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1.
Palliat Med ; 38(4): 457-470, 2024 Apr.
Article En | MEDLINE | ID: mdl-38634232

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.


Advance Care Planning , Dementia , Humans , Palliative Care , Consensus , Goals , Delphi Technique
2.
Health Expect ; 27(2): e14046, 2024 Apr.
Article En | MEDLINE | ID: mdl-38623837

BACKGROUND: Globally, it is estimated that one in three adults live with two or more long-term conditions (multiple long-term conditions, MLTCs), that require self-management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient-healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self-managing MLTCs, amongst people who experience socioeconomic deprivation. METHODS: Semistructured one-to-one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. FINDINGS: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self-management, including social isolation, area-based and economic exclusion, and health-related stigma and (4) adapting self-management strategies, including cost-effective, and culturally/lifestyle appropriate strategies. CONCLUSIONS: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self-management of MLTCs are of great importa. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data.


Self-Management , Adult , Humans , Qualitative Research , United Kingdom , Medically Underserved Area , Socioeconomic Factors
3.
Gut ; 2024 Apr 25.
Article En | MEDLINE | ID: mdl-38621924

OBJECTIVE: Targeting bacterial translocation in cirrhosis is limited to antibiotics with risk of antimicrobial resistance. This study explored the therapeutic potential of a non-absorbable, gut-restricted, engineered carbon bead adsorbent, Yaq-001 in models of cirrhosis and acute-on-chronic liver failure (ACLF) and, its safety and tolerability in a clinical trial in cirrhosis. DESIGN: Performance of Yaq-001 was evaluated in vitro. Two-rat models of cirrhosis and ACLF, (4 weeks, bile duct ligation with or without lipopolysaccharide), receiving Yaq-001 for 2 weeks; and two-mouse models of cirrhosis (6-week and 12-week carbon tetrachloride (CCl4)) receiving Yaq-001 for 6 weeks were studied. Organ and immune function, gut permeability, transcriptomics, microbiome composition and metabolomics were analysed. The effect of faecal water on gut permeability from animal models was evaluated on intestinal organoids. A multicentre, double-blind, randomised, placebo-controlled clinical trial in 28 patients with cirrhosis, administered 4 gr/day Yaq-001 for 3 months was performed. RESULTS: Yaq-001 exhibited rapid adsorption kinetics for endotoxin. In vivo, Yaq-001 reduced liver injury, progression of fibrosis, portal hypertension, renal dysfunction and mortality of ACLF animals significantly. Significant impact on severity of endotoxaemia, hyperammonaemia, liver cell death, systemic inflammation and organ transcriptomics with variable modulation of inflammation, cell death and senescence in the liver, kidneys, brain and colon was observed. Yaq-001 reduced gut permeability in the organoids and impacted positively on the microbiome composition and metabolism. Yaq-001 regulated as a device met its primary endpoint of safety and tolerability in the clinical trial. CONCLUSIONS: This study provides strong preclinical rationale and safety in patients with cirrhosis to allow clinical translation. TRIAL REGISTRATION NUMBER: NCT03202498.

4.
Health Expect ; 27(1): e13987, 2024 Feb.
Article En | MEDLINE | ID: mdl-38343168

INTRODUCTION: Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners. METHODS: A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model. RESULTS: Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. CONCLUSIONS: The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work.


Decision Support Systems, Clinical , Dementia , Humans , Dementia/therapy , Dementia/diagnosis , Decision Making, Shared , Caregivers , Qualitative Research
5.
Clin Nutr ESPEN ; 59: 307-311, 2024 02.
Article En | MEDLINE | ID: mdl-38220391

We provide comprehensive insights into the peer review process and guide potential reviewers through the steps of reviewing scientific manuscripts. We discuss essential aspects such as the reviewer's responsibility in responding to invitations and maintaining confidentiality throughout the process, the criteria for accepting or rejecting papers, and efficient review of resubmissions. We emphasize the importance of prioritizing the review responsibility within other commitments, communication using professional and courteous language, and adherence to deadlines. We also offer practical tips on evaluating the abstract, introduction, materials and methods, results, and discussion section and summarizing the critiques in the review report.


Peer Review, Research , Publishing , Humans
6.
BMC Med Educ ; 24(1): 57, 2024 Jan 11.
Article En | MEDLINE | ID: mdl-38212802

BACKGROUND: Artificial intelligence-based large language models, like ChatGPT, have been rapidly assessed for both risks and potential in health-related assessment and learning. However, their applications in public health professional exams have not yet been studied. We evaluated the performance of ChatGPT in part of the Faculty of Public Health's Diplomat exam (DFPH). METHODS: ChatGPT was provided with a bank of 119 publicly available DFPH question parts from past papers. Its performance was assessed by two active DFPH examiners. The degree of insight and level of understanding apparently displayed by ChatGPT was also assessed. RESULTS: ChatGPT passed 3 of 4 papers, surpassing the current pass rate. It performed best on questions relating to research methods. Its answers had a high floor. Examiners identified ChatGPT answers with 73.6% accuracy and human answers with 28.6% accuracy. ChatGPT provided a mean of 3.6 unique insights per question and appeared to demonstrate a required level of learning on 71.4% of occasions. CONCLUSIONS: Large language models have rapidly increasing potential as a learning tool in public health education. However, their factual fallibility and the difficulty of distinguishing their responses from that of humans pose potential threats to teaching and learning.


Artificial Intelligence , Public Health , Humans , Health Education , Learning , Language
7.
BMJ Lead ; 2024 Jan 05.
Article En | MEDLINE | ID: mdl-38182414

BACKGROUND: The potential for addressing healthcare inequalities in prescribed specialised services has historically been overlooked. There is evidence that prescribed specialised services can exacerbate inequalities even though they are often accessed at the end of complex pathways and by relatively small numbers of people. Leadership is required to facilitate a systematic approach to identifying and addressing inequalities in this area. METHODS: A rapid literature review of articles from 2015 onwards and engagement with stakeholders was used to inform the development of a framework that both supports the identification of health inequalities within specialised services and provides recommendations for how to address them. RESULTS: The framework aligns with existing national approaches in England to addressing health inequalities in other healthcare settings. It is prepopulated with features of services that may create inequalities and recommended ways of addressing them and can be readily adapted to suit population specific needs. CONCLUSION: The potential for addressing health inequalities should be considered at all points along a healthcare pathway. Local service leaders need to be empowered and encouraged to identify and deliver on opportunities for change to continually improve patient access, experience and outcomes.

8.
BMC Health Serv Res ; 24(1): 92, 2024 Jan 17.
Article En | MEDLINE | ID: mdl-38233917

INTRODUCTION: Self-management interventions consist of multiple components to support people in the management of medical, emotional, and behavioural aspects of their condition, and aim to improve quality of life, function, and other outcomes. A systematic review of self-management interventions in Parkinson's showed no conclusive evidence for effectiveness of specific self-management approaches in Parkinson's to date but identified several potentially useful components. AIM: To identify the key required components for self-management in people with Parkinson's by synthesising evidence from a body of primary qualitative evidence and systematic reviews, and to explore which of these key components should be incorporated into trials of self-management in Parkinson's. METHOD: A mixed-methods synthesis was conducted. We combined data from two primary qualitative studies and a systematic review of qualitative studies that focused on self-management in Parkinson's to identify key intervention components. These were then mapped onto the results of a systematic review of Randomised Controlled Trials (RCTs) using matrices. First, data were extracted from the qualitative studies with people with Parkinson's and healthcare professionals on the key self-management components in this population. Second, a matrix table was created to map the identified Parkinson's specific self-management components against potential effectiveness from published RCTs of self-management interventions. RESULTS: Synthesis of qualitative data identified 15 potential self-management components. These 15 components included components needed to start self-managing (e.g., information, skill acquirement) and components needed to maintain self-managing (e.g., self-motoring, increasing motivation). From 18 RCTs, interventions varied in how many components were included (range 1-10). Trials reporting significant beneficial effects of their intervention included a higher number of components (4 or more self-management components) than trials without significant findings (1-3 self-management components). CONCLUSION: Fifteen key self-management components were identified that should be incorporated into interventions or programs of self-management in Parkinson's. No current trial has incorporated all aspects, but a higher number of these key components appears to make trials of self-management interventions more likely to be successful.


Parkinson Disease , Self-Management , Humans , Parkinson Disease/therapy , Health Personnel
9.
Neurosci Biobehav Rev ; 157: 105507, 2024 Feb.
Article En | MEDLINE | ID: mdl-38097097

People living with dementia commonly experience anxiety, which is often challenging to manage. We investigated the effectiveness of treatments for the management of anxiety in this population. We conducted a systematic review and meta-analysis of randomised controlled trials, and searched EMBASE, CINAHL, MEDLINE and PsycInfo. We estimated standardised mean differences at follow-up between treatments relative to control groups and pooled these across studies using random-effects models where feasible. Thirty-one studies were identified. Meta-analysis demonstrated non-pharmacological interventions were effective in reducing anxiety in people living with dementia, compared to care as usual or active controls. Specifically, music therapy (SMD-1.92(CI:-2.58,-1.25)), muscular approaches (SMD-0.65(CI:-1.02,-0.28)) and stimulating cognitive and physical activities (SMD-0.31(CI:-0.53,-0.09)). Pharmacological interventions with evidence of potential effectiveness included Ginkgo biloba, probiotics, olanzapine, loxapine and citalopram compared to placebo, olanzapine compared to bromazepam and buspirone and risperidone compared to haloperidol. Meta-analyses were not performed for pharmacological interventions due to studies' heterogeneity. This has practice implications when promoting the use of more non-pharmacological interventions to help reduce anxiety among people living with dementia.


Dementia , Independent Living , Humans , Olanzapine , Anxiety/therapy , Treatment Outcome , Dementia/complications , Dementia/therapy
10.
Trials ; 24(1): 793, 2023 Dec 05.
Article En | MEDLINE | ID: mdl-38053209

BACKGROUND: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions. METHODS: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. DISCUSSION: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's. TRIAL REGISTRATION: ISRCTN92831552. Registered on 26th Oct 2021.


Dementia , Parkinson Disease , Self-Management , Humans , Cost-Benefit Analysis , Parkinson Disease/diagnosis , Parkinson Disease/therapy , Parkinson Disease/complications , Quality of Life , Single-Blind Method , Dementia/therapy , Randomized Controlled Trials as Topic
11.
Health Expect ; 2023 Nov 27.
Article En | MEDLINE | ID: mdl-38010078

BACKGROUND: Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence-based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. OBJECTIVES: Our overall aim was to codesign an evidence-based easy-to-use heuristic decision-support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. METHODS: A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision-support framework. RESULTS: The framework consists of a series of flowcharts and operates using a three-stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. CONCLUSION: Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. PATIENT AND PUBLIC CONTRIBUTION: We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework.

12.
BMC Womens Health ; 23(1): 625, 2023 11 25.
Article En | MEDLINE | ID: mdl-38007464

BACKGROUND: Islamic beliefs are associated with decreased contraceptive use compared to other religions, and Muslim women's contraceptive needs are often unmet. Research is needed to provide an in-depth understanding of the complex set of barriers to Muslim women's contraceptive use. Therefore, we aimed to explore Muslim women's awareness and experiences with family planning in Saudi Arabia and investigate barriers to contraceptive use and access to family planning. METHODS: A qualitative study using semi-structured interviews with women in a public hospital, in Riyadh, Saudi Arabia, between January and June 2019. Data was analysed using reflexive thematic analysis. RESULTS: Twenty-eight women participated in the study. Women's contraceptive awareness was limited to two methods. Women expressed positive attitudes towards family planning and did not believe it is forbidden in Islam. Barriers to contraception use included lack of knowledge, misconceptions, fear of side effects, family and community and social norms. Many women expressed that they have the right to use contraception, even if their husbands disapprove. Our findings show that healthcare providers rarely offered contraceptive advice, even when requested. Healthcare providers often prescribe oral contraceptives without offering information on other methods available. CONCLUSION: Our findings suggest that education plays a fundamental role in reproductive autonomy. Men's role in family planning should be encouraged through sharing reproductive responsibility and supporting women's contraceptive choices. Efforts should be directed towards improving women's awareness of different methods of contraception.


Family Planning Services , Islam , Male , Humans , Female , Saudi Arabia , Contraception/methods , Contraceptives, Oral , Contraception Behavior
13.
Digit Health ; 9: 20552076231211118, 2023.
Article En | MEDLINE | ID: mdl-38033518

Background: Despite positive findings around the use of eHealth in dementia care, it is rarely translated into routine practice. This can be facilitated by early involvement of end-users in the development of an implementation plan. This study aimed to co-design strategies to implement an eHealth intervention, the EMBED-Care Framework, to support assessment and decision-making for people with dementia in care homes. Methods: A qualitative co-design method was applied through a series of workshops. Participants included family carers and health and social care practitioners. People with dementia were included through a series of stakeholder engagement meetings. The workshops focused on co-developing strategies in response to identified determinants of implementation. A codebook thematic analytic approach was taken, guided by the Normalisation Process Theory (NPT). Results: Three workshops were conducted from July 2021 to November 2021, attended by 39 participants. Three overarching phases of implementation were identified which aligned with the constructs of the NPT: (a) incentivising adoption of the Framework, which requires promotion of its benefits and alignment with recommendations for good quality dementia care to engage stakeholders, relating to 'coherence' and 'cognitive participation' constructs; (b) enabling its operation, which requires ensuring compatibility with care home processes, provision of training and support from 'champions', relating to 'collective action'; (c) sustaining use of the Framework, which requires monitoring of implementation and appraisal of its effects, relating to 'reflexive monitoring'. Conclusions: We have developed a multi-strategy, theoretically driven plan to implement eHealth to support assessment and decision-making for people with dementia in care homes. Successful implementation requires incentivisation to adopt, ability to operate and motivation to sustain use of eHealth. The plan is strengthened through collaborating with end-users to increase its value, credibility and real-world relevance. The theoretically informed strategies target mechanisms of the NPT, demonstrated to shape the implementation process and outcomes, ready for testing.

14.
Front Public Health ; 11: 1248695, 2023.
Article En | MEDLINE | ID: mdl-37881344

Background: Muslim women are especially vulnerable to sexually transmitted infections (STI) and are at higher risk of under-detection. Evidence on the unique barriers to STI testing and diagnosis among Muslim communities is severely lacking. Understanding the complexity of accessing STI testing and diagnosis in Muslim communities is an area that requires further exploration. We aimed to explore the multilevel barriers to STI testing and diagnosis among Muslim women. Methods: We conducted qualitative semi-structured interviews informed by the ecological model of health. This study took place in Riyadh Saudi Arabia in 2019 with women aged over 18. Data were analysed using reflexive thematic analysis. Results: Twenty-eight women were interviewed from different ages, marital status, employment, and educational levels. Muslim women's perceived barriers to STI testing and diagnosis included personal, socio-cultural, and service-level barriers. Lack of knowledge about STIs, denial, and underestimating the seriousness of infection and symptoms were among the many individual barriers to STIs testing and diagnosis. Religious views towards extramarital sex and negative views of people with STIs is a significant barrier to STI testing and diagnosis. Lack of patient confidentiality and providers' judgement and mistreatment were also cited as barriers to seeking healthcare. Conclusion: Barriers to STI testing and diagnosis exist on many levels including personal, socio-cultural, religious, and healthcare services, and at policy level. Multilevel interventions are needed to reduce the stigma of STIs and facilitate access to sexual health services among Muslims. It is our recommendation that policy and research efforts are directed to enhance trust in the doctor-patient relationship through better clinical training as well as implementing stricter regulations to protect patients' confidentiality in healthcare settings.


Islam , Sexually Transmitted Diseases , Humans , Female , Adolescent , Adult , Physician-Patient Relations , Saudi Arabia , Sexually Transmitted Diseases/diagnosis , Social Stigma
15.
Educ Prim Care ; 34(4): 211-219, 2023 Jul.
Article En | MEDLINE | ID: mdl-37742228

Clinical reasoning is a vital medical education skill, yet its nuances in undergraduate primary care settings remain debated. This systematic review explores clinical reasoning teaching and learning intricacies within primary care. We redefine clinical reasoning as dynamically assimilating and prioritising synthesised patient, significant other, or healthcare professional information for diagnoses or non-diagnoses. This focused meta-synthesis applies transformative learning theory to primary care clinical reasoning education. A comprehensive analysis of 29 selected studies encompassing various designs made insights into clinical reasoning learning dimensions visible. Primary care placements in varying duration and settings foster diverse instructional methods like bedside teaching, clinical consultations, simulated clinics, virtual case libraries, and more. This review highlights the interplay between disease-oriented and patient-centred orientations in clinical reasoning learning. Transformative learning theory provides an innovative lens, revealing stages of initiation, persistence, time and space, and competence and confidence in students' clinical reasoning evolution. Clinical teachers guide this transformation, adopting roles as fortifiers, connoisseurs, mediators, and monitors. Patient engagement spans passive to active involvement, co-constructing clinical reasoning. The review underscores theoretical underpinnings' significance in shaping clinical reasoning pedagogy, advocating broader diversity. Intentional student guidance amid primary care complexities is vital. Utilising transformative learning, interventions bridging cognitive boundaries enhance meaningful clinical reasoning learning experiences. This study contributes insights for refining pedagogy, encouraging diverse research, and fostering holistic clinical reasoning development.


Education, Medical, Undergraduate , Students, Medical , Humans , Clinical Competence , Clinical Reasoning , Education, Medical, Undergraduate/methods , Learning , Primary Health Care , Students , Students, Medical/psychology
16.
Parkinsons Dis ; 2023: 9732217, 2023.
Article En | MEDLINE | ID: mdl-37675146

Background: Cognitive impairment is common in Parkinson's disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. Methods: Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019-2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. Results: Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. Conclusions: This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia.

17.
J Public Health (Oxf) ; 45(4): 970-1041, 2023 Nov 29.
Article En | MEDLINE | ID: mdl-37553102

BACKGROUND: Long-term conditions (LTCs) are prevalent in socio-economically deprived populations. Self-management interventions can improve health outcomes, but socio-economically deprived groups have lower participation in them, with potentially lower effectiveness. This review explored whether self-management interventions delivered to people experiencing socio-economic deprivation improve outcomes. METHODS: We searched databases up to November 2022 for randomized trials. We screened, extracted data and assessed the quality of these studies using Cochrane Risk of Bias 2 (RoB2). We narratively synthesized all studies and performed a meta-analysis on eligible articles. We assessed the certainty of evidence using GRADE for articles included in the meta-analysis. RESULTS: The 51 studies included in this review had mixed findings. For the diabetes meta-analysis, there was a statistically significant pooled reduction in haemoglobin A1c (-0.29%). We had moderate certainty in the evidence. Thirty-eight of the study interventions had specific tailoring for socio-economically deprived populations, including adaptions for low literacy and financial incentives. Each intervention had an average of four self-management components. CONCLUSIONS: Self-management interventions for socio-economically deprived populations show promise, though more evidence is needed. Our review suggests that the number of self-management components may not be important. With the increasing emphasis on self-management, to avoid exacerbating health inequalities, interventions should include tailoring for socio-economically deprived individuals.


Self-Management , Humans , Developed Countries , Poverty , Income
18.
J Med Ethics ; 2023 Aug 19.
Article En | MEDLINE | ID: mdl-37597968

In 'The Pregnancy Rescue Case: why abortion is immoral', Hendricks presents The Pregnancy Rescue Case. In this reply I argue that even if it would be better (i.e., less bad) for the abortion to be prevented in The Pregnancy Rescue Case, that does not mean that typical abortions are impermissible. I also argue that there is a possible explanation, consistent with the pro-choice view and empirically testable, as to why people would think it better for the abortion to be prevented in The Pregnancy Rescue Case.

19.
PLoS One ; 18(7): e0276471, 2023.
Article En | MEDLINE | ID: mdl-37498969

INTRODUCTION: There has been global investment of new ways of working to support workforce pressures, including investment in clinical pharmacists working in primary care by the NHS in the England. Clinical pharmacists are well suited to support older adults who have multiple long-term conditions and are on multiple medications. It is important to establish an evidence base for the role of clinical pharmacists in supporting older adults in primary care, to inform strategic and research priorities. The aim of this scoping review is to identify, map and describe existing research and policy/guidance on the role of clinical pharmacists in primary care supporting older adults, and the models of care they provide. METHODS AND ANALYSIS: A scoping review guided by the Joanne Briggs Institute methodology for scoping reviews, using a three-step strategy. We will search Medline, CINAHL, Scopus, EMBASE, Web of Science, PSYCHInfo, and Cochrane for English language articles, from 2015 -present day. Grey literature will be searched using Grey Matters guidelines, the Index of Grey Literature and Alternative Sources and Resources, and Google keyword searching. References of all included sources will be hand searched to identify further resources. Using the Population, Concept and Context framework for inclusion and exclusion criteria, articles will be independently screened by two reviewers. The inclusion and exclusion criteria will be refined after we become familiar with the search results, following the iterative nature of a scoping review. Data will be extracted using a data extraction tool using Microsoft Excel and presented using a narrative synthesis approach. ETHICS AND DISSEMINATION: Ethical approval is not required for this review. Review findings will be disseminated in academic conferences and used to inform subsequent qualitative research. Findings will be published and shared with relevant local and national organisations.


Pharmacists , Research Design , Humans , Aged , Policy , Primary Health Care , United Kingdom , Review Literature as Topic
20.
J Hepatol ; 79(1): 79-92, 2023 07.
Article En | MEDLINE | ID: mdl-37268222

BACKGROUND & AIMS: Acute-on-chronic liver failure (ACLF) is characterized by severe systemic inflammation, multi-organ failure and high mortality rates. Its treatment is an urgent unmet need. DIALIVE is a novel liver dialysis device that aims to exchange dysfunctional albumin and remove damage- and pathogen-associated molecular patterns. This first-in-man randomized-controlled trial was performed with the primary aim of assessing the safety of DIALIVE in patients with ACLF, with secondary aims of evaluating its clinical effects, device performance and effect on pathophysiologically relevant biomarkers. METHODS: Thirty-two patients with alcohol-related ACLF were included. Patients were treated with DIALIVE for up to 5 days and end points were assessed at Day 10. Safety was assessed in all patients (n = 32). The secondary aims were assessed in a pre-specified subgroup that had at least three treatment sessions with DIALIVE (n = 30). RESULTS: There were no significant differences in 28-day mortality or occurrence of serious adverse events between the groups. Significant reduction in the severity of endotoxemia and improvement in albumin function was observed in the DIALIVE group, which translated into a significant reduction in the CLIF-C (Chronic Liver Failure consortium) organ failure (p = 0.018) and CLIF-C ACLF scores (p = 0.042) at Day 10. Time to resolution of ACLF was significantly faster in DIALIVE group (p = 0.036). Biomarkers of systemic inflammation such as IL-8 (p = 0.006), cell death [cytokeratin-18: M30 (p = 0.005) and M65 (p = 0.029)], endothelial function [asymmetric dimethylarginine (p = 0.002)] and, ligands for Toll-like receptor 4 (p = 0.030) and inflammasome (p = 0.002) improved significantly in the DIALIVE group. CONCLUSIONS: These data indicate that DIALIVE appears to be safe and impacts positively on prognostic scores and pathophysiologically relevant biomarkers in patients with ACLF. Larger, adequately powered studies are warranted to further confirm its safety and efficacy. IMPACT AND IMPLICATIONS: This is the first-in-man clinical trial which tested DIALIVE, a novel liver dialysis device for the treatment of cirrhosis and acute-on-chronic liver failure, a condition associated with severe inflammation, organ failures and a high risk of death. The study met the primary endpoint, confirming the safety of the DIALIVE system. Additionally, DIALIVE reduced inflammation and improved clinical parameters. However, it did not reduce mortality in this small study and further larger clinical trials are required to re-confirm its safety and to evaluate efficacy. CLINICAL TRIAL NUMBER: NCT03065699.


Acute-On-Chronic Liver Failure , End Stage Liver Disease , Humans , Acute-On-Chronic Liver Failure/therapy , Acute-On-Chronic Liver Failure/complications , Standard of Care , Prognosis , Renal Dialysis/adverse effects , Liver Cirrhosis/complications , Biomarkers , Inflammation/complications
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