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1.
J Surg Case Rep ; 2023(4): rjad205, 2023 Apr.
Article in English | MEDLINE | ID: mdl-37124576

ABSTRACT

A 44-year-old female patient presented with weight loss, diarrhea and intermittent episodes of left upper quadrant (LUQ) pain lasting for 3 years, accompanied by acute episodes of focal LUQ pain, dizziness, tachycardia, borborygmi and bloating, occurring approximately 60 min after meals. The patient developed chronic acalculous cholecystitis and transient exocrine pancreatic insufficiency after infection with Coxsackievirus B4 (CVB4), which resolved following laparoscopic cholecystectomy 2 years before the current presentation. Although imaging and functional investigation studies were unremarkable, a gastric transit study revealed rapid clearance of radiolabeled food, and the patient's symptomatology and gastrointestinal studies supported the diagnosis of late dumping syndrome. The patient's symptoms significantly improved with adherence to recommended dietary changes, including an increase in protein intake, abstinence from simple carbohydrates and avoidance of simultaneous consumption of beverages with food, following consultation with a dietitian.

2.
J Surg Case Rep ; 2022(3): rjac074, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35300287

ABSTRACT

A 41-year-old female presented with an 8-month history of right upper quadrant pain, exacerbated by ingestion of saturated fats. The patient was positive for antibodies to Coxsackievirus serotype B4, established by an investigation incited by an acute episode of pleurodynia 8 months before the current presentation. Imaging studies including a hepatobiliary iminodiacetic acid scan showed no gallbladder structural or functional abnormalities. Laboratory studies indicated pancreatic enzyme insufficiency associated with below-normal lipase and amylase levels. Patient symptomology was consistent with cholecystitis with positive Murphy's sign, so cholecystectomy was recommended. Post-surgery pathological report confirmed chronic acalculous cholecystitis. Patient demonstrated full recovery, indicated by return of normal pancreatic enzymes levels and resolution of abdominal pain.

3.
BMC Palliat Care ; 18(1): 87, 2019 Oct 24.
Article in English | MEDLINE | ID: mdl-31651310

ABSTRACT

BACKGROUND: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. METHOD: Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. RESULTS: The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. CONCLUSIONS: Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.


Subject(s)
Caregivers/psychology , Dementia/therapy , Terminal Care/psychology , Terminal Care/standards , Adult , Aged , Caregivers/statistics & numerical data , Dementia/complications , Dementia/psychology , Female , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Qualitative Research , Quality of Health Care , Terminal Care/methods , Uncertainty
4.
Palliat Med ; 33(6): 578-588, 2019 06.
Article in English | MEDLINE | ID: mdl-30747052

ABSTRACT

BACKGROUND: Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care. AIMS: To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring the understandings of palliative care clinicians, (2) examining documented sedative use in patient records and (3) comparing findings from both investigations. DESIGN: We conducted focus groups with experienced palliative care physicians and nurses, and simultaneously reviewed deceased patient records. SETTING/PARTICIPANTS: In total, 10 physicians and 17 senior nurses in London hospice or hospital/community palliative care took part in eight focus groups. Simultaneously, 50 patient records for people who received continuous sedation at end of life in the hospice and hospital were retrieved and reviewed. RESULTS: Focus group participants all said that they used sedative medication chiefly for managing agitation or distress; selecting drugs and dosages as appropriate for patients' individual needs; and aiming to use the lowest possible dosages for patients to be 'comfortable', 'calm' or 'relaxed'. None used structured observational tools to assess sedative effects, strongly preferring clinical observation and judgement. The patient records' review corroborated these qualitative findings, with the median continuous dose of midazolam administered being 10 mg/24 h (range: 0.4-69.5 mg/24 h). CONCLUSION: Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice.


Subject(s)
Attitude of Health Personnel , Health Personnel/psychology , Hospice and Palliative Care Nursing/methods , Hypnotics and Sedatives/therapeutic use , Midazolam/therapeutic use , Palliative Care/methods , Terminal Care/methods , Adult , Decision Making , Female , Focus Groups , Humans , London , Longitudinal Studies , Male , Middle Aged
5.
Palliat Med ; 32(3): 668-681, 2018 03.
Article in English | MEDLINE | ID: mdl-28922625

ABSTRACT

BACKGROUND: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. AIMS: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. DESIGN: 9-month prospective cohort study. SETTING AND PARTICIPANTS: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. MAIN OUTCOME MEASURES: At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). RESULTS: Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had 'do not resuscitate' statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. CONCLUSION: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.


Subject(s)
Dementia/nursing , Dementia/psychology , Palliative Care/psychology , Patient Acceptance of Health Care/psychology , Patient Acceptance of Health Care/statistics & numerical data , Quality of Life/psychology , Terminal Care/psychology , Aged, 80 and over , Cohort Studies , England , Female , Humans , Male , Palliative Care/statistics & numerical data , Prospective Studies , Surveys and Questionnaires , Symptom Assessment , Terminal Care/statistics & numerical data
6.
Dementia (London) ; 17(2): 164-179, 2018 Feb.
Article in English | MEDLINE | ID: mdl-26935834

ABSTRACT

People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals' attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.


Subject(s)
Attitude of Health Personnel , Delivery of Health Care, Integrated , Dementia/nursing , Health Personnel/psychology , Severity of Illness Index , Humans , Interviews as Topic , Nursing Homes , Qualitative Research , Terminal Care/psychology , United Kingdom
7.
BMJ Open ; 7(6): e015515, 2017 07 10.
Article in English | MEDLINE | ID: mdl-28694253

ABSTRACT

BACKGROUND: Many people with dementia die in nursing homes, but quality of care may be suboptimal. We developed the theory-driven 'Compassion Intervention' to enhance end-of-life care in advanced dementia. OBJECTIVES: To (1) understand how the Intervention operated in nursing homes in different health economies; (2) collect preliminary outcome data and costs of an interdisciplinary care leader (ICL) to facilitate the Intervention; (3) check the Intervention caused no harm. DESIGN: A naturalistic feasibility study of Intervention implementation for 6 months. SETTINGS: Two nursing homes in northern London, UK. PARTICIPANTS: Thirty residents with advanced dementia were assessed of whom nine were recruited for data collection; four of these residents' family members were interviewed. Twenty-eight nursing home and external healthcare professionals participated in interviews at 7 (n=19), 11 (n=19) and 15 months (n=10). INTERVENTION: An ICL led two core Intervention components: (1) integrated, interdisciplinary assessment and care; (2) education and support for paid and family carers. DATA COLLECTED: Process and outcome data were collected. Symptoms were recorded monthly for recruited residents. Semistructured interviews were conducted at 7, 11 and 15 months with nursing home staff and external healthcare professionals and at 7 months with family carers. ICL hours were costed using Department of Health and Health Education England tariffs. RESULTS: Contextual differences were identified between sites: nursing home 2 had lower involvement with external healthcare services. Core components were implemented at both sites but multidisciplinary meetings were only established in nursing home 1. The Intervention prompted improvements in advance care planning, pain management and person-centred care; we observed no harm. Six-month ICL costs were £18 255. CONCLUSIONS: Implementation was feasible to differing degrees across sites, dependent on context. Our data inform future testing to identify the Intervention's effectiveness in improving end-of-life care in advanced dementia. TRIAL REGISTRATION: ClinicalTrials.gov:NCT02840318: Results.


Subject(s)
Dementia/therapy , Empathy , Terminal Care/methods , Aged , Aged, 80 and over , Attitude of Health Personnel , Attitude to Health , Caregivers , Feasibility Studies , Female , Homes for the Aged , Humans , London , Male , Nursing Homes , Patient Satisfaction , Treatment Outcome
8.
BMC Geriatr ; 17(1): 135, 2017 07 03.
Article in English | MEDLINE | ID: mdl-28673257

ABSTRACT

BACKGROUND: Many studies have examined the mental health of carers of people with dementia. Few have examined their experiences in the advanced stages of disease and into bereavement. We aimed to understand the experiences of carers during advanced dementia exploring the links between mental health and experiences of end of life care. METHODS: Mixed methods longitudinal cohort study. Thirty-five family carers of people with advanced dementia (6 at home, 29 in care homes) were recruited and assessed monthly for up to nine months or until the person with dementia died, then at two and seven months into bereavement. Assessments included: Hospital Anxiety and Depression Scale, Short Form 12 health-related quality of life, 22-item Zarit Burden Interview, Brief Coping Orientation to Problems Experienced, Inventory of Complicated Grief and Satisfaction with Care at End of Life in Dementia. Subsequently, 12 carers (34%) were bereaved and 12 undertook a qualitative interview two months after death; these data were analysed thematically. We analysed quantitative and qualitative data independently and then merged findings at the point of interpretation. RESULTS: At study entry psychological distress was high; 26% reached caseness for depression and 41% for anxiety and median complicated grief scores were 27 [IQR 22-37] indicating that on average 11 of the 16 grief symptoms occurred at least monthly. Physical health reflected population norms (mean = 50) and median burden scores were 17 [IQR 9-30]. Three qualitative themes were identified: the importance of relationships with care services, understanding of the progression of dementia, and emotional responses to advanced dementia. An overarching theme tying these together was the carer's ability to control and influence end of life care. CONCLUSIONS: While carers report high levels of psychological distress during advanced dementia, the experience of end of life care in dementia may be amenable to change with the provision of sensitive and timely information about the natural progression of dementia. Regular health status updates and end of life discussions can help families understand dementia progression and prepare for end of life. The extent to which our findings reflect practice across the UK or internationally warrants further investigation.


Subject(s)
Caregivers/psychology , Dementia/psychology , Dementia/therapy , Quality of Life/psychology , Terminal Care/psychology , Adaptation, Psychological , Adult , Aged , Anxiety/epidemiology , Anxiety/psychology , Anxiety/therapy , Caregivers/trends , Cohort Studies , Dementia/epidemiology , Depression/epidemiology , Depression/psychology , Depression/therapy , Female , Grief , Humans , Longitudinal Studies , Male , Terminal Care/trends
9.
PLoS One ; 12(3): e0174277, 2017.
Article in English | MEDLINE | ID: mdl-28346535

ABSTRACT

BACKGROUND: The neuropsychological consequences of exposure to environmental hypobaric hypoxia (EHH) remain unclear. We thus investigated them in a large group of healthy volunteers who trekked to Mount Everest base camp (5,300 m). METHODS: A neuropsychological (NP) test battery assessing memory, language, attention, and executive function was administered to 198 participants (age 44.5±13.7 years; 60% male). These were studied at baseline (sea level), 3,500 m (Namche Bazaar), 5,300 m (Everest Base Camp) and on return to 1,300 m (Kathmandu) (attrition rate 23.7%). A comparable control group (n = 25; age 44.5±14.1 years; 60% male) for comparison with trekkers was tested at/or near sea level over an equivalent timeframe so as to account for learning effects associated with repeat testing. The Reliable Change Index (RCI) was used to calculate changes in cognition and neuropsychological function during and after exposure to EHH relative to controls. RESULTS: Overall, attention, verbal ability and executive function declined in those exposed to EHH when the performance of the control group was taken into account (RCI .05 to -.95) with decline persisting at descent. Memory and psychomotor function showed decline at highest ascent only (RCI -.08 to -.56). However, there was inter-individual variability in response: whilst NP performance declined in most, this improved in some trekkers. Cognitive decline was greater amongst older people (r = .42; p < .0001), but was otherwise not consistently associated with socio-demographic, mood, or physiological variables. CONCLUSIONS: After correcting for learning effects, attention, verbal abilities and executive functioning declined with exposure to EHH. There was considerable individual variability in the response of brain function to sustained hypoxia with some participants not showing any effects of hypoxia. This might have implications for those facing sustained hypoxia as a result of any disease.


Subject(s)
Altitude , Cognition , Cognitive Dysfunction/etiology , Hypoxia/complications , Adult , Age Factors , Attention , Cognitive Dysfunction/physiopathology , Executive Function , Female , Humans , Hypoxia/physiopathology , Incidence , Language , Male , Middle Aged , Neuropsychological Tests , Prospective Studies , Risk Factors
10.
BMC Palliat Care ; 15: 55, 2016 Jul 07.
Article in English | MEDLINE | ID: mdl-27388766

ABSTRACT

BACKGROUND: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice. METHODS: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals. RESULTS: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions. CONCLUSIONS: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.


Subject(s)
Dementia/nursing , Nursing Homes , Terminal Care , Advance Care Planning/organization & administration , Caregivers/psychology , Empathy , Family Health , Grief , Health Education/organization & administration , Health Knowledge, Attitudes, Practice , Health Personnel/education , Health Personnel/organization & administration , Humans , Interview, Psychological , Medical Records , Patient Care Team/organization & administration , Professional Practice , Professional-Family Relations , Social Responsibility , Social Support , United Kingdom
11.
BMC Palliat Care ; 15: 31, 2016 Mar 10.
Article in English | MEDLINE | ID: mdl-26965309

ABSTRACT

BACKGROUND: The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers. METHOD: The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults' services and nursing staff. RESULTS: Good palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals' confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required. CONCLUSIONS: Contextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector.


Subject(s)
Advance Care Planning , Dementia/mortality , Patient Outcome Assessment , Terminal Care/methods , Terminal Care/statistics & numerical data , Adult , Dementia/nursing , Female , Humans , London , Male , Middle Aged , Nursing Homes/standards , Patient Care Planning , Qualitative Research
12.
Palliat Med ; 30(3): 279-95, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26354388

ABSTRACT

BACKGROUND: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. AIM: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. DESIGN: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. SETTING/PARTICIPANTS: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. RESULTS: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. CONCLUSION: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.


Subject(s)
Delivery of Health Care, Integrated/organization & administration , Dementia/therapy , Nursing Homes/standards , Terminal Care/organization & administration , Attitude of Health Personnel , Delivery of Health Care, Integrated/standards , Humans , Models, Organizational , Palliative Care/organization & administration , Palliative Care/standards , Quality of Life , Terminal Care/standards , United Kingdom
13.
J Trauma Acute Care Surg ; 79(3 Suppl 1): S42-7, 2015 Sep.
Article in English | MEDLINE | ID: mdl-26308121

ABSTRACT

BACKGROUND: The Impact program is an adolescent, injury prevention program with both school- and hospital-based components aimed at decreasing high-risk behaviors and preventing injury. The objective of this study was to obtain student input on the school-based component of Impact, as part of the program evaluation and redesign process, to ensure that the program content and format were optimal and relevant, addressing injury-related issues important for youth in our region. METHODS: Secondary schools were selected in various geographic regions with students varying in language, religion, and socioeconomic status. A mixed-methods questionnaire was developed and pretested on program content, format, relevance, quality, and effectiveness. Attitude and opinion questions on issues facing teens today were ranked on a 7-point Likert scale. Open-ended, qualitative questions were included in the focus groups, with responses themed. RESULTS: There were 167 respondents in the nine geographically, socioeconomically, and culturally diverse focus groups with a mean age of 16 years, 52% were male, and 69% were in Grade 11. Ninety-three percent of respondents rated the content of Impact as comprehensive (median, 6 of 7, with 7 being very comprehensive), and 29% rated the format a 5 of 7. Impact was rated relevant (89%), addressing issues for teens (median, 6 of 7). Issues suggested to highlight included texting and driving, drugs, partying, self-harm, and abusive relationships. Texting while driving was perceived as a significantly more common (81%) injury issue for adolescents compared with other driving risk factors (p < 0.001), with one student commenting, "If you don't (text and drive), you either don't have a phone or don't have a driver's license." CONCLUSION: Injury prevention programs must be continually evaluated to ensure they are relevant, addressing issues important for youth, and presented in a format that resonates with the audience. Student focus groups identified motor vehicle collisions and texting as important issues as well as a desire for teens to hear personal stories with a visual element. This provided the information needed to develop the next logical direction for our program, the production of a distracted driving video ("Distracted Driving: Josh's Story," http://youtu.be/BFPke9gBybc) to be incorporated into school presentations. LEVEL OF EVIDENCE: Epidemiologic/prognostic study, level III.


Subject(s)
Accident Prevention/methods , Accidents, Traffic/prevention & control , Attention , Students/psychology , Adolescent , Female , Focus Groups , Humans , Male , Surveys and Questionnaires , Video Recording
14.
BMJ Open ; 4(6): e005661, 2014 Jun 17.
Article in English | MEDLINE | ID: mdl-24939815

ABSTRACT

INTRODUCTION: In the UK approximately 700,000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and their family carers. Consensus on intervention content was achieved using the RAND UCLA appropriateness method and mapped to sociological theories of process and impact. Core components are: (1) facilitation of integrated care, (2) education, training and support, (3) investment from commissioners and care providers. We present the protocol for an exploratory phase I study to implement components 1 and 2 in order to understand how the intervention operates in practice and to assess feasibility and acceptability. METHODS AND ANALYSIS: An 'Interdisciplinary Care Leader (ICL)' will work within two care homes, alongside staff and associated professionals to facilitate service integration, encourage structured needs assessment, develop the use of personal and advance care plans and support staff training. We will use qualitative and quantitative methods to collect data for a range of outcome and process measures to detect effects on individual residents, family carers, care home staff, the intervention team, the interdisciplinary team and wider systems. Analysis will include descriptive statistics summarising process and care home level data, individual demographic and clinical characteristics and data on symptom burden, clinical events and quality of care. Qualitative data will be explored using thematic analysis. Findings will inform a future phase II trial. ETHICS AND DISSEMINATION: Ethical approval was granted (REC reference 14/LO/0370). We shall publish findings at conferences, in peer-reviewed journals, on the Marie Curie Cancer Care website and prepare reports for dissemination by organisations involved with end-of-life care and dementia.


Subject(s)
Dementia/therapy , Home Care Services , Aged , Empathy , Feasibility Studies , Humans , Research Design , Severity of Illness Index
15.
Inflamm Bowel Dis ; 20(4): 712-22, 2014 Apr.
Article in English | MEDLINE | ID: mdl-24577114

ABSTRACT

BACKGROUND: Recent studies link endoplasmic reticulum (ER) stress and the unfolded protein response (UPR) to inflammatory bowel disease. Altered eIF2α phosphorylation (eIF2α-P), a regulatory hub of the UPR, was observed in mucosal tissue of patients with inflammatory bowel disease. In this study, we examined the mechanistic role of eIF2α-P in intestinal epithelial cell (IEC) function and intestinal homeostasis in mice. METHODS: We generated mice with villin-Cre-mediated conditional expression of nonphosphorylatable Ser51Ala mutant eIF2α in IECs (AA mice). We analyzed AA mice under normal conditions and on challenge with oral infection of Salmonella Typhimurium or dextran sulfate sodium-induced colitis. RESULTS: Loss of eIF2α-P did not affect the normal proliferation or differentiation of IECs. However, AA mice expressed decreased secretory proteins including lysozyme, suggesting eIF2α-P is required for Paneth cell function. The ultrastructure of AA Paneth cells exhibited a reduced number of secretory granules, a fragmented ER, and distended mitochondria under normal conditions. UPR gene expression was defective in AA IECs. Translation of Paneth cell specific messenger RNAs encoding lysozyme and cryptidins was significantly defective leading to the observed granule-deficient phenotype, which was associated with reduced ribosomal recruitment of these messenger RNAs to the ER membrane. Consequently, AA mice were more susceptible to oral Salmonella infection and dextran sulfate sodium-induced colitis. CONCLUSIONS: We conclude eIF2α phosphorylation is required for the normal function of intestinal Paneth cells and mucosal homeostasis by activating UPR signaling and promoting messenger RNA recruitment to the ER membrane for translation.


Subject(s)
Endoplasmic Reticulum/metabolism , Eukaryotic Initiation Factor-2/metabolism , Homeostasis , Muramidase/biosynthesis , Paneth Cells/metabolism , Paneth Cells/ultrastructure , Animals , Apoptosis , Cell Differentiation , Cell Proliferation , Colitis/chemically induced , Colitis/metabolism , Dextran Sulfate , Disease Susceptibility , Endoplasmic Reticulum/ultrastructure , Eukaryotic Initiation Factor-2/genetics , Interferon-gamma/metabolism , Mice , Mice, Inbred C3H , Mice, Transgenic , Molecular Chaperones , Muramidase/genetics , Paneth Cells/immunology , Phosphorylation , Protein Biosynthesis , RNA, Messenger/metabolism , Ribosomes/physiology , Salmonella Infections, Animal/immunology , Secretory Vesicles/ultrastructure , Signal Transduction , Stress, Physiological , Unfolded Protein Response/genetics
16.
BMJ Open ; 2(6)2012.
Article in English | MEDLINE | ID: mdl-23187973

ABSTRACT

INTRODUCTION: Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. METHODS AND ANALYSIS: To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme. ETHICS AND DISSEMINATION: Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested.

17.
Palliat Support Care ; 9(1): 3-13, 2011 Mar.
Article in English | MEDLINE | ID: mdl-21352613

ABSTRACT

OBJECTIVE: Little is known about the effectiveness of advance care planning in the United Kingdom, although policy documents recommend that it should be available to all those with life-limiting illness. METHOD: An exploratory patient preference randomized controlled trial of advance care planning discussions with an independent mediator (maximum three sessions) was conducted in London outpatient oncology clinics and a nearby hospice. Seventy-seven patients (mean age 62 years, 39 male) with various forms of recurrent progressive cancer participated, and 68 (88%) completed follow-up at 8 weeks. Patients completed visual analogue scales assessing perceived ability to discuss end-of-life planning with healthcare professionals or family and friends (primary outcome), happiness with the level of communication, and satisfaction with care, as well as a standardized measure of anxiety and depression. RESULTS: Thirty-eight patients (51%) showed preference for the intervention. Discussions with professionals or family and friends about the future increased in the intervention arms, whether randomized or preference, but happiness with communication was unchanged or worse, and satisfaction with services decreased. Trial participation did not cause significant anxiety or depression and attrition was low. SIGNIFICANCE OF RESULTS: A randomized trial of advance care planning is possible. This study provides new evidence on its acceptability and effectiveness for patients with advanced cancer.


Subject(s)
Advance Care Planning , Health Policy , Neoplasms/psychology , Patient Preference , Communication , Female , Humans , London , Male , Middle Aged , Professional-Patient Relations , State Medicine , United Kingdom
18.
Palliat Support Care ; 9(1): 73-9, 2011 Mar.
Article in English | MEDLINE | ID: mdl-21352620

ABSTRACT

OBJECTIVE: Advance care planning (ACP) provides patients with an opportunity to consider, discuss, and plan their future care with health professionals. Numerous policy documents recommend that ACP should be available to all with life-limiting illness. METHOD: Forty patients with recurrent progressive cancer completed one or more ACP discussions with a trained planning mediator using a standardized topic guide. Fifty-two interviews were transcribed verbatim and analyzed for qualitative thematic content. RESULTS: Most patients had not spoken extensively to health professionals or close persons about the future. Their concerns related to experiencing distressing symptoms or worrying how family members would cope. Some patients wished for more accurate information and were unaware of their options for care. Many felt it was doctors' responsibility to initiate such discussions, but perceived that their doctors were reluctant to do so. However, some patients felt that the time was not yet right for these conversations. SIGNIFICANCE OF RESULTS: This article reports on the recorded content of ACP discussions. The extent to which patients want to engage in ACP is variable, and support and training are needed for health professionals to initiate such discussions. Our findings do not fully support the current United Kingdom policy of introducing ACP early in life-threatening disease.


Subject(s)
Advance Care Planning , Attitude to Death , Neoplasms/psychology , Patient Preference , Terminal Care/psychology , Adult , Aged , Communication , Female , Humans , Interviews as Topic , Male , Middle Aged , Professional-Patient Relations , Qualitative Research , United Kingdom
19.
Clin Orthop Relat Res ; 468(6): 1621-9, 2010 Jun.
Article in English | MEDLINE | ID: mdl-19838644

ABSTRACT

BACKGROUND: Intraoperative cerebral microembolization occurs in a substantial proportion of patients undergoing THA. Historically, postoperative cognitive dysfunction has been attributed to different factors, including anesthesia, but the influence of the surgery has not been thoroughly examined. QUESTIONS/PURPOSES: We conducted a prospective, controlled clinical trial to assess intraoperative cerebral microembolization during THA and neuropsychologic outcome. METHODS: The presence of a patent foramen ovale (PFO) also was investigated, using transcranial Doppler, to determine whether this affected cerebral microembolic incidence and load and whether microemboli occurred as a result of specific surgical activity. Forty-five patients were recruited who underwent THA and neuropsychologic assessment; a battery of tests was administered preoperatively and at 6 weeks and 6 months postoperatively. RESULTS: Overall, patients showed improvement in total neuropsychologic change scores at both postoperative intervals. The incidence of cerebral microembolization for THA was 23%. The prevalence of PFO was 37%. PFO did not appear to influence microemboli load or incidence. More microemboli were seen during femoral component insertion and impaction. CONCLUSIONS: Intraoperative cerebral microembolization occurs in a substantial proportion of patients during THA recorded by transcranial Doppler. The microemboli load is low and is not influenced by the presence of PFO. Certain surgical activities seem responsible for greater cerebral microemboli generation. However, neuropsychologic outcome was not affected postoperatively by microemboli or other operative or patient variables.


Subject(s)
Arthroplasty, Replacement, Hip/adverse effects , Cognition Disorders/etiology , Foramen Ovale, Patent/complications , Intracranial Embolism/etiology , Osteoarthritis, Hip/surgery , Aged , Arthroplasty, Replacement, Hip/psychology , Cognition Disorders/diagnosis , Cognition Disorders/epidemiology , Female , Foramen Ovale, Patent/diagnostic imaging , Foramen Ovale, Patent/epidemiology , Humans , Incidence , Intracranial Embolism/diagnostic imaging , Intracranial Embolism/epidemiology , Male , Middle Aged , Neuropsychological Tests , Pilot Projects , Prevalence , Prospective Studies , Risk Assessment , Risk Factors , Time Factors , Treatment Outcome , Ultrasonography, Doppler, Transcranial
20.
Acta Orthop Belg ; 75(5): 671-7, 2009 Oct.
Article in English | MEDLINE | ID: mdl-19999881

ABSTRACT

Fat embolism during total joint arthroplasty or intramedullary procedures is well documented and is infrequently fatal. Considerable morbidity is associated with fat embolism syndrome, and post operative cognitive dysfunction is frequently seen, yet the exact pathophysiology remains unclear. Intraoperative cerebral microemboli can be detected using transcranial Doppler ultrasound and moreover the presence of a patent foramen ovale (PFO) may be examined for using a validated technique employing this modality. Persistent patent foramen ovale may act as a conduit for embolic material to traverse from the venous to the systemic circulation and consequently affect cerebral function. We wished to 1) investigate the incidence of cerebral microembolisation during primary hybrid total hip arthroplasty and compare this with hip resurfacing, 2) examine the influence of patent foramen ovale on cerebral microembolisation and 3)assess the influence of cerebral microemboli on the outcome of patients undergoing these procedures. We prospectively compared 12 patients undergoing hip resurfacing with 12 patients undergoing hybrid total hip replacement (THR) for the incidence and load of intraoperative cerebral microemboli, using transcranial Doppler. All patients were tested for the presence of a patent foramen ovale using a validated technique. Outcome was assessed using the WOMAC, Harris Hip Score, Oxford Hip Score and EuroQoL quality of life measure. No patient in the hip resurfacing group demonstrated intra-operative cerebral microembolisation. Five patients in the THR group showed transcranial Doppler evidence of microemobli during the procedure. With the small numbers of patients available, there was not a significant difference in microemboli load between the groups (p = 0.09). There was no significant difference between the groups regarding the incidence of PFO (p = 0.78). There was no significant relationship between the incidence and total microemboli load and the incidence of PFO (p = 0.56). There was no significant difference in outcome at six months between patients who demonstrated microemboli and those who did not. The incidence of cerebral microembolisation during hip resurfacing appears to be very low. Although our study demonstrated cerebral microemboli in a significant proportion of patients undergoing primary hybrid THR, the numbers of microemboli were low and the presence of a patent foramen ovale did not influence microemboli incidence or load. Finally, patients who demonstrated cerebral microemboli did not have a worse outcome than patients who did not.


Subject(s)
Arthroplasty, Replacement, Hip/adverse effects , Intracranial Embolism/epidemiology , Intraoperative Complications/epidemiology , Adult , Aged , Arthroplasty, Replacement, Hip/methods , Female , Foramen Ovale, Patent/diagnosis , Foramen Ovale, Patent/epidemiology , Humans , Intracranial Embolism/diagnostic imaging , Male , Middle Aged , Risk Factors , Ultrasonography, Doppler, Transcranial
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