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Journal of Medical Internet Research Sep 2021Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for... (Review)
Review
BACKGROUND
Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers.
OBJECTIVE
This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature.
METHODS
We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19).
RESULTS
In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults.
CONCLUSIONS
PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes.
Topics: Aged; Caregivers; Hospice Care; Humans; Palliative Care; Patient Portals; Terminal Care
PubMed: 34528888
DOI: 10.2196/28797 -
Journal of the American Medical... May 2020Despite recommendations to integrate palliative care into nursing home care, little is known about the most effective ways to meet this goal. (Review)
Review
BACKGROUND
Despite recommendations to integrate palliative care into nursing home care, little is known about the most effective ways to meet this goal.
OBJECTIVE
To examine the characteristics and effectiveness of nursing home interventions that incorporated multiple palliative care domains (eg, physical aspects of care-symptom management, and ethical aspects-advance care planning).
DESIGN
Systematic review.
METHODS
We searched MEDLINE via PubMed, Embase, CINAHL, and Cochrane Library's CENTRAL from inception through January 2019. We included all randomized and nonrandomized trials that compared palliative care to usual care and an active comparator. We assessed the type of intervention, outcomes, and the risk of bias.
RESULTS
We screened 1167 records for eligibility and included 13 articles. Most interventions focused on staff education and training strategies and on implementing a palliative care team. Many interventions integrated advance care planning initiatives into the intervention. We found that palliative care interventions in nursing homes may enhance palliative care practices, including processes to assess and manage pain and symptoms. However, inconsistent outcomes and high or unclear risk of bias among most studies requires results to be interpreted with caution.
CONCLUSIONS AND IMPLICATIONS
Heterogeneity in methodology, findings, and study bias within the existing literature revealed limited evidence for nursing home palliative care interventions. Findings from a small group of diverse clinical trials suggest that interventions enhanced nursing home palliative care and improved symptom assessment and management processes.
Topics: Advance Care Planning; Humans; Nursing Homes; Palliative Care; Symptom Assessment
PubMed: 31924556
DOI: 10.1016/j.jamda.2019.11.015 -
Revista Paulista de Pediatria : Orgao... 2022To perform a systematic review of the health economic evidence on the care of children and adolescents with complex clinical conditions, comparing groups included and...
OBJECTIVE
To perform a systematic review of the health economic evidence on the care of children and adolescents with complex clinical conditions, comparing groups included and not included (control group) in palliative care at the end of life.
DATA SOURCE
The seven databases searched were PubMed, Embase, Web of Science, Cochrane Library, Virtual Health Library-Latin American and Caribbean Health Sciences Literature (VHL-LILACS), EBSCOhost, and Paediatric Economic Database Evaluation, following recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement, from January 1979 to November 2020. The review included studies of patients under 18 years of age with complex clinical conditions that compared a palliative care group with a control group. The economic outcomes analyzed were length and place of stay at the end of life (home, hospice, ward, intensive care unit, emergency room), diagnostic and therapeutic procedures performed, and health-related costs. The exclusion criteria were: studies without a matched control group, conference/congress abstracts, letters to the editor, editorials, comments, qualitative studies, narrative reviews, studies with ten or fewer participants in each group, articles published in languages other than English, Portuguese, or Spanish.
DATA SYNTHESIS
Out of the 518 articles identified, 4 met the inclusion criteria. We found evidence of direct economic benefits, such as reduced health costs, indirect savings, and protection of patients from undergoing invasive procedures, surgeries, and costly therapies, which cause greater suffering at the end of life. Therefore, participating in a palliative care program saved financial and technological resources, besides increasing the frequency of deaths at home and improving the quality of life.
CONCLUSIONS
Public and private policies to promote palliative care represent better efficiency when allocating available health care resources.
Topics: Adolescent; Child; Cost-Benefit Analysis; Death; Humans; Palliative Care; Quality of Life
PubMed: 35019011
DOI: 10.1590/1984-0462/2022/40/2021002 -
Annals of Palliative Medicine Sep 2023The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal...
BACKGROUND
The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal experiences, and challenges the notion that disease precludes one from health care attention and interest. It seeks to normalise these phenomena and reorientate care to communities by activating naturally occurring networks and mobilising community resources. A surge of interventions aligned with the ethos of CC has been observed over the last decade. This scoping review seeks to synthesise what is currently known about the design, efficacy, and impact of CC interventions.
METHODS
Cochrane, PubMed, Scopus, and Web of Science were systematically searched. Hand searching was performed on three key journals, reference lists and citation lists of included articles, and relevant review articles. Two levels of analysis were conducted. First, a numerical presentation of the characteristics of CC interventions. Second, a thematically orientated narrative analysis of intervention efficacy.
RESULTS
A total of 1,882 records were screened; 62 papers were included. Most were implemented by palliative care organisations in Europe, North America, and Australia. Included studies were mapped against Clark et al.'s taxonomy of end-of-life interventions: educational (n=17); service (n=20); clinical (n=3); cultural (n=4); and multi-dimensional (n=18) interventions are discussed. While preliminary findings are positive, claims of efficacy are limited due to methodological paucity in the field.
CONCLUSIONS
We argue that the field would benefit from more transparent and theoretically driven CC interventions in order to explicate the mechanism(s) for successful intervention implementation.
Topics: Humans; Palliative Care; Australia; Europe
PubMed: 37475658
DOI: 10.21037/apm-22-867 -
Annals of Palliative Medicine Oct 2022People receiving palliative care have complex, wide-ranging, and changing needs, not just physical distress, but also psychosocial, practical, and spiritual. Influences...
BACKGROUND
People receiving palliative care have complex, wide-ranging, and changing needs, not just physical distress, but also psychosocial, practical, and spiritual. Influences on complexity in palliative care are different among healthcare providers and may depend on diverse aspects of the patient's condition, time, and environment. Therefore, this study aimed to integrate and describe the perspective of complexity in palliative care.
METHODS
We used an integrative review, which is a method of compiling, summarizing, and analyzing existing insights from previous studies. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO (EBSCOhost), Web of Science Core Collection, and CINAHL (EBSCOhost), examining literature from May 1972 to September 2020 and updated in December 2020. Subsequently, synthesis without meta-analysis of the findings was completed.
RESULTS
We identified 32 peer-reviewed articles published in English. The included literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We identified 29 that influenced complexity in palliative care, 25 perceptions of the patient, including background and physical, psychological, social, and spiritual; two perceptions in the healthcare setting; and two perceptions in the socio-cultural setting. Above all, the perceptions of complexity in palliative care included younger age, prognosis, and spirituality. In addition, we added the identified perceptions of complexity with references to the complexity model in palliative care.
CONCLUSIONS
Although this review was limited in its search strategy and some data sources may have been overlooked, it still provided perceptions that influenced complexity in palliative care. These complex influencing perceptions are necessary for patients to receive appropriate palliative care at the right time and for health care providers to conduct a multi-disciplinary team approach. Furthermore, longitudinal prospective data are needed to examine the changes and relationships among complexity over time.
Topics: Humans; Palliative Care; Prospective Studies; Hospice and Palliative Care Nursing; Qualitative Research; Spirituality
PubMed: 36226646
DOI: 10.21037/apm-22-623 -
NPJ Digital Medicine Apr 2021Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic... (Review)
Review
Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This meta-review applied a structured search of ten databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 publications. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described in studies within reviews. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making (13%), information provision or management (13%) and communication (9%). Across all reviews, mostly positive impacts were reported on education, information sharing, decision-making, communication and costs. Impacts on quality of life and physical and psychological symptoms were inconclusive. Applying AMSTAR 2 criteria, most reviews were judged as low quality as they lacked a protocol or did not consider risk of bias, so findings need to be interpreted with caution.
PubMed: 33824407
DOI: 10.1038/s41746-021-00430-7 -
Cureus Oct 2023Pancreatic cancer is a malignant tumor with one of the worst prognosis. Its incidence has been on the rise in recent years. First-line and second-line treatments as well... (Review)
Review
Pancreatic cancer is a malignant tumor with one of the worst prognosis. Its incidence has been on the rise in recent years. First-line and second-line treatments as well as adjuvant therapies have been employed in clinical trials for pancreatic cancer along with traditional chemotherapy and radiotherapy that has been enhanced. The prognosis of pancreatic ductal adenocarcinoma (PDAC) is still quite bad despite recent improvements in diagnostic and treatment methods. Since most patients are not candidates for treatment with a curative purpose, effective palliative care is crucial. For this systematic review, between December 25, 2022, and January 5, 2023, we searched PubMed, Medline, Cochrane, and Science Direct and discovered 225 relevant articles. The appropriateness of the literature abstracts for the pooled analysis was evaluated using different combinations of keywords such as pancreatic cancer, first- and second-line chemotherapy, palliative chemotherapy, gemcitabine and nab-paclitaxel (GnP), FOLFIRINOX (FFX), and fluorouracil. Eight research studies with a total of 15,236 people, including systematic reviews, meta-analyses, and randomized controlled trials (RCTs), were included. The only treatment of choice for patients without metastatic disease who have clinical staging that suggests resectable or borderline resectable pancreatic cancer (BRPC) should be resection. This research examined how first- and second-line chemotherapeutic regimens (using different drug combinations) affected patients with locally advanced pancreatic cancer (LAPC) or BRPC and how they responded in terms of overall survival (OS), tumor resectability, and progression-free interval. The review concludes by highlighting the results of these therapies. Notably, a growing body of research indicates that the two most popular first-line medication combinations GnP and FFX have similar results in RCTs and in real-world populations. Results of second-line therapy after first-line regime failure are still dismal, and there is still a great deal of doubt regarding the best course of action. More RCTs and real-world evidence studies that address current and innovative regimens, as well as the best order in which to administer them, are required, with a greater emphasis on targeted therapy with fewer side effects.
PubMed: 37937003
DOI: 10.7759/cureus.46630 -
Journal of Pain and Symptom Management Mar 2021There is rapidly increasing need for palliative care in Greater China because of rapidly aging populations. (Review)
Review
CONTEXT
There is rapidly increasing need for palliative care in Greater China because of rapidly aging populations.
OBJECTIVES
This study aimed to systematically review and appraise evidence for palliative care needs, models of care, interventions, and outcomes in Greater China.
METHODS
Four databases (MEDLINE, EMBASE, CINAHL, and PsycINFO) were searched, with hand searching of local journals and databases. Narrative synthesis was applied to the qualitative and quantitative evidence.
RESULTS
Nineteen qualitative studies and 47 quantitative studies were retained. With respect to care needs, nine themes were synthesized: pain control, reduced aggressive end-of-life care, truth telling, physical, emotional, and spiritual supports, and achieving preferred place of care/death. Informal caregivers expressed their needs for education and burden reduction. Health care professionals called for training and national policy support. Twenty-four studies evaluated interventions, mostly among patients with advanced cancer. Positive effects were suggested for improvements in quality of life, pain, anxiety and depression, readmission rate, and costs. Models of care evaluated were mostly specialist palliative care delivered in various settings (hospitals, residential care, and home). Outcome measures used were grouped into six categories of construct: quality of life, pain, physical assessment, psychospiritual assessment, quality of care, and implementation assessment. Limited rigorous randomized controlled trials are available to document intervention outcomes, and some problems (such as high attrition rates) reduced the strength of the evidence.
CONCLUSION
Palliative care services within Greater China should pay more attention to management of nonmalignant disease and to integration into primary services. Policy support is key to establishing culturally appropriate person-centered services.
Topics: Caregivers; China; Humans; Palliative Care; Quality of Life; Terminal Care
PubMed: 32916261
DOI: 10.1016/j.jpainsymman.2020.08.040 -
Palliative Medicine Jan 2023Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest... (Review)
Review
BACKGROUND
Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences.
AIM
This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses.
DESIGN
Scoping review. This review was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/SPTD7).
DATA SOURCES
Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design.
RESULTS
We identified 51 studies published between 2002 and 2021. Most studies were published in the United States ( = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews ( = 33). Three main topics were identified: Physical symptom burden ( = 26, 51%), Psychological and social needs ( = 33, 65%), and end-of-life care ( = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location.
CONCLUSION
The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.
Topics: Adolescent; Humans; Young Adult; Hospice Care; Palliative Care; Retrospective Studies; Systematic Reviews as Topic; Terminal Care; United States
PubMed: 36352490
DOI: 10.1177/02692163221136160 -
Open Heart Dec 2023(1) Develop a programme theory of why, for whom and in what contexts integrated palliative care (PC) and heart failure (HF) services work/do not work; (2) use the...
OBJECTIVES
(1) Develop a programme theory of why, for whom and in what contexts integrated palliative care (PC) and heart failure (HF) services work/do not work; (2) use the programme theory to co-produce with stakeholders, intervention strategies to inform best practice and future research.
METHODS
A systematic review of all published articles and grey literature using a realist logic of analysis. The search strategy combined terms significant to the review questions: HF, PC and end of life. Documents were included if they were in English and provided data relevant to integration of PC and HF services. Searches were conducted in November 2021 in EMBASE, MEDLINE, PsycINFO, AMED, HMIC and CINAHL. Further relevant documents were identified via monthly alerts (up until April 2023) and the project stakeholder group (patient/carers, content experts and multidisciplinary practitioners).
RESULTS
130 documents were included (86 research, 22 literature reviews, 22 grey literature). The programme theory identified intervention strategies most likely to support integration of PC and HF services. These included protected time for evidence-based PC and HF education from undergraduate/postgraduate level and continuing professional practice; choice of educational setting (eg, online, face-to-face or hybrid); increased awareness and seeing benefits of PC for HF management; conveying the emotive and intellectual need for integrating PC and HF via credible champions; and prioritising PC and HF guidelines in practice.
CONCLUSIONS
The review findings outline the required steps to take to increase the likelihood that all key players have the capacity, opportunity and motivation to integrate PC into HF management.
PROSPERO REGISTRATION NUMBER
CRD42021240185.
Topics: Humans; Palliative Care; Heart Failure
PubMed: 38097362
DOI: 10.1136/openhrt-2023-002438