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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 -
Annals of Palliative Medicine May 2023Establishing appropriate quality assessment indicators for palliative care in intensive care units (ICUs) is vital. This systematic review summarizes the existing...
BACKGROUND
Establishing appropriate quality assessment indicators for palliative care in intensive care units (ICUs) is vital. This systematic review summarizes the existing quality indicators (QIs) for palliative care in ICUs. It assesses the methodological quality of QI development to pave the way for more valid QIs.
METHODS
A literature search was conducted using MEDLINE, PsycINFO, CINAHL, Cochrane databases, and the Ichushi-web database for Japanese literature for all studies published until November 2021. The included QIs were drawn from the National Consensus Project for Quality Palliative Care (NCP) and the Donabedian model of quality. Methodological quality was assessed based on the appraisal of indicators through the research and evaluation tool.
RESULTS
Five studies were included, from which 109 indicators were extracted: 78% were process indicators, 5% were outcome indicators, and 17% were structure indicators. The most common indicators addressed the palliative care domain of "ethical and legal aspects of care" (n=38, 30%). Another distinctive feature of some indicators was a focus on supporting ICU staff. Regarding methodological quality, the "scientific evidence" varied (11-89%). Most of the data on QI measures and data sources were obtained from a review of electronic medical records (EMRs). Administrative data also provided a few measurable indicators.
CONCLUSIONS
Out of all the QIs covered in this review, most were process indicators, and only a few were outcome indicators. Ethical and legal aspects of care and support for the ICU staff emerged as unique to palliative care. Although the existing QIs can be used for palliative care in ICUs, more specific indicators are urgently needed. Continuous quality assessment and improvement, as well as the addition of more palliative care practices in ICUs, would provide further evidence and help develop valid QIs.
Topics: Humans; Palliative Care; Quality Indicators, Health Care; Quality of Health Care; Intensive Care Units; Outcome and Process Assessment, Health Care
PubMed: 37038065
DOI: 10.21037/apm-22-1005 -
Palliative Medicine Jan 2024People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care.... (Review)
Review
BACKGROUND
People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered.
AIM
The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers.
DESIGN
A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care.
DATA SOURCES
Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care.
RESULTS
A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early.
CONCLUSIONS
Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers.
Topics: Humans; Palliative Care; Parkinson Disease; Caregivers; Quality of Life; Advance Care Planning
PubMed: 38054428
DOI: 10.1177/02692163231214408 -
Cancers Jun 2021Glioblastoma (GBM) has a median overall survival of 16-21 months. As patients with GBM suffer concurrently from terminal cancer and a disease with progressive... (Review)
Review
Glioblastoma (GBM) has a median overall survival of 16-21 months. As patients with GBM suffer concurrently from terminal cancer and a disease with progressive neurocognitive decline, advance care planning (ACP) and palliative care (PC) are critical. We conducted a systematic review exploring published literature on the prevalence of ACP, end-of-life (EOL) services utilization (including PC services), and experiences among adults with GBM. We searched from database inception until 20 December 2020. Preferred reporting items for systematic reviews guidelines were followed. Included studies were assessed for quality using the Newcastle-Ottawa Scale. The 16 articles were all nonrandomized studies conducted in six countries with all but two published in 2014 or later. ACP documentation varied from 4-55%, PC referral was pursued in 39-40% of cases, and hospice referrals were made for 66-76% of patients. Hospitalizations frequently occurred at the EOL with 20-56% of patients spending over 25% of their overall survival time hospitalized. Many GBM patients do not pursue ACP or have access to PC. There is a dearth of focused and high-quality studies on ACP, PC, and hospice use among adults with GBM. Prospective studies that address these and additional aspects related to EOL care, such as healthcare costs and inpatient supportive care needs, are needed.
PubMed: 34201260
DOI: 10.3390/cancers13122867 -
The European Respiratory Journal Oct 2021Oxygen therapy is frequently prescribed for the palliation of breathlessness, despite lack of evidence for its effectiveness in people who are not hypoxaemic. This study...
Oxygen therapy is frequently prescribed for the palliation of breathlessness, despite lack of evidence for its effectiveness in people who are not hypoxaemic. This study aimed to compare and contrast patients', caregivers' and clinicians' experiences of palliative oxygen use for the relief of chronic breathlessness in people with advanced life-limiting illnesses, and how this shapes prescribing.A systematic review and meta-synthesis of qualitative data was conducted. MEDLINE, CINAHL and PsycINFO were searched for peer-reviewed studies in English (2000-April 2019) reporting perspectives on palliative oxygen use for reducing breathlessness in people with advanced illnesses in any healthcare setting. After data extraction, thematic synthesis used line-by-line coding of raw data (quotes) to generate descriptive and analytical themes.Of 457 articles identified, 22 met the inclusion criteria by reporting perspectives of patients (n=337), caregivers (n=91) or clinicians (n=616). Themes common to these perspectives were: 1) benefits and burdens of palliative oxygen use, 2) knowledge and perceptions of palliative oxygen use beyond the guidelines, and 3) longitudinal trajectories of palliative oxygen use.There are differing perceptions regarding the benefits and burdens of using palliative oxygen. Clinicians should be aware that oxygen use may generate differing goals of therapy for patients and caregivers. These perceptions should be taken into consideration when prescribing oxygen for the symptomatic relief of chronic breathlessness in patients who do not quality for long-term oxygen therapy.
Topics: Caregivers; Dyspnea; Humans; Oxygen; Oxygen Inhalation Therapy; Palliative Care
PubMed: 33653807
DOI: 10.1183/13993003.04613-2020 -
Medical Journal of the Islamic Republic... 2022With the increase in the population of cancer patients and the importance of reducing the economic burden of disease, it is very important to offer solutions that can... (Review)
Review
With the increase in the population of cancer patients and the importance of reducing the economic burden of disease, it is very important to offer solutions that can provide the services needed by this group of patients in the most appropriate way. In recent years, palliative care services have been provided in a wide range of countries for this purpose, and many studies have been conducted to assess its economic and clinical aspects. The current study aimed to systematically review economic evaluation studies that investigate the costs of end-of-life care for cancer patients. Electronic search was performed in multiple databases and different resources between 2000-2021 based on inclusion and exclusion criteria. Inclusion criteria were Studies consisting of a complete EE, including CEA, CUA, and CBA regarding the EE of palliative care for patients with cancer disease, EE studies carried out by decision analysis models following the EE approach, full-text articles in the English language, and published during 2000 and 2021 and According to our search strategy, the following articles were removed: studies conducted as a partial EE (like those intended to evaluate the effectiveness, cost evaluation, QoL evaluation), articles with poor methodological quality based on the CHEERS checklist, non-English studies, study protocols, articles presented to a conference, and letters to the editor. The quality of the articles was evaluated using a CHEERS checklist. 29 studies were included based on inclusion criteria. Most articles were published during the past decade. All studies were performed in high-income countries (UK= 6 studies, Canada= 5 studies). Most studies (n=7) focused on the health sector. Results of quality evaluation showed that 10 articles had excellent quality (score higher than 85%). Most studies (27 out of 29 studies) concluded that palliative medicine interventions were cost-effective and yielded positive cost-effectiveness results. 20 studies confidently concluded about the costs and benefits of providing palliative care services on cost-effectiveness and cost savings, and 2 studies made such a conclusion with uncertainty. Therefore, palliative care for cancer patients is cost-effective or cost-saving in 85% of studies. Although there are a wide variety of studies, characteristics, and quality of the final studies included in the present study, there are relatively favorable and stable patterns regarding the results. Palliative care is usually less expensive than comparator groups, and the cost difference is statistically significant in most cases, and this treatment is a relatively cost-effective option. However, making the right relevant decision and applying it as a dominant therapy approach in different countries requires further study in larger populations and over a longer period.
PubMed: 36569396
DOI: 10.47176/mjiri.36.141 -
Journal of Pain and Symptom Management Aug 2020Palliative care improves the quality of care and may reduce utilization, but delays or the absences of such services are common and costly in inpatient and emergency... (Review)
Review
CONTEXT
Palliative care improves the quality of care and may reduce utilization, but delays or the absences of such services are common and costly in inpatient and emergency department settings. Triggered palliative care consults (PCCs) offer one way to identify patients who would benefit from palliative care and to connect them with services early in their course. Consensus reports recommend use of triggers to identify patients for PCC, but no standards exist to guide trigger design or implementation.
OBJECTIVES
To conduct a systematic review of published trigger tools for PCC.
METHODS
Studies included quality improvement and prospective analyses of triggers for PCC for adults in the emergency department and inpatient settings since 2008. Paired reviewers evaluated the studies for inclusion criteria and extracted data related to study demographics, trigger processes, trigger criteria, and study bias.
RESULTS
The search yielded 5773 citations. Twenty studies were included for final analysis with more than 17,000 patients represented. Trigger processes and composition were heterogeneous, although frequently used categories, such as cancer, dementia, and chronic comorbidities, were identified. Three-quarters of the studies were deemed to have moderate or high risk of bias.
CONCLUSION
We present a range of trigger tools spanning different hospital settings and patient populations. Common themes in implementation and content arose, but the limitations of these studies are notable, and further rigorous randomized comparisons are needed to generate standards of care. In addition, future studies should focus on developing triggers that identify patients requiring primary-level vs. specialty-level palliative care.
Topics: Adult; Emergency Service, Hospital; Hospice and Palliative Care Nursing; Humans; Palliative Care; Prospective Studies; Referral and Consultation
PubMed: 32061721
DOI: 10.1016/j.jpainsymman.2020.02.001 -
Acta Medica Portuguesa Feb 2022Heart failure is a disease with survival estimates of around 10% after 10 years of the disease. Being a chronic and debilitatingillness, it is important to investigate...
INTRODUCTION
Heart failure is a disease with survival estimates of around 10% after 10 years of the disease. Being a chronic and debilitatingillness, it is important to investigate the potential efficacy of a palliative care approach for these patients. The aim of this study is to systematically review the efficacy of integrating palliative care in patients with advanced heart failure, including the outcomes overall quality of life and well-being, overall symptom burden and possible specific symptoms, hospital admission rates and mortality.
MATERIAL AND METHODS
The MEDLINE, Cochrane, EMBASE and CINAHL databases were searched for articles published between January 2010 and December 2020 about palliative care interventions in patients with heart failure. Clinical studies with humans with symptomatic heart failure were included, comparing the integration of palliative care with usual cardiac care.
RESULTS
The search protocol resulted in seven eligible studies for review and qualitative synthesis. The overall risk of bias within studies was moderate to high. Most studies demonstrated improvements with the integration of palliative care in terms of quality of life and reduction of admission rates. The evidence to support a significant improvement in overall symptom burden was not so robust among studies.
CONCLUSION
Palliative care interventions seem, overall, to be significantly effective in patients with heart failure. Future studies with more rigorous study designs are needed, in order, to further develop the role of palliative care in heart failure patients.
Topics: Bias; Heart Failure; Humans; Palliative Care; Quality of Life
PubMed: 35225776
DOI: 10.20344/amp.15963 -
Asian Pacific Journal of Cancer... Sep 2022The current study aims to review, appraise, and synthesize the available studies and recommend the significant clinical implications for healthcare professionals to... (Meta-Analysis)
Meta-Analysis
OBJECTIVE
The current study aims to review, appraise, and synthesize the available studies and recommend the significant clinical implications for healthcare professionals to understand the existing findings of palliative care experience among patients with hematology malignancy.
METHODS
After excluding the registered or ongoing systematic reviews in the PROSPERO database regarding the lived experience of palliative care among patients with HM, our systematic review and meta-analysis protocol was registered in PROSPERO [CRD42021270311]. A search for published articles in English between January 2000 and December 2020 was conducted among different electronic databases using PRISMA guidelines 2020. Meta-synthesis was accomplished using the JBI meta-aggregation method to synthesize the findings. The implemented approach involved all qualitative research and mixed-method studies that included a qualitative part.
RESULTS
This review contained eight studies which led to 25 codes and seven categories. Finally, three synthesized themes were developed: (1) Approaching the end of life among patients with Hematology Malignancy, (2) submission and surrender of patients with Hematology Malignancy during their terminal stage, and (3) Entrance to the palliative care world. Therefore, realizing the importance of palliative care services to patients with Hematology Malignancy by providing evidence-based education and timely referral is crucial.
CONCLUSION
There was a substantial increase in the HMs rate with late referral to palliative care services. The results of this review may draw attention to some issues reported by patients with Hematology Malignancy. Scaling up palliative care services for those patients is essential to minimize end-of-life suffering and the long-term impact of inadequate palliative care for patients with Hematology Malignancy.
Topics: Health Personnel; Hematologic Neoplasms; Humans; Neoplasms; Palliative Care; Qualitative Research
PubMed: 36172649
DOI: 10.31557/APJCP.2022.23.9.2881