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BackgroundDecision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.ObjectivesTo identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.MethodsA systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.ResultsAfter full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other’s preferences for care. Patients’ advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.ConclusionsPatients and family caregivers in palliative care can accommodate each other’s preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

Background and purposeSince 2001, symptom cluster research has grown considerably. However, because multiple methodological considerations remain, ongoing synthesis of the literature is needed to identify gaps in this area of symptom science. This systematic review evaluated the progress in symptom clusters research in adults receiving primary or adjuvant chemotherapy since 2016.MethodsEligible studies were published in English between 1 January 2017 and 17 May 2021; evaluated for and identified symptom clusters ‘de novo;’ and included only adults being treated with primary or adjuvant chemotherapy. Studies were excluded if patients had advanced cancer or were receiving palliative chemotherapy; symptoms were measured after treatment; symptom clusters were pre-specified or a patient-centred analytic approach was used. For each study, symptom instrument(s); statistical methods and symptom dimension(s) used to create the clusters; whether symptoms were allowed to load on more than one factor; method used to assess for stability of symptom clusters and associations with secondary outcomes and biomarkers were extracted.ResultsTwenty-three studies were included. Memorial Symptom Assessment Scale was the most common instrument and exploratory factor analysis was the most common statistical method used to identify symptom clusters. Psychological, gastrointestinal, and nutritional clusters were the most commonly identified clusters. Only the psychological cluster remained relatively stable over time. Only five studies evaluated for secondary outcomes.DiscussionWhile symptom cluster research has evolved, clear criteria to evaluate the stability of symptom clusters and standardised nomenclature for naming clusters are needed. Additional research is needed to evaluate the biological mechanism(s) for symptom clusters.PROSPERO registration numberCRD42021240216.

ContextLate or residual symptoms diminish quality of life for many cancer survivors after completion of treatment.ObjectivesExamine risk factors associated with persisting symptom burden after chemotherapy and the lack of symptom improvement over time.MethodsSurvivors who completed curative-intent chemotherapy within two years for solid tumors were enrolled into a symptom management trial. There were 375 survivors with two or more comorbid conditions or one comorbid condition and elevated depressive symptoms (pre-defined risk factors in the trial design) who received interventions and 71 survivors without these risk factors who did not receive interventions. For all survivors, symptoms were assessed at intake, 4, and 13 weeks and categorized as mild, moderate, or severe based on the interference with daily life. The probabilities of moderate or severe symptoms and symptom improvement were analyzed using generalized mixed-effects models in relation to comorbidity, depressive symptoms, age, sex, race/ethnicity, employment, time since chemotherapy completion, and physical function. Multiple symptoms were treated as nested within the survivor.ResultsModerate or severe symptoms at baseline and the lack of improvement over time were associated with younger age and lower physical function over and above a greater number of comorbidities and elevated severity of depressive symptoms.ConclusionRisk factors identified in this research (younger age, lower physical function, greater comorbidity, and higher depressive symptoms) can be used to allocate resources for post-treatment symptom management for cancer survivors in order to relieve symptoms that do not necessarily resolve with time.

Purpose To compare the impact of exercise and mind–body prehabilitation interventions on changes in quality of life and cancer treatment-related symptoms in women with newly diagnosed breast cancer. Methods The following describes a secondary analysis of a randomized window of opportunity trial (The Pre-Operative Health and Body Study). Forty-nine women were randomized to participate in either an exercise prehabilitation intervention or a mind–body prehabilitation intervention from the time of enrollment to surgery. Participants ( N  = 47) completed measures of quality of life, anxiety, depression, and stress at the time of enrollment (T1), post-intervention/surgery (T2), and one-month post-surgery (T3). Changes in outcome measures between groups were compared over time using longitudinal models. Results Mind–body group participants experienced significant improvements in cognitive functioning in comparison to exercise group participants between T1 and T3 (difference in average change : -9.61, p  = 0.04, d  = 0.31), otherwise, there were no significant differences between groups. Within group comparisons demonstrated that both groups experienced improvements in anxiety (exercise: average change  = -1.18, p  = 0.03, d  = 0.34; mind–body: average change  = -1.69, p  = 0.006, d  = 0.43) and stress (exercise: average change  = -2.33, p  = 0.04, d  = 0.30; mind–body: average change  = -2.59, p  = 0.05, d  = 0.29), while mind–body group participants experienced improvements in insomnia ( average change  = -10.03, p  = 0.04, d  = 0.30) and cognitive functioning ( average change  = 13.16, p  = 0.0003, d  = 0.67). Conclusions Both prehabilitation interventions impacted cancer treatment-related symptoms. Further work in larger groups of patients is needed to evaluate the efficacy of prehabilitation interventions on quality of life in women with breast cancer. Pre-operative exercise and mind–body interventions may impact physical and/or psychological effects of cancer diagnosis and treatment in women with breast cancer. Trial registration ClinicalTrials.gov Identifier: NCT01516190. Registered January 24, 2012.

Purpose Children with acute leukemia have suffered from a considerable symptom burden during chemotherapy. However, few studies have focused on exploring the mechanisms among symptoms in children with acute leukemia. Our study aims to explore core symptoms and describe the interrelationships among symptoms in children with acute leukemia during chemotherapy. Methods From January 2021 to March 2023, 469 children with acute leukemia were recruited from 20 Chinese cities. The Memorial Symptom Assessment Scale 10–18 (MSAS 10–18) was used to evaluate the prevalence and severity of symptoms during chemotherapy. A network analysis was performed by the R software based on 31 symptoms. Centrality indices and density were used to explore core symptoms and describe interrelationships among symptoms in the network during chemotherapy. Results Worrying and feeling irritable were the central symptoms across the three centrality indices, including strength, closeness, and betweenness. Lack of energy was the most prevalent symptom; however, it was less central than other symptoms. The density of the \"induction and remission\" network significantly differed from other cycles' counterparts ( p  < 0.001). Global strength was greater in the \" ≥ 8 years group \" network than the \" < 8 years group \" network ( p  = 0.023). Conclusion Network analysis provides a novel approach to identifying the core symptoms and understanding the interrelationships among symptoms. Our study indicates the need to assess emotional symptoms in children with acute leukemia during chemotherapy, especially during the induction and remission phases, as well as in older children. Future research is imperative to construct trajectories of dynamic symptom networks and centrality indices in longitudinal data to investigate the causal relationships among symptoms.

Postoperative thirst is common in patients admitted to the intensive care unit. Existing methods like wet cotton swabs or oral care prove ineffectual or operationally intricate. Currently, an efficacious postoperative thirst alleviation method remains elusive. Exploring a prompt, safe, and efficacious solution is of paramount importance. To assess the effect of ice-cold water spray applied following a symptom management model on postoperative thirst and to establish a framework for mitigating thirst in intensive care unit patients. Single-center randomized controlled study. Surgical intensive care unit in a university-affiliated hospital. 56 intensive care unit patients were selected and equally randomized. The experimental group received ice-cold water spray in conjunction with eight symptom management strategies, while the control group underwent standard care involving wet cotton swabs. Thirst intervention was initiated 0.5 hours after postoperative extubation, followed by subsequent interventions at 2-hour, 4-hour, and 6-hour intervals post-extubation. Thirst intensity, oral comfort, and the duration of relief from thirst were assessed and compared between groups before and 0.5 hours after each thirst intervention. Across different interventions, the experimental group exhibited superior scores in thirst intensity and oral comfort compared to the control group. Additionally, the nursing time required to alleviate thirst in the experimental group was significantly shorter than that in the control group (P < 0.01). Ice-cold water spray following the model for symptom management can effectively mitigate the postoperative thirst intensity in intensive care unit patients, improve oral comfort, and reduce the nursing time for relieving thirst. Clinical nurses can employ ice-cold water spray following the model for symptom management to ameliorate postoperative thirst intensity in ICU patients while enhancing oral comfort. Furthermore, the utilization of ice-cold water spray can reduce the nursing time required for relieving postoperative thirst in intensive care unit patients.

Background In 2023, it was estimated that at least 65 million individuals had Long Covid (LC). Yet the literature reveals a lack of knowledge on how individuals perceive and experience LC symptoms. This study aims to explore how individuals with Long Covid describe their symptoms across physical, cognitive, emotional, social, and behavioural dimensions, and to analyse these experiences through the lens of the Symptom Management Theory (SMT) using a phenomenological and netnographic approach to spontaneous patient narratives. Methods A netnographic study was conducted on 63 selected participants in France from 19 April 2020 to 31 December 2022. Narratives were first analysed phenomenologically using TROPES software. Verbatims were then coded through content analysis with NVivo12Pro and organised according to the SMT dimensions of symptom experience. Results The study revealed that the testimonies of Long Covid patients are characterized by an argumentative, personal, and chronological discourse, highlighting the intensity of persistent symptoms and their significant impact on daily life. The most frequent symptoms identified include bodily pain, respiratory issues, chronic fatigue, as well as sensory and cognitive disturbances, along with significant emotional and social challenges. Conclusions Our study demonstrates the profound and multidimensional impact of Long Covid on patients’ daily lives, highlighting the need for a holistic, integrated approach to its management, considering affective, cognitive, behavioural, physical, and social dimensions to improve patients’ quality of life. Practical implications Understanding the lived experiences of LC patients can guide healthcare services in providing more targeted, empathetic, and effective support.

Purpose The use of electronic patient-reported outcome (ePRO) data in routine care has been tied to direct patient benefits such as improved quality of care and symptom control and even overall survival. The modes of action behind such benefits are seldom described in detail. Here, we describe the development of a model of care leveraging ePRO data to monitor and manage symptoms of patients treated with immune checkpoint inhibitors. Methods Development was split into four stages: (1) identification of an underlying theoretical framework, (2) the selection of an ePRO measure (ePROM), (3) the adaptation of an electronic application to collect ePRO data, and (4) the description of an ePRO-oriented workflow. The model of care is currently evaluated in a bicentric longitudinal randomized controlled phase II trial, the IePRO study. Results The IePRO model of care is grounded in the eHealth Enhanced Chronic Care Model. Patients are prompted to report symptoms using an electronic mobile application. Triage nurses are alerted, review the reported symptoms, and contact patients in case of a new or worsening symptom. Nurses use the UKONS 24-hour telephone triage tool to issue patient management recommendations to the oncology team. Adapted care coordinating procedures facilitate team collaboration and provide patients with timely feedback. Conclusion This report clarifies how components of care are created and modified to leverage ePRO to enhance care. The model describes a workflow that enables care teams to be proactive and provide patients with timely, multidisciplinary support to manage symptoms.

BackgroundThe use of virtual reality (VR) is increasing in palliative care. However, despite increasing interest in VR, there is little evidence of how this technology can be implemented into practice.AimsThis paper aims to: (1) explore the feasibility of implementing VR therapy, for patients and caregivers, in a hospital specialist inpatient palliative care unit and a hospice, and (2) to identify questions for organisations, to support VR adoption in palliative care.MethodsThe Samsung Gear VR system was used in a hospital specialist palliative inpatient unit and a hospice. Patients and caregivers received VR distraction therapy and provided feedback of their experience. Staff completed a feedback questionnaire to explore their opinion of the usefulness of VR in palliative care. A public engagement event was conducted, to identify questions to support implementation of VR in palliative care settings.ResultsFifteen individuals (12 (80%) patients and 3 (20%) caregivers) participated. All had a positive experience. No adverse effects were reported. Ten items were identified for organisations to consider ahead of adoption of VR in palliative care. These were questions about: the purpose of VR; intended population; supporting evidence; session duration; equipment choice; infection control issues; content choice; setting of VR; person(s) responsible for delivery and the maintenance plan.ConclusionsIt is feasible to use VR therapy in palliative care; however, further evidence about its efficacy and effectiveness is needed. Palliative care practitioners considering VR use should carefully consider several factors, to ensure that this technology can be used safely and effectively in clinical practice.

Introduction Chronic heart failure (CHF) affects millions and burdens health systems through high morbidity and mortality. Guidelines emphasise the need for self‐management. Yet the specific strategies patients use to perceive, appraise, and respond to symptoms remain insufficiently described. Symptom management is a core component of self‐management and directly shapes illness trajectories and quality of life. Objectives To identify and map behaviours and strategies of adults with CHF to manage symptoms in daily life. Methods We conducted a scoping review of MEDLINE (PubMed), CINAHL (EBSCOhost), Livivo and Cochrane Library (2006–2024). Data were analysed using Mayring's qualitative content analysis. Categories were derived deductively from heart failure guidelines and Dodd's Symptom Management Model and inductively from included studies. The category system was aligned with Dodd's Symptom Management Model, which guided the structuring of findings into symptom experience, management strategies, and outcomes. Results Thirty‐one reports (qualitative, quantitative, mixed methods) met the inclusion criteria. Patients deploy diverse strategies across five domains: medication management, symptom monitoring, adjustment of daily activities, fluid and weight management, and lifestyle modification. Social support is pivotal. Many patients deviate from recommendations to balance demands, gaining short‐term relief at the potential expense of long‐term control. Such deviations function as pragmatic coping and indicate unmet information and structural needs. Discussion Patients’ behaviours are integral to symptom management and should inform context‐sensitive professional support and care. Involving family members and utilising digital tools could enhance monitoring, decision‐making, and quality of life. Future work should apply Dodd's Symptom Management Model to clarify links between symptom experience, strategies, and outcomes and to develop approaches feasible and compatible with daily life. Patient or Public Contribution After completing the core scoping review work, we conducted a PPIE session with a person living with heart failure (NYHA III) to validate the category system, the presentation of results, and practice implications. The feedback enhanced interpretability (micro‐level strategies) and supported a destigmatising view of non‐recommended behaviours.