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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 -
Alzheimer's Research & Therapy Apr 2024Dementia has a significant impact on the social, physical, and psychological wellbeing of people living with dementia, their families and society. Animal-assisted... (Review)
Review
BACKGROUND
Dementia has a significant impact on the social, physical, and psychological wellbeing of people living with dementia, their families and society. Animal-assisted interventions can have positive effects on the health and wellbeing of people living with dementia. Equine-assisted services are animal-assisted non-pharmacological interventions which have improved the health and wellbeing of diverse populations. The impact of participating in equine-assisted services on the health and wellbeing of people with dementia is unclear. A systematic review was conducted to synthesise evidence investigating the effects of participating in equine-assisted services on the health and wellbeing of people living with dementia.
DESIGN
Systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.
METHODS
The databases CINAHL, EMBASE, MEDLINE, and Web of Science were searched for any research published prior to 14 June 2023. Peer-reviewed publications in the English language utilizing methods deriving quantitative and/or qualitative data were eligible. Methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool. Findings from studies were synthesised using a deductive approach.
RESULTS
Of the 223 articles screened, six met the inclusion criteria: four quantitative and two qualitative studies. The six studies represent four separate equine interventions. Studies were of moderate to strong quality. Participants were people living with dementia (n = 44, mean age range 70-83 years), dementia care partners (n = 5, mean age 58), and equine-assisted services providers (n = 5). Interventions varied in duration, activities conducted, outcomes measured, and measurement tools used. Studies found a favourable impact of participating in equine-assisted services on the neuropsychiatric symptoms and quality of life of people living with dementia. Participating in equine-assisted services improved well-being, functional abilities, social participation, and communication, while also having a positive effect on social, emotional, and behavioural outcomes, and physical health.
CONCLUSIONS
The limited but high-quality literature investigating the impact of equine-assisted services among people living with dementia suggests that equine-assisted services can have a positive impact on the health and wellbeing of people living with dementia. Additional robust studies contributing to the evidence base are warranted; such studies can support the development of programs and further elucidate the impact of participation.
Topics: Humans; Animals; Horses; Aged; Aged, 80 and over; Middle Aged; Quality of Life; Activities of Daily Living; Dementia
PubMed: 38589888
DOI: 10.1186/s13195-024-01453-4 -
Current Oncology Reports May 2024Patient navigation promotes access to timely treatment of chronic diseases by eliminating barriers to care. Patient navigation programs have been well-established in... (Review)
Review
PURPOSE OF REVIEW
Patient navigation promotes access to timely treatment of chronic diseases by eliminating barriers to care. Patient navigation programs have been well-established in improving screening rates and diagnostic resolution. This systematic review aimed to characterize the multifaceted role of patient navigators within the realm of cancer treatment.
RECENT FINDINGS
A comprehensive electronic literature review of PubMed and Embase databases was conducted to identify relevant studies investigating the role of patient navigators in cancer treatment from August 1, 2009 to March 27, 2023. Fifty-nine articles were included in this review. Amongst studies focused on cancer treatment initiation, 70% found a significant improvement in treatment initiation amongst patients who were enrolled in patient navigation programs, 71% of studies focused on treatment adherence demonstrated significant improvements in treatment adherence, 87% of studies investigating patient satisfaction showed significant benefits, and 81% of studies reported a positive impact of patient navigators on quality care indicators. Three palliative care studies found beneficial effects of patient navigation. Thirty-seven studies investigated disadvantaged populations, with 76% of them concluded that patient navigators made a positive impact during treatment. This systematic review provides compelling evidence supporting the value of patient navigation programs in cancer treatment. The findings suggest that patient navigation plays a crucial role in improving access to care and optimizing treatment outcomes, especially for disadvantaged cancer patients. Incorporating patient navigation into standard oncology practice can reduce disparities and improve the overall quality of cancer care.
Topics: Humans; Patient Navigation; Neoplasms; Health Services Accessibility; Patient Satisfaction
PubMed: 38581470
DOI: 10.1007/s11912-024-01514-9 -
BMC Health Services Research Apr 2024Providing individualised healthcare in line with patient wishes is a particular challenge for emergency healthcare professionals. Documentation of patient wishes (DPW),...
BACKGROUND
Providing individualised healthcare in line with patient wishes is a particular challenge for emergency healthcare professionals. Documentation of patient wishes (DPW), e.g. as advance directives, can guide clinicians in making end-of-life decisions that respect the patient's wishes and autonomy. However, patient centered decisions are hindered by limited availability of DPWs in emergency settings.
OBJECTIVE
This systematic review aims to congregate present data on recorded rates for DPW existence and availability in the emergency department (ED) as well as contributing factors for these rates.
METHODS
We searched MEDLINE, Google Scholar, Embase and Web of Science databases in September 2023. Publications providing primary quantitative data on DPW in the ED were assessed. Publications referring only to a subset of ED patients (other than geriatric) and investigating DPW issued after admission were excluded.
RESULTS
A total of 22 studies from 1996 to 2021 were included in the analysis. Most were from the US (n = 12), followed by Australia (n = 4), Canada (n = 2), South Korea, Germany, the United Kingdom and Switzerland (n = 1 each). In the general adult population presenting to the ED, 19.9-27.8% of patients reported having some form of DPW, but only in 6.8% or less it was available on presentation. In the geriatric population, DPW rates (2.6-79%) as well as their availability (1.1-48.8%) varied widely. The following variables were identified as positive predictors of having DPW, among others: higher age, poorer overall health, as well as sociodemographic factors, such as female gender, having children, being in a relationship, higher level of education or a recent previous presentation to hospital.
CONCLUSIONS
Existence and availability of a recorded DPW among ED patients was low in general and even in geriatric populations mostly well below 50%. While we were able to gather data on prevalence and predictors, this was limited by heterogeneous data. We believe further research is needed to explore the quality of DPW and measures to increase both rates of existence and availability of DPW in the ED.
Topics: Aged; Adult; Child; Humans; Female; Advance Directives; Emergency Service, Hospital; Hospitalization; Health Personnel; Decision Making
PubMed: 38570808
DOI: 10.1186/s12913-024-10819-1 -
Journal of Cachexia, Sarcopenia and... Jun 2024Low skeletal muscle mass (LSMM) and/or, function associated with an increased risk of treatment-related toxicities and inferior overall survival (OS) among adults with... (Meta-Analysis)
Meta-Analysis
BACKGROUND
Low skeletal muscle mass (LSMM) and/or, function associated with an increased risk of treatment-related toxicities and inferior overall survival (OS) among adults with solid malignancies. However, the association between LSMM and treatment-related toxicities among adults with haematologic malignancies remains unclear.
METHODS
Using a pre-published protocol (CRD42020197814), we searched seven bibliographic databases from inception to 08/2021 for studies reporting the impact of LSMM among adults ≥18 years with a known haematologic malignancy. The primary outcome of interest was OS, and secondary outcomes included progression free survival (PFS) and non-relapse mortality (NRM). These effect sizes were quantified in terms of hazards ratio (HR) along with 95% confidence interval (CI) and pooled across studies using a DerSimonian-Laird random-effects model. Heterogeneity was assessed using the Cochran's Q and the I statistic. All hypothesis testing was two-sided with an alpha of 0.05.
RESULTS
Of 3791 studies screened, we identified 20 studies involving 3468 patients with a mean age of 60 years; 44% were female and the most common malignancy was diffuse large B-cell lymphoma (42%). Most studies measured muscle mass using single slice computed tomography imaging at the L3 level. The presence of LSMM was associated with worse OS (pooled HR = 1.81, 95% CI = 1.48-2.22, P < 0.001) with moderate heterogeneity (Cochran's Q, I = 60.4%), PFS (pooled HR = 1.61, 95% CI = 1.28-2.02, P < 0.001) with moderate heterogeneity (Cochran's Q, I = 66.0%). Similarly, LSMM was associated with worse NRM (HR = 1.72, 95% CI = 1.34-2.22, P < 0.001) with little evidence of heterogeneity (Cochran's Q, I = 0.0%).
CONCLUSIONS
LSMM is associated with worse survival outcomes among adults with haematologic malignancies. Further research into understanding the underlying mechanism of this association and mitigating the negative effects of LSMM among adults with haematologic malignancies is needed.
Topics: Humans; Hematologic Neoplasms; Muscle, Skeletal; Treatment Outcome; Adult; Middle Aged; Female; Male
PubMed: 38558541
DOI: 10.1002/jcsm.13446 -
BMJ Supportive & Palliative Care Jan 2024Parenteral nutrition (PN) and palliative venting gastrostomies (PVG) are two interventions used clinically to manage inoperable malignant bowel obstruction (MBO);...
BACKGROUND
Parenteral nutrition (PN) and palliative venting gastrostomies (PVG) are two interventions used clinically to manage inoperable malignant bowel obstruction (MBO); however, little is known about their role in clinical and quality-of-life outcomes to inform clinical decision making.
AIM
To examine the impact of PN and PVG on clinical and quality-of-life outcomes in inoperable MBO.
DESIGN
A mixed-methods systematic review and narrative synthesis.
DATA SOURCES
The following databases were searched (from inception to 29 April 2021): MEDLINE, Embase, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Bielefeld Academic Search Engine, Health Technology Assessment and CareSearch for qualitative or quantitative studies of MBO, and PN or PVG. Titles, abstracts and papers were independently screened and quality appraised.
RESULTS
A total of 47 studies representing 3538 participants were included. Current evidence cannot tell us whether these interventions improve MBO survival, but this was a firm belief by patients and clinicians informing their decision. Both interventions appear to allow patients valuable time at home. PVG provides relief from nausea and vomiting. Both interventions improve quality of life but not without significant burdens. Nutritional and performance status may be maintained or improved with PN.
CONCLUSION
PN and PVG seem to allow valuable time at home. We found no conclusive evidence to show either intervention prolonged survival, due to the lack of randomised controlled trials that have to date not been performed due to concerns about equipoise. Well-designed studies regarding survival for both interventions are needed.
PROSPERO REGISTRATION NUMBER
CRD42020164170.
Topics: Humans; Quality of Life; Intestinal Obstruction; Gastrostomy; Databases, Factual
PubMed: 38557409
DOI: 10.1136/bmjspcare-2021-003492 -
Journal of Palliative Care Apr 2024The Serious Illness Care Program was developed to support goals and values discussions between seriously ill patients and their clinicians. The , that is, the essential... (Review)
Review
The Serious Illness Care Program was developed to support goals and values discussions between seriously ill patients and their clinicians. The , that is, the essential clinical conversation skills that are described as requisite for effective serious illness conversations (SICs) in practice, have not yet been explicated. This integrative systematic review aimed to identify core competencies for SICs in the context of the Serious Illness Care Program. Articles published between January 2014 and March 2023 were identified in MEDLINE, PsycINFO, CINAHL, and PubMed databases. In total, 313 records underwent title and abstract screening, and 96 full-text articles were assessed for eligibility. The articles were critically appraised using the Joanna Briggs Institute Critical Appraisal Guidelines, and data were analyzed using thematic synthesis. In total, 53 articles were included. Clinicians' core competencies for SICs were described in 3 themes: conversation resources, intrapersonal capabilities, and interpersonal capabilities. Conversation resources included using the conversation guide as a tool, together with applying appropriate communication skills to support better communication. Intrapersonal capabilities included calibrating one's own attitudes and mindset as well as confidence and self-assurance to engage in SICs. Interpersonal capabilities focused on the clinician's ability to interact with patients and family members to foster a mutually trusting relationship, including empathetic communication with attention and adherence to patient and family members views, goals, needs, and preferences. Clinicians need to efficiently combine conversation resources with intrapersonal and interpersonal skills to successfully conduct and interact in SICs.
PubMed: 38557369
DOI: 10.1177/08258597241245022 -
Journal of Cachexia, Sarcopenia and... Jun 2024The use of patient-reported outcomes (PROMs) of quality of life (QOL) is common in cachexia trials. Patients' self-report on health, functioning, wellbeing, and... (Review)
Review
The use of patient-reported outcomes (PROMs) of quality of life (QOL) is common in cachexia trials. Patients' self-report on health, functioning, wellbeing, and perceptions of care, represent important measures of efficacy. This review describes the frequency, variety, and reporting of QOL endpoints used in cancer cachexia clinical trials. Electronic literature searches were performed in Medline, Embase, and Cochrane (1990-2023). Seven thousand four hundred thirty-five papers were retained for evaluation. Eligibility criteria included QOL as a study endpoint using validated measures, controlled design, adults (>18 years), ≥40 participants randomized, and intervention exceeding 2 weeks. The Covidence software was used for review procedures and data extractions. Four independent authors screened all records for consensus. Papers were screened by titles and abstracts, prior to full-text reading. PRISMA guidance for systematic reviews was followed. The protocol was prospectively registered via PROSPERO (CRD42022276710). Fifty papers focused on QOL. Twenty-four (48%) were double-blind randomized controlled trials. Sample sizes varied considerably (n = 42 to 469). Thirty-nine trials (78%) included multiple cancer types. Twenty-seven trials (54%) featured multimodal interventions with various drugs and dietary supplements, 11 (22%) used nutritional interventions alone and 12 (24%) used a single pharmacological intervention only. The median duration of the interventions was 12 weeks (4-96). The most frequent QOL measure was the EORTC QLQ-C30 (60%), followed by different FACIT questionnaires (34%). QOL was a primary, secondary, or exploratory endpoint in 15, 31 and 4 trials respectively, being the single primary in six. Statistically significant results on one or more QOL items favouring the intervention group were found in 18 trials. Eleven of these used a complete multidimensional measure. Adjustments for multiple testing when using multicomponent QOL measures were not reported. Nine trials (18%) defined a statistically or clinically significant difference for QOL, five with QOL as a primary outcome, and four with QOL as a secondary outcome. Correlation statistics with other study outcomes were rarely performed. PROMs including QOL are important endpoints in cachexia trials. We recommend using well-validated QOL measures, including cachexia-specific items such as weight history, appetite loss, and nutritional intake. Appropriate statistical methods with definitions of clinical significance, adjustment for multiple testing and few co-primary endpoints are encouraged, as is an understanding of how interventions may relate to changes in QOL endpoints. A strategic and scientific-based approach to PROM research in cachexia trials is warranted, to improve the research base in this field and avoid the use of QOL as supplementary measures.
Topics: Humans; Cachexia; Quality of Life; Neoplasms; Clinical Trials as Topic; Patient Reported Outcome Measures
PubMed: 38553255
DOI: 10.1002/jcsm.13453 -
EClinicalMedicine May 2024Aggressive care near patients' end-of-life (EOL) entails limited therapeutic values, high costs, and compromised quality of life (QoL). In this study, we aimed to...
BACKGROUND
Aggressive care near patients' end-of-life (EOL) entails limited therapeutic values, high costs, and compromised quality of life (QoL). In this study, we aimed to estimate the global prevalence of aggressive care in patients with cancer and explore potential subgroup differences.
METHODS
We searched PubMed, Embase, and the Cochrane Library from database inception to Feb 16, 2024. Eligible studies reported the prevalence of aggressive EOL care using at least one quantifiable measure. Random-effects models were used to derive the pooled prevalence and subgroup analyses were performed to investigate differences in the prevalence of aggressive care across regions, the country's level of economic development, tumor types, ages, and sample sizes. This review is registered with PROSPERO, number CRD42023467839.
FINDINGS
A total of 129 studies were included in this systematic review, of which 118 (91.5%) were from high-income countries. Studies were mostly conducted in the Americas (60, 46.5%), Europe (34, 26.4%), and Western Pacific (31, 24.0%). Measures of aggressive care were inconsistent across studies, with the most commonly used measure being the use of chemotherapy in the last 14 days of life (DOLs) (n = 87, 67.4%) and intensive care unit (ICU) stay in the last 30 DOLs (n = 87, 67.4%). The prevalence of the five claims-based measures of aggressive care, i.e., chemotherapy in the last 14 DOLs, ICU stay in the last 30 DOLs, repeated hospital admission in the last 30 DOLs, repeated emergency room (ER) visit in the last 30 DOLs, and hospice care <3 days before death were 11.6% (95% CI, 9.8%-13.4%), 14.4% (95% CI, 11.8%-17.0%), 17.9% (95% CI, 14.4%-21.4%), 14.8% (95% CI, 12.0%-17.6%), and 14.4% (95% CI, 11.2%-17.6%), respectively. Regional differences were statistically significant in the prevalence of ICU stay and repeated hospital admission in the last 30 DOLs (p < 0.01; p = 0.03). Patients with hematologic malignancies were more likely to receive aggressive care than those with solid tumors, as seen in their higher rates of chemotherapy in the last 14 DOLs (21.7% versus 11.6%; p = 0.03), ICU stay in the last 30 DOLs (25.5% versus 10.8%; p < 0.01), and hospice care <3 days before death (26.7% versus 14.2%; p < 0.01). In addition, the prevalence of chemotherapy in the last 14 DOLs (26.2%; p < 0.01) and repeated hospital admission in the last 30 DOLs (31.4%; p < 0.01) were highest among pediatric patients with cancer.
INTERPRETATION
This meta-analysis found that aggressive EOL care was common in patients with cancer, regardless of the definition used, and varied by regions and populations. It is necessary to be aware of the global burden of aggressive care for patients with cancer near their EOL and take prompt action to address it.
FUNDING
National Natural Science Foundation of China (Grant No. 72274004).
PubMed: 38549585
DOI: 10.1016/j.eclinm.2024.102561 -
BMC Palliative Care Mar 2024So far, there have been many studies on end-of-life nursing care education around the world, and in many cases, according to the cultural, social, and spiritual contexts... (Review)
Review
BACKGROUND
So far, there have been many studies on end-of-life nursing care education around the world, and in many cases, according to the cultural, social, and spiritual contexts of each country, the results have been different. The present study intends to gain general insight into the main components of end-of-life care in nursing education programs by reviewing scientific texts and the results of investigations.
METHODS
This study was a scoping review conducted with the Arksey and O'Malley methodology updated by Peters et al. First, a search was made in Wos, ProQuest, Scopus, PubMed, Science Direct, Research Gate, and Google Scholar databases to find studies about end-of-life care education programs. Then, the screening of the found studies was done in four stages, and the final articles were selected based on the inclusion and exclusion criteria of the studies. Due to the nature of the research, editorials, letters, and commentaries were excluded. The screening steps are shown in the PRISMA-ScR diagram.
RESULTS
23 articles related to end-of-life care education programs were reviewed. The studies included eleven descriptive and cross-sectional studies, two qualitative studies, eight interventional studies, one concept analysis article, and one longitudinal study. By summarizing the data from the studies, six themes were obtained as the main components of end-of-life care education: principles of end-of-life care, communication skills, physical considerations, psychosocial and spiritual considerations, ethical considerations, and after-death care.
CONCLUSION
End-of-life care is one of the most challenging nursing care in the world. Since many nurses are not prepared to provide such care, the information obtained from this review can help nursing education and treatment managers develop more comprehensive training programs to improve the quality of end-of-life care.
Topics: Humans; Cross-Sectional Studies; Longitudinal Studies; Terminal Care; Education, Nursing; Clinical Competence
PubMed: 38549106
DOI: 10.1186/s12904-024-01398-3