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Revista Da Associacao Medica Brasileira... 2024
Review
Topics: Humans; Glioblastoma; Palliative Care; Brain Neoplasms
PubMed: 38865542
DOI: 10.1590/1806-9282.2024S122 -
BMJ Supportive & Palliative Care May 2024Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun...
BACKGROUND
Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach.
METHODS
Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications.
RESULTS
21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed.
CONCLUSIONS
Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.
Topics: Social Media; Humans; Palliative Care; Terminal Care
PubMed: 38594059
DOI: 10.1136/spcare-2023-004579 -
Journal of Pain and Symptom Management Feb 2024Advance care planning (ACP) improves care for patients with chronic illnesses and reduces family stress. However, the impact of ACP interventions on healthcare... (Review)
Review
CONTEXT
Advance care planning (ACP) improves care for patients with chronic illnesses and reduces family stress. However, the impact of ACP interventions on healthcare professionals' well-being remains unknown.
OBJECTIVE
To systematically review the literature evaluating the impact of ACP interventions on healthcare professionals' well-being.
METHODS
We followed the Joanna Briggs Institute methodology for systematic reviews and registered the protocol in PROSPERO (CRD42022346354). We included primary studies in all languages that assessed the well-being of healthcare professionals in ACP interventions. We excluded any studies on ACP in psychiatric care and in palliative care that did not address goals of care. Searches were conducted on April 4, 2022, and March 6, 2023 in Embase, CINAHL, Web of Science, and PubMed. We used the Mixed Methods Appraisal Tool for quality analysis. We present results as a narrative synthesis because of their heterogeneity.
RESULTS
We included 21 articles published in English between 1997 and 2021 with 17 published after 2019. All were conducted in high-income countries, and they involved a total of 1278 participants. Three reported an interprofessional intervention and two included patient partners. Studies had significant methodological flaws but most reported that ACP had a possible positive impact on healthcare professionals' well-being.
CONCLUSION
This review is the first to explore the impact of ACP interventions on healthcare professionals' well-being. ACP interventions appear to have a positive impact, but high-quality studies are scarce. Further research is needed, particularly using more rigorous and systematic methods to implement interventions and report results.
Topics: Humans; Advance Care Planning; Delivery of Health Care; Health Personnel; Palliative Care
PubMed: 37827454
DOI: 10.1016/j.jpainsymman.2023.09.026 -
Journal of Pain and Symptom Management Oct 2023Black patients experience health disparities in access and quality of care. (Review)
Review
CONTEXT
Black patients experience health disparities in access and quality of care.
OBJECTIVE
To identify and characterize the literature on the experiences of Black patients with serious illness across multiple domains - physical, spiritual, emotional, cultural, and healthcare utilization.
METHODS
We conducted a scoping review of US literature from the last ten years using the PRISMA-ScR framework. PubMed was used to conduct a comprehensive search, followed by recursive citation searches in Scopus. Two reviewers screened the resulting citations to determine eligibility for inclusion and extracted data, including study methods and sample populations. The included articles were categorized by topic and then further organized using the Social-Ecological Model.
RESULTS
From an initial review of 433 articles, a final sample of 160 were included in the scoping review. The majority of articles used quantitative research methods and were published in the last four years. Articles were categorized into 20 topics, ranging from Access to Hospice and Utilization (42 articles) to Community Outreach and Services (three articles). Three-quarters (76.3%) of the included studies provided evidence that racial disparities exist in serious illness care, while less than one-quarter examined causes of disparities. The most common Model levels were the Health Care System (102 articles) and Individual (71 articles) levels.
CONCLUSION
More articles focused on establishing evidence of disparities between Black and White patients than on understanding their root causes. Further investigation is warranted to understand how factors at the patient, provider, health system, and society levels interact to remediate disparities.
Topics: Humans; United States; Delivery of Health Care; Hospice Care; Racial Groups
PubMed: 37442530
DOI: 10.1016/j.jpainsymman.2023.07.002 -
The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review.Palliative Medicine Jun 2024People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice... (Review)
Review
BACKGROUND
People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice lines to ensure 24/7 access to support. However, the impact of these services on patient and carer outcomes, as well as the health care system, remains poorly understood.
AIM
To evaluate the clinical- and cost-effectiveness of out-of-hours palliative care telephone advice lines, and to identify service characteristics associated with effectiveness.
DESIGN
Rapid systematic review (PROSPERO ID: CRD42023400370) with narrative synthesis.
DATA SOURCES
Three databases (Medline, EMBASE and CINAHL) were searched in February 2023 for studies of any design reporting on telephone advice lines with at least partial out-of-hours availability. Study quality was assessed using the Mixed Methods Appraisal Tool, and quantitative and qualitative data were synthesised narratively.
RESULTS
Twenty-one studies, published 2000-2022, were included. Most studies were observational, none were experimental. While some evidence suggested that telephone advice lines offer guidance and reassurance, supporting care at home and potentially reducing avoidable emergency care use in the last months of life, variability in reporting and poor methodological quality across studies limit our understanding of patient/carer and health care system outcomes.
CONCLUSION
Despite their increasing use, evidence for the clinical- and cost-effectiveness of palliative care telephone advice lines remains limited, primarily due to the lack of robust comparative studies. There is a need for more rigorous evaluations incorporating experimental or quasi-experimental methods and longer follow-up, and standardised reporting of telephone advice line models and outcomes, to guide policy and practice.
Topics: Humans; After-Hours Care; Palliative Care; Telephone; Cost-Benefit Analysis; Hotlines
PubMed: 38708864
DOI: 10.1177/02692163241248544 -
Frontiers in Medicine 2024To determine the experiences and needs of palliative care in patients with advanced Parkinson's disease (PD).
AIM
To determine the experiences and needs of palliative care in patients with advanced Parkinson's disease (PD).
METHODS
A scoping literature review methodology, as described by the Joanna Briggs Institute, was employed to search for relevant literature. An electronic search of studies published in English was conducted across five databases from inception to 10 September 2023.
RESULTS
The search yielded a total of 1,205 articles, with 20 meeting the inclusion criteria. The findings were organized into four themes: (1) unmet emotional and informational needs; (2) needs for effective coordination of care; (3) planning for the future; and (4) symptom management. This scoping review highlights the intricate nature of palliative care for patients with PD and sheds light on issues within current palliative care healthcare systems. The findings emphasize the necessity for individualized interventions and services to address the diverse unmet palliative care needs of people with PD.
CONCLUSION
The study reveals the complex landscape of palliative care for individuals with advanced PD, emphasizing the inadequacies within existing healthcare systems. The identified themes underscore the importance of tailored interventions to address the varied unmet palliative care needs of this population.
PubMed: 38660425
DOI: 10.3389/fmed.2024.1362828 -
Patient Education and Counseling Nov 2023The objective was to identify candidate patient reported outcomes with potential to inform individual patient care and service development for inclusion in a digital... (Review)
Review
Which diabetes specific patient reported outcomes should be measured in routine care? A systematic review to inform a core outcome set for adults with Type 1 and 2 diabetes mellitus: The European Health Outcomes Observatory (H2O) programme.
OBJECTIVES
The objective was to identify candidate patient reported outcomes with potential to inform individual patient care and service development for inclusion in a digital outcome set to be collected in routine care, as part of an international project to enhance care outcomes for people with diabetes.
METHODS
PubMed, COSMIN and COMET databases were searched. Published studies were included if they recommended patient reported outcomes that were clinically useful and/or important to people with diabetes. To aid selection decisions, recommended outcomes were considered in terms of the evidence endorsing them and their importance to people with diabetes.
RESULTS
Twenty-seven studies recommending 53 diabetes specific outcomes, and patient reported outcome measures, were included. The outcomes reflected the experience of living with diabetes (e.g. psychological well-being, symptom experience, health beliefs and stigma) and behaviours (e.g. self-management). Diabetes distress and self-management behaviours were most endorsed by the evidence.
CONCLUSIONS
The review provides a comprehensive list of candidate outcomes endorsed by international evidence and informed by existing outcome sets, and suggestions for measures.
PRACTICE IMPLICATIONS
The review offers evidence to guide clinical application. Integrated measurement of these outcomes in care settings holds enormous potential to improve provision of care and outcomes in diabetes.
Topics: Humans; Adult; Diabetes Mellitus, Type 1; Diabetes Mellitus, Type 2; Outcome Assessment, Health Care
PubMed: 37672919
DOI: 10.1016/j.pec.2023.107933 -
BMC Palliative Care Jan 2024Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety... (Review)
Review
BACKGROUND
Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients' ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs).
METHODS
This review was conducted following the framework of Arksey and O'Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies' eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise.
RESULTS
This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a 'life buoy' to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies.
CONCLUSIONS
There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients.
Topics: Humans; Palliative Care; Noninvasive Ventilation; Respiration, Artificial; Dyspnea; Pulmonary Disease, Chronic Obstructive
PubMed: 38287312
DOI: 10.1186/s12904-024-01365-y -
BMC Pediatrics Aug 2023Children in acute pain often receive inadequate pain relief, partly from difficulties administering injectable analgesics. A rapid-acting, intranasal (IN) analgesic may... (Meta-Analysis)
Meta-Analysis
BACKGROUND
Children in acute pain often receive inadequate pain relief, partly from difficulties administering injectable analgesics. A rapid-acting, intranasal (IN) analgesic may be an alternative to other parenteral routes of administration. Our review compares the efficacy, safety, and acceptability of intranasal analgesia to intravenous (IV) and intramuscular (IM) administration; and to compare different intranasal agents.
METHODS
We searched Cochrane Library, MEDLINE/PubMed, Embase, Web of Knowledge, Clinicaltrials.gov, Controlled-trials.com/mrcr, Clinicaltrialsregister.eu, Apps.who.int/trialsearch. We also screened reference lists of included trials and relevant systematic reviews. Studies in English from any year were included. Two authors independently assessed all studies. We included randomised trials (RCTs) of children 0-16, with moderate to severe pain; comparing intranasal analgesia to intravenous or intramuscular analgesia, or to other intranasal agents. We excluded studies of procedural sedation or analgesia. We extracted study characteristics and outcome data and assessed risk of bias with the ROB 2.0-tool. We conducted meta-analysis and narrative review, evaluating the certainty of evidence using GRADE. Outcomes included pain reduction, adverse events, acceptability, rescue medication, ease of and time to administration.
RESULTS
We included 12 RCTs with a total of 1163 children aged 3 to 20, most below 10 years old, with a variety of conditions. Our review shows that: - There may be little or no difference in pain relief (single dose IN vs IV fentanyl MD 4 mm, 95% CI -8 to 16 at 30 min by 100 mm VAS; multiple doses IN vs IV fentanyl MD 0, 95%CI -0.35 to 0.35 at 15 min by Hannallah score; single dose IN vs IV ketorolac MD 0.8, 95% CI -0.4 to 1.9 by Faces Pain Scale-Revised), adverse events (single dose IN vs IV fentanyl RR 3.09, 95% CI 0.34 to 28.28; multiple doses IN vs IV fentanyl RR 1.50, 95%CI 0.29 to 7.81); single dose IN vs IV ketorolac RR 0.716, 95% CI 0.23 to 2.26), or acceptability (single dose IN vs IV ketorolac RR 0.83, 95% CI 0.66 to 1.04) between intranasal and intravenous analgesia (low certainty evidence). - Intranasal diamorphine or fentanyl probably give similar pain relief to intramuscular morphine (narrative review), and are probably more acceptable (RR 1.60, 95% CI 1.42 to 1.81) and tolerated better (RR 0.061, 95% CI 0.03 to 0.13 for uncooperative/negative reaction) (moderate certainty); adverse events may be similar (narrative review) (low certainty). - Intranasal ketamine gives similar pain relief to intranasal fentanyl (SMD 0.05, 95% CI -0.20 to 0.29 at 30 min), while having a higher risk of light sedation (RR 1.74, 95% CI 1.30 to 2.35) and mild side effects (RR 2.16, 95% CI 1.72 to 2.71) (high certainty). Need for rescue analgesia is probably similar (RR 0.85, 95% CI 0.62 to 1.17) (moderate certainty), and acceptability may be similar (RR 1.15, 95% CI 0.89 to 1.48) (low certainty).
CONCLUSIONS
Our review suggests that intranasal analgesics are probably a good alternative to intramuscular analgesics in children with acute moderate to severe pain; and may be an alternative to intravenous administration. Intranasal ketamine gives similar pain relief to fentanyl, but causes more sedation, which should inform the choice of intranasal agent.
Topics: Child; Humans; Ketorolac; Ketamine; Pain; Analgesia; Fentanyl
PubMed: 37596559
DOI: 10.1186/s12887-023-04203-x -
BMC Palliative Care Oct 2023Oesophago-gastric cancer is an aggressive disease with a high rate of recurrence and mortality across the disease trajectory. Reduced psychosocial functioning has been... (Review)
Review
BACKGROUND
Oesophago-gastric cancer is an aggressive disease with a high rate of recurrence and mortality across the disease trajectory. Reduced psychosocial functioning has been evidenced amongst those with advanced disease, however little is known about the contributing factors. Determining these factors is an important clinical consideration to inform assessment and intervention. This review aimed to synthesise the available evidence on the psychosocial functioning of individuals with advanced oesophago-gastric cancer and their carers.
METHODS
A JBI mixed-methods systematic review. Four bibliographic databases, MEDLINE, Embase, PsycINFO, and CINAHL, were searched. Quantitative and qualitative studies were screened for inclusion and critically appraised for methodological quality. Both types of data were extracted using JBI tools for mixed-methods systematic reviews. A convergent segregated approach to synthesis and integration was used. The findings of the synthesis have been configured according to JBI methodology.
RESULTS
A total of 12 studies were included in this review, including 6 quantitative studies and 6 qualitative studies. The quantitative results provide preliminary indication of several physical, biological, psychological and macro-level contextual factors associated with psychosocial functioning in this clinical population. The qualitative findings shed light on a range of physical, psychosocial, and existential challenges faced by advanced oesophago-gastric cancer patients. These multiple and often persistent challenges appear to cause considerable distress; however, patients describe the importance of maintaining a sense of normality and control over their illness and its effects. Patients value continuity and structure, however many report shortcomings when accessing care. No findings reporting the experiences from the perspective of carers were found, therefore all findings represent the perspective of the patient.
CONCLUSIONS
Further high-quality research is needed to understand how best to support and manage the palliative care needs of individuals living with advanced oesophago-gastric cancer. Implications for practice are discussed, suggesting that psychosocial interventions, complex symptom management and continuity of care could improve the psychosocial functioning of individuals in this setting.
PRE-REGISTRATION
The systematic review was pre-registered at the International Prospective Register of Systematic Reviews (PROSPERO; CRD42020181273) and the protocol can be viewed on the OSF ( http://osf.io/exuzf ).
Topics: Humans; Hospice and Palliative Care Nursing; Palliative Care; Psychosocial Functioning; Stomach Neoplasms
PubMed: 37891568
DOI: 10.1186/s12904-023-01288-0