Advance Care Planning in Neurodegenerative Disorders: A Scoping Review.
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ABSTRACT:
SUBMITTER: Giordano A
PROVIDER: S-EPMC8775509 | biostudies-literature | 2022 Jan
REPOSITORIES: biostudies-literature
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Advance Care Planning in Neurodegenerative Disorders: A Scoping Review.
Giordano Andrea A De Panfilis Ludovica L Perin Marta M Servidio Laura L Cascioli Marta M Grasso Maria Grazia MG Lugaresi Alessandra A Pucci Eugenio E Veronese Simone S Solari Alessandra A
International journal of environmental research and public health 20220112 2
Advance care planning (ACP) is increasingly acknowledged as a key step to enable patients to define their goals/preferences for future medical care, together with their carers and health professionals. We aimed to map the evidence on ACP in neurodegenerative disorders. We conducted a scoping review by searching PubMed (inception-December 28, 2020) in addition to trial, review, and dissertation registers. From 9367 records, we included 53 studies, mostly conducted in Europe (45%) and US-Canada (4 ...[more]
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Project description:To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for children/youth. The scoping review protocol was developed in accordance with the Joanna Briggs Institute methodology for scoping reviews, and was prospectively registered on the Open Science Framework. MEDLINE, Embase, CINAHL, the Web of Science Core Collection, and Google Scholar, as well as sources of unpublished studies and grey literature, were reviewed. Sixty-four articles met the criteria. Fifteen pACP documentation forms/tools were also identified. Overall, the included articles highlighted that pACP should be a structured, collaborative and iterative process between the family and a trusted or relevant healthcare provider, encompassing medical and non-medical issues. Few articles provided insights into specific elements recommended for advance directive forms. Identified strategies for implementation included a structured, step-by-step pACP interventional tool along with ongoing training, mentorship, and defined organizational structures for the clinician. No single specific ACP tool was acknowledged as the gold standard. Use of a pACP tool, along with ongoing provider education and communication skill development, standardized/accessible documentation, and system-wide quality improvement support, were noted as integral components of pACP.
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Project description:BACKGROUND:Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients' preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and-if appropriate-family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. OBJECTIVE:This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. METHODS:We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs' content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. RESULTS:Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs-10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). CONCLUSIONS:Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.
| S-EPMC7109619 | biostudies-literature
Project description:BackgroundAdvance Care Planning (ACP) helps people discuss personal values, goals and priorities regarding future care with family and professionals. It can support care coordination and guide decision-making as health deteriorates. However, uptake remains low internationally. Poor communication and information due to Covid-19 pressures exacerbated public and professional criticism and concerns. Recent recommendations highlight the importance of understanding and addressing public perceptions about ACP combined with person-centred approaches to ACP conversations.ObjectivesTo explore public perceptions of ACP to inform increased public engagement and empowerment.MethodsJoanna Briggs Institute methodology was applied in a rapid scoping review. Three databases (Embase, MEDLINE, APA PsycInfo) were searched for English language reviews and primary or secondary research studies from 2015 to 2021. Following title and abstract review, two researchers screened full-text articles and performed data extraction independently using Covidence. Charted data were analysed for themes and subthemes starting with two recent published reviews. Emerging findings were added and data synthesis reviewed by the research team, including public-patient representatives, to achieve consensus.ResultsOf 336 studies, 20 included reviews and research papers represented diverse public views, situations and contexts. Studies found poor public knowledge of ACP and widespread perceptions of confusing or accessible information. Multiple reports described little personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Studies identified public concerns stemming from reluctance to discuss death and dying despite this being just one aspect of ACP. Research with minority communities and marginalised groups found intensified concerns. Some studies cited people who valued maintaining autonomy by expressing their goals and preferences.ConclusionsStudies reviewed found many members of the public had negative or unclear perceptions of ACP. Improved knowledge and understanding appeared to influence perceptions of ACP but were not considered sufficient to change behaviours. The research provided valuable insights from members of the public that could inform current professional and societal debates about the future of ACP. Findings point to a need for novel approaches to ACP public information and involvement whilst bearing in mind societal norms, diverse cultures and contexts.
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Project description:BackgroundAdvance care planninganning (ACP) is a priority within palliative care service provision. Nurses working in the community occupy an opportune role to engage with families and patients in ACP. Carers and family members of palliative patients often find ACP discussions difficult to initiate. However, community nurses caring for palliative patients can encourage these discussions, utilising the rapport and relationships they have already built with patients and families. Despite this potential, implementation barriers and facilitators continue to exist. To date, no research synthesis has captured the challenges community nurses face when implementing ACP, nor the facilitators of community nurse-led ACP. Considering this, the review question of: 'What factors contribute to or hinder ACP discussion for nurses when providing care to palliative patients?' was explored.MethodTo capture challenges and facilitators, a global qualitative scoping review was undertaken in June 2023. The Arksey and O'Malley framework for scoping reviews guided the review methodology. Six databases were searched identifying 333 records: CINAHL (16), MEDLINE (45), PUBMED (195), EMBASE (30), BJOCN (15), IJOPN (32). After de-duplication and title and abstract screening, 108 records remained. These were downloaded, hand searched (adding 5 articles) and subject to a full read. 98 were rejected, leaving a selected dataset of 15 articles. Data extracted into a data extraction chart were thematically analysed.ResultsThree key themes were generated: 'Barriers to ACP', 'Facilitators of ACP' and 'Understanding of professional role and duty'. Key barriers were - lack of confidence, competence, role ambiguity and prognostic uncertainty. Key facilitators concerned the pertinence of the patient-practitioner relationship enabling ACP amongst nurses who had both competence and experience in ACP and/or palliative care (e.g., palliative care training). Lastly, nurses understood ACP to be part of their role, however, met challenges understanding the law surrounding this and its application processes.ConclusionsThis review suggests that community nurses' experience and competence are associated with the effective implementation of ACP with palliative patients. Future research is needed to develop interventions to promote ACP uptake in community settings, enable confidence building for community nurses and support higher standards of palliative care via the implementation of ACP.
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Project description:Cytoplasmic ribonucleoproteins called stress granules (SGs) are considered as one of the main cellular solutions against stress. Their temporary presence ends with stress relief. Any factor such as chronic stress or mutations in the structure of the components of SGs that lead to their permanent presence can affect their interactions with pathological aggregations and increase the degenerative effects. SGs involved in RNA mechanisms are important factors in the pathophysiology of neurodegenerative disorders such as amyotrophic lateral sclerosis (ALS), frontotemporal degeneration (FTD), and Alzheimer's diseases (AD). Although many studies have been performed in the field of SGs and neurodegenerative disorders, so far, no systematic studies have been executed in this field. The purpose of this study is to provide a comprehensive perspective of all studies about the role of SGs in the pathogenesis of neurodegenerative disorders with a focus on the protein ingredients of these granules. This scoping review is based on a six-stage methodology structure and the PRISMA guideline. A systematic search of seven databases for qualified articles was conducted until December 2020. Publications were screened independently by two reviewers and quantitative and qualitative analysis was performed on the extracted data. Bioinformatics analysis was used to plot the network and predict interprotein interactions. In addition, GO analysis was performed. A total of 48 articles were identified that comply the inclusion criteria. Most studies on neurodegenerative diseases have been conducted on ALS, AD, and FTD using human post mortem tissues. Human derived cell line studies have been used only in ALS. A total 29 genes of protein components of SGs have been studied, the most important of which are TDP-43, TIA-1, PABP-1. Bioinformatics studies have predicted 15 proteins to interact with the protein components of SGs, which may be the constituents of SGs. Understanding the interactions between SGs and pathological aggregations in neurodegenerative diseases can provide new targets for treatment of these disorders.
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Project description:BackgroundAdvance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real-world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics.MethodsWe searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer-reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care).ResultsWe included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty-four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty-one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease.ConclusionsIn RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.
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Project description:Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity. Although a number of studies have documented social workers' attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers' perspectives and experiences regarding implementation of advance care planning.Six databases were searched for peer-reviewed research papers from their respective inception through December 2016. All of the resulting studies relevant to both advance care planning and social worker were examined. The findings of relevant studies were synthesized thematically.Thirty-one articles met the eligibility criteria. Six research themes were identified: social workers' attitudes toward advance care planning; social workers' knowledge, education and training regarding advance care planning; social workers' involvement in advance care planning; social workers' perceptions of their roles; ethical issues relevant to advance care planning; and the effect of social work intervention on advance care planning engagement. The findings suggest that there is a consensus among social workers that advance care planning is their duty and responsibility and that social workers play an important role in promoting and implementing advance care planning through an array of activities.This study provides useful knowledge for implementing advance care planning through illustrating social workers' perspectives and experiences. Further studies are warranted to understand the complexity inherent in social workers' involvement in advance care planning for different life-limiting illnesses or within different socio-cultural contexts.
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Project description:AimThis scoping review aims to elucidate the effectiveness of advance care planning interventions for patients entering the intensive care unit and their families.DesignScoping review of relevant literature from January 2000-March 2020.MethodsThis review includes studies undertaken in intensive care units that focus on patients older than 18 years or their families. The review will be conducted in accordance with the PRISMA-P guideline. The PubMed, EMBASE, CINAHL, BNI, PsycINFO and ICHUSHI databases and the Cochrane Library will be searched for both published and unpublished articles. Two independent reviewers will examine the list of remaining titles and summarize and identify articles that meet the inclusion criteria.ResultsIt has long been taboo to consider end-of-life care when in intensive care unit. However, promoting advance care planning, even in patients who are in the intensive care unit, is important and it may help support the patient's need for autonomy.
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Project description:Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.
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