomized controlled trial for older people navigating kidney therapy decisions is needed.

Impact of early palliative care intervention in autologous bone marrow transplantation: feasibility of a multicentric study

IntroductionThis prospective multicentre study evaluates the impact of Palliative Care Unit (PCU) intervention (Experimental Group, EG), during autologous hematopoietic stem cell transplantation (AHSCT) on quality of life (QoL), symptom control and healthcare resource use compared to standard practice (Control Group, CG). We used validated scales on Days 0 (stem cell infusion), + 7 (bone marrow aplasia, acute symptoms) and + 21 (aplasia recovery).ResultsIn 40 patients (20 EG/ 20 CG: 45%/25% female, median age 57.5/59), QoL differed significantly at Day + 7 (EG: median 0.50; CG: -63.00; p < 0.001) and Day + 21 (EG: -2.00; CG: -129.00; p < 0.001). On Day 0, mean FACT-BMT scores were CG/EG: 131/ 89.35, reflecting the pre-transplant intervention of the PCU in EG patients. For pain (EG median 0.00, CG median 2.50; p = 0.01), 45% EG patients used opioids on day 0 (mean 38.5 mg morphine/day/patient). Reduced pain control impacted nutritional support (parenteral nutrition 45% CG, 5% EG; p = 0.08). Hospitalisation duration was longer in CG (median 18.5; EG median 13.00; p < 0.001). Despite the short follow-up and small sample size, PCU and HD collaboration improves QoL and symptom management during acute AHSCT, evident through pain control, analgesia management, reduced parenteral nutrition need and shorter hospital stays.

Prevalence of anxiety and depression among cancer patients attending tertiary care hospital in Puducherry – A cross-sectional study

Objectives: Palliative care interventions for cancer patients are usually more effective when they provide them with cues for using the knowledge related to their disease, which helps them adjust and live through the different phases of the illness. The objective of the study is to find the prevalence of anxiety and depression among cancer patients and to assess their quality of life (QOL). Material and Methods: Hospital-based cross-sectional study was conducted among 226 oncology patients attending tertiary care hospitals. After obtaining consent, one-to-one interviews were conducted with cancer patients using a standard questionnaire. Depression anxiety stress scale 21 scale and World Health Organization Quality of Life Brief Version (WHOQOL-BREF) scale were used. Ethical principles were adhered throughout the study. Data were analyzed using the Statistical Package for the Social Sciences software. Results: Out of 226 cancer patients, majority of them 151 (66.8%) were in the age group of 30–59 years and 148 (66.5%) were female. It was found that 62 (27.4%) had stress, 178 (78.8%) had anxiety and 154 (68.1%) were in depression. The mean raw score in overall QOL is 3.27 ± 0.94 standard deviation (SD) and in general health is 3.46 ± 0.81) (SD). Marital status (P = 0.001) and duration since the diagnosis of cancer (P = 0.005) had significant association with the environmental domain of the QOL of patients. Conclusion: This study emphasizes the need for palliative care for psychosocial support to cancer patient to improve their QOL. Comprehensive management for cancer patients by providing family support and a patient-friendly environment is needed.

Memory-making interventions for children and their families receiving pediatric palliative or bereavement care: A systematic review protocol.

In paediatric palliative and bereavement care, providing comprehensive support that extends beyond medical treatment to address the emotional and psychosocial needs of children and their families is essential. Memory-making interventions play a critical role in capturing cherished moments and fostering emotional resilience. However, widespread consensus on the foundation and scope of memory-making interventions for children and young people remains sparse. This review aims to identify, appraise, and synthesise the evidence on memory-making interventions for children and young people with life-limiting or life-threatening conditions and their family members receiving palliative or bereavement care. This systematic review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). A systematic search will be undertaken from January 1, 1985, to February 27, 2024, across the following databases: PubMed, EMBASE, CINAHL (EBSCO), PsycINFO (EBSCO), Web of Science, the Cochrane Library, and Scopus. Studies across diverse research designs that examine children (0-19 years) with life-limiting or life-threatening conditions undergoing memory-making interventions with psychosocial or other outcomes will be included. Screening, data extraction, and quality appraisal will be performed by two independent reviewers, with a third reviewer resolving discrepancies. Joanna Briggs Institute guidelines for conducting mixed methods systematic reviews will be used to inform the data analysis and synthesis process. This review will provide critical insights into the existing evidence base on memory-making interventions in paediatric palliative and bereavement care, highlighting psychosocial and other impacts, implementation factors, and evidence quality. By identifying best practices and gaps in knowledge, this evidence review may inform future research and intervention design, or adaptation, and contribute to the enhancement of healthcare for children and young people with life-limiting and life-threatening conditions and their families as well as families in bereavement. This review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (CRD42024521388; 18/03/2024).

Assessment of quality of life in head and neck cancer patients visiting the Palliative Care outpatient department in a tertiary care oncology centre in India.

Patients with head and neck cancers (HNCs) are at an increased risk of developing functional symptoms associated with eating, speaking, and breathing along with symptoms caused by a fungating tumour (e.g., cosmetic change, malodor, and bleeding). These may substantially reduce their physical functioning and quality of life (QoL). This observational study aimed to find out the QoL in patients with HNC in a tertiary care oncology centre. A prospective observational study was conducted in adult patients diagnosed with HNC. The patients were divided depending upon their disease extent into early, advanced, and very advanced local disease. The physical, cognitive, emotional, financial and social domains were assessed using a validated Hindi version of the European Organisation for Research and Treatment of cancer (EORTC)- QoL 30 and EORTC H&N 35 at baseline and 3 months. A total of 100 patients were assessed with a mean age of 49.3 ± 12.4 years. Most of the patients had carcinoma buccal mucosa (42%) followed by carcinoma tongue (17%). The patients experienced difficulties with physical functioning and deterioration in emotional functioning. Pain and fatigue were the major problematic symptoms especially in advanced disease patients resulting in poor QoL. There was a significant improvement in various domains of QoL at 3 months follow-up in those with advanced disease. The fatigue scores at baseline and follow-up showed a positive correlation with other symptoms. Patients with HNC have a high symptom burden that leads to poor QoL. Appropriate palliative care interventions help to decrease symptom burden and prevent deterioration of their QoL in patients with HNC.

Palliative care and end stage liver disease: A survey study comparing perspectives of hepatology and palliative care physicians and clinical scenarios that could require palliative care intervention

Background and aimsThe prevalence and mortality of chronic liver disease has risen significantly. In end stage liver disease (ESLD) the survival of patients is approximately 2 years. Despite the poor prognosis and high symptom burden of these patients, integration of palliative care is reduced. We aim to analyze the agreement between palliative care and hepatology physicians of clinical scenarios that could require palliative care intervention. MethodsA cross-sectional study was conducted. Palliative care and hepatology physicians were surveyed. Using a five-point Likert scale, their perceptions of palliative care in ESLD were rated. Their agreement in clinical scenarios that could require palliative care intervention were evaluated. Analyses were conducted to assess any differences by primary role (hepatology vs. palliative care) and length of practice (<10 years vs. 10 years). ResultsA total of 123 responses were obtained: 52% from palliative care and 48% from hepatology. The majority (66.7%) work in the field for up to ten years. There was a great consensus in 4 of the 8 clinical scenarios. In scenarios with less consensus, the area of activity and length of practice influence the reliance of physicians on palliative care. Involvement of palliative care in ESLD was considered “rare” by 30% and 61% consider difficult to predict the prognosis. More than 90% support medical training in both areas of activity. ConclusionThe current involvement of palliative care is considered low, but there are clinical conditions that reveal a clear consensus and there's a unanimous view of the relevance of training.