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OBJECTIVES: Provision of personalised care planning is a national priority for people with dementia. Research suggests a lack of quality and consistency of care plans and reviews. The PriDem model of care was developed to deliver feasible and acceptable primary care-based postdiagnostic dementia care. We aimed to increase the adoption of personalised care planning for people with dementia, exploring implementation facilitators and barriers. DESIGN: Mixed-method feasibility and implementation study. SETTING: Seven general practices from four primary care networks (PCNs) in the Northeast and Southeast of England. PARTICIPANTS: A medical records audit collected data on 179 community-dwelling people with dementia preintervention, and 215 during the intervention year. The qualitative study recruited 26 health and social care professionals, 14 people with dementia and 16 carers linked to participating practices. INTERVENTION: Clinical dementia leads (CDL) delivered a 12-month, systems-level intervention in participating PCNs, to develop care systems, build staff capacity and capability, and deliver tailored care and support to people with dementia and their carers. PRIMARY AND SECONDARY OUTCOME MEASURES: Adoption of personalised care planning was assessed through a preintervention and postintervention audit of medical records. Implementation barriers and facilitators were explored through semistructured qualitative interviews and non-participant observation, analysed using codebook thematic analysis informed by Normalisation Process Theory. RESULTS: The proportion of personalised care plans increased from 37.4% (95% CI 30.3% to 44.5%) preintervention to 64.7% (95% CI 58.3% to 71.0%) in the intervention year. Qualitative findings suggest that the flexible nature of the PriDem intervention enabled staff to overcome contextual barriers through harnessing the skills of the wider multidisciplinary team, delivering increasingly holistic care to patients. CONCLUSIONS: Meaningful personalised care planning can be achieved through a team-based approach. Although improved guidelines for care planning are required, commissioners should consider the benefits of a CDL-led approach. TRIAL REGISTRATION NUMBER: ISRCTN11677384.
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Demência , Estudos de Viabilidade , Planejamento de Assistência ao Paciente , Atenção Primária à Saúde , Pesquisa Qualitativa , Humanos , Demência/terapia , Atenção Primária à Saúde/organização & administração , Inglaterra , Masculino , Feminino , Planejamento de Assistência ao Paciente/organização & administração , Idoso , Cuidadores , Medicina de Precisão/métodos , Idoso de 80 Anos ou mais , Acessibilidade aos Serviços de Saúde/organização & administração , Pessoa de Meia-IdadeRESUMO
OBJECTIVES: To evaluate the feasibility and acceptability of a primary care-based intervention for improving post-diagnostic dementia care and support (PriDem), and implementation study procedures. DESIGN: A non-randomised, mixed methods, feasibility study. SETTING: Seven general practices from four primary care networks (PCNs) in the Northeast and Southeast of England. PARTICIPANTS: We aimed to recruit 80 people with dementia (PWD) and 66 carers INTERVENTION: Clinical Dementia Leads delivered a 12-month intervention in participating PCNs, to develop care systems, build staff capacity and capability, and deliver tailored care and support to PWD and carers. OUTCOMES: Recruitment and retention rates were measured. A mixed methods process evaluation evaluated feasibility and acceptability of the intervention and study procedures. Using electronic care records, researchers extracted service use data and undertook a dementia care plan audit, preintervention and postintervention, assessing feasibility of measuring the primary implementation outcome: adoption of personalised care planning by participating general practices. Participants completed quality of life, and service use measures at baseline, 4 and 9 months. RESULTS: 60 PWD (75% of recruitment target) and 51 carers (77% of recruitment target) were recruited from seven general practices across four PCNs. Retention rate at 9 months was 70.0% of PWD and 76.5% of carers. The recruitment approach showed potential for including under-represented groups within dementia. Despite implementation challenges, the intervention was feasible and acceptable, and showed early signs of sustainability. Study procedures were feasible and accessible, although researcher capacity was crucial. Participants needed time and support to engage with the study. Care plan audit procedures were feasible and acceptable. CONCLUSIONS: The PriDem model is an acceptable and feasible intervention. A definitive study is warranted to fully inform dementia care policy and personalised dementia care planning guidance. Successful strategies to support inclusion of PWD and their carers in future research were developed. TRIAL REGISTRATION NUMBER: ISRCTN11677384.
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Cuidadores , Demência , Estudos de Viabilidade , Atenção Primária à Saúde , Humanos , Demência/diagnóstico , Demência/terapia , Feminino , Idoso , Masculino , Inglaterra , Idoso de 80 Anos ou mais , Qualidade de Vida , Pessoa de Meia-IdadeRESUMO
INTRODUCTION: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis. METHODS: The PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion. RESULTS: To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. CONCLUSION: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society. PATIENT OR PUBLIC CONTRIBUTION: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.
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Demência , Minorias Sexuais e de Gênero , Feminino , Humanos , Pacientes , Grupos Minoritários , Participação do Paciente , Demência/diagnóstico , Demência/terapiaRESUMO
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.
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OBJECTIVES: To describe the population presenting to out-of-hours primary care with insect bites, establish their clinical management and the factors associated with antibiotic prescribing. DESIGN: An observational study using routinely collected data from a large out-of-hours database (BORD, Birmingham Out-of-hours general practice Research Database). SETTING: A large out-of-hour primary care provider in the Midlands region of England. PARTICIPANTS: All patients presenting with insect bites between July 2013 and February 2020 were included comprising 5774 encounters. OUTCOME MEASURES: This cohort was described, and a random subcohort was created for more detailed analysis which established the clinical features of the presenting insect bites. Logistic regression was used to model variables associated with antibiotic prescribing. RESULTS: Of the 5641 encounters solely due to insect bites, 67.1% (95% CI 65.8% to 68.3%) were prescribed antibiotics. General practitioners were less likely to prescribe antibiotics than advanced nurse practitioners (60.5% vs 71.1%, p<0.001) and there was a decreasing trend in antibiotic prescribing as patient deprivation increased. Pain (OR 2.13, 95% CI 1.18 to 3.86), swelling (OR 2.88, 95% CI 1.52 to 5.46) and signs of spreading (OR 3.45, 95% CI 1.54 to 7.70) were associated with an increased frequency of antibiotic prescribing. Extrapolation of the findings give an estimated incidence of insect bite consultations in England of 1.5 million annually. CONCLUSION: Two-thirds of the patients presenting to out-of-hours primary care with insect bites receive antibiotics. While some predictors of prescribing have been found, more research is required to understand the optimal use of antibiotics for this common presentation.
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Plantão Médico , Mordeduras e Picadas de Insetos , Humanos , Mordeduras e Picadas de Insetos/terapia , Antibacterianos/uso terapêutico , Bases de Dados Factuais , Atenção Primária à SaúdeRESUMO
INTRODUCTION: Care is often inadequate and poorly integrated after a dementia diagnosis. Research and policy highlight the unaffordability and unsustainability of specialist-led support, and instead suggest a task-shared model, led by primary care. This study is part of the PriDem primary care led postdiagnostic dementia care research programme and will assess delivery of an evidence-informed, primary care based, person-centred intervention. The intervention involves Clinical Dementia Leads (CDLs) working in primary care to develop effective dementia care systems that build workforce capacity and support teams to deliver tailored support to people living with dementia and their carers. METHODS AND ANALYSIS: This is a 15-month mixed-methods feasibility and implementation study, situated in four National Health Service (NHS) primary care networks in England. The primary outcome is adoption of personalised care planning by participating general practices, assessed through a patient records audit. Feasibility outcomes include recruitment and retention; appropriateness and acceptability of outcome measures; acceptability, feasibility and fidelity of intervention components. People living with dementia (n=80) and carers (n=66) will be recruited through participating general practices and will complete standardised measures of health and well-being. Participant service use data will be extracted from electronic medical records. A process evaluation will explore implementation barriers and facilitators through methods including semistructured interviews with people living with dementia, carers and professionals; observation of CDL engagement with practice staff; and a practice fidelity log. Process evaluation data will be analysed qualitatively using codebook thematic analysis, and quantitatively using descriptive statistics. Economic analysis will determine intervention cost-effectiveness. ETHICS AND DISSEMINATION: The study has received favourable ethical opinion from Wales REC4. NHS Confidentiality Advisory Group support allows researchers preconsent access to patient data. Results will inform intervention adaptations and a future large-scale evaluation. Dissemination through peer-review journals, engagement with policy-makers and conferences will inform recommendations for dementia services commissioning. TRIAL REGISTRATION NUMBER: ISRCTN11677384.
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Demência , Medicina Estatal , Humanos , Estudos de Viabilidade , Aclimatação , Atenção Primária à Saúde , Demência/diagnóstico , Demência/terapiaRESUMO
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.
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Farmacêuticos , Projetos de Pesquisa , Humanos , Idoso , Políticas , Atenção Primária à Saúde , Reino Unido , Literatura de Revisão como AssuntoRESUMO
BACKGROUND: Insect bite inflammation may mimic cellulitis and promote unnecessary antibiotic usage, contributing to antimicrobial resistance in primary care. We wondered how general practice clinicians assess and manage insect bites, diagnose cellulitis, and prescribe antibiotics. METHOD: This is a Quality Improvement study in which 10 general practices in England and Wales investigated patients attending for the first time with insect bites between April and September 2021 to their practices. Mode of consultation, presentation, management plan, and reattendance or referral were noted. Total practice flucloxacillin prescribing was compared to that for insect bites. RESULTS: A combined list size of 161,346 yielded 355 insect bite consultations. Nearly two-thirds were female, ages 3-89 years old, with July as the peak month and a mean weekly incidence of 8 per 100,000. GPs still undertook most consultations; most were phone consultations, with photo support for over half. Over 40% presented between days 1 and 3 and common symptoms were redness, itchness, pain, and heat. Vital sign recording was not common, and only 22% of patients were already taking an antihistamine despite 45% complaining of itch. Antibiotics were prescribed to nearly three-quarters of the patients, mainly orally and mostly as flucloxacillin. Reattendance occurred for 12% and referral to hospital for 2%. Flucloxacillin for insect bites contributed a mean of 5.1% of total practice flucloxacillin prescriptions, with a peak of 10.7% in July. CONCLUSIONS: Antibiotics are likely to be overused in our insect bite practice and patients could make more use of antihistamines for itch before consulting.
It can be difficult to know if redness, heat, swelling, and pain from insect bites are due to inflammation or infection. Prescribing unnecessary antibiotics may result in germs becoming resistant to antibiotics when needed. Ten general practices in England and Wales investigated their management of insect bites in the 6 months of April to September 2021 inclusive. There were 355 bites; women presented more often than men, and ages were from 3 to 89 years old, half of them were 3069 years old. People mainly consulted their GP by phone with photos of their bites. Key symptoms were redness, itchness, heat, and pain. More people had itch than were taking antihistamines or using steroid cream. Most people (nearly 7 out of 10) were prescribed an oral antibiotic, usually flucloxacillin, which accounted for about 5% of total flucloxacillin prescribed in the practices. Only 2 in 100 people needed further hospital care. It is likely that general practice clinicians are over-using antibiotics for insect bites and that home management before seeking medical help with painkillers, antihistamines, and steroid creams could be used more. Now that we have baseline data, there is a need to set up studies to prove that these reduce antibiotic usage.
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Medicina Geral , Mordeduras e Picadas de Insetos , Humanos , Feminino , Pré-Escolar , Criança , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Masculino , Floxacilina/uso terapêutico , Mordeduras e Picadas de Insetos/tratamento farmacológico , Celulite (Flegmão)/tratamento farmacológico , Celulite (Flegmão)/epidemiologia , Reino Unido , Antibacterianos/uso terapêutico , Padrões de Prática MédicaRESUMO
BACKGROUND: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers. METHODS: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners. RESULTS: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support. CONCLUSION: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally.
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COVID-19 , Demência , Humanos , Cuidadores , Pandemias , Demência/diagnóstico , Demência/terapia , Atenção Primária à Saúde , Teste para COVID-19RESUMO
BACKGROUND: Acne vulgaris is a common skin condition that may cause psychosocial distress. There is evidence that topical treatment combinations, chemical peels and photochemical therapy (combined blue/red light) are effective for mild-to-moderate acne, while topical treatment combinations, oral antibiotics combined with topical treatments, oral isotretinoin and photodynamic therapy are most effective for moderate-to-severe acne. Effective treatments have varying costs. The National Institute for Health and Care Excellence (NICE) in England considers cost-effectiveness when producing national clinical, public health and social care guidance. AIM: To assess the cost-effectiveness of treatments for mild-to-moderate and moderate-to-severe acne to inform relevant NICE guidance. METHODS: A decision-analytical model compared costs and quality-adjusted life-years (QALYs) of effective topical pharmacological, oral pharmacological, physical and combined treatments for mild-to-moderate and moderate-to-severe acne, from the perspective of the National Health Service in England. Effectiveness data were derived from a network meta-analysis. Other model input parameters were based on published sources, supplemented by expert opinion. RESULTS: All of the assessed treatments were more cost-effective than treatment with placebo (general practitioner visits without active treatment). For mild-to-moderate acne, topical treatment combinations and photochemical therapy (combined blue/red light) were most cost-effective. For moderate-to-severe acne, topical treatment combinations, oral antibiotics combined with topical treatments, and oral isotretinoin were the most cost-effective. Results showed uncertainty, as reflected in the wide confidence intervals around mean treatment rankings. CONCLUSION: A range of treatments are cost-effective for the management of acne. Well-conducted studies are needed to examine the long-term clinical efficacy and cost-effectiveness of the full range of acne treatments.
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Acne Vulgar , Isotretinoína , Humanos , Acne Vulgar/tratamento farmacológico , Antibacterianos/uso terapêutico , Análise Custo-Benefício , Isotretinoína/uso terapêutico , Medicina EstatalRESUMO
BACKGROUND: Various treatments for acne vulgaris exist, but little is known about their comparative effectiveness in relation to acne severity. OBJECTIVES: To identify best treatments for mild-to-moderate and moderate-to-severe acne, as determined by clinician-assessed morphological features. METHODS: We undertook a systematic review and network meta-analysis of randomized controlled trials (RCTs) assessing topical pharmacological, oral pharmacological, physical and combined treatments for mild-to-moderate and moderate-to-severe acne, published up to May 2020. Outcomes included percentage change in total lesion count from baseline, treatment discontinuation for any reason, and discontinuation owing to side-effects. Risk of bias was assessed using the Cochrane risk-of-bias tool and bias adjustment models. Effects for treatments with ≥ 50 observations each compared with placebo are reported below. RESULTS: We included 179 RCTs with approximately 35 000 observations across 49 treatment classes. For mild-to-moderate acne, the most effective options for each treatment type were as follows: topical pharmacological - combined retinoid with benzoyl peroxide (BPO) [mean difference 26·16%, 95% credible interval (CrI) 16·75-35·36%]; physical - chemical peels, e.g. salicylic or mandelic acid (39·70%, 95% CrI 12·54-66·78%) and photochemical therapy (combined blue/red light) (35·36%, 95% CrI 17·75-53·08%). Oral pharmacological treatments (e.g. antibiotics, hormonal contraceptives) did not appear to be effective after bias adjustment. BPO and topical retinoids were less well tolerated than placebo. For moderate-to-severe acne, the most effective options for each treatment type were as follows: topical pharmacological - combined retinoid with lincosamide (clindamycin) (44·43%, 95% CrI 29·20-60·02%); oral pharmacological - isotretinoin of total cumulative dose ≥ 120 mg kg-1 per single course (58·09%, 95% CrI 36·99-79·29%); physical - photodynamic therapy (light therapy enhanced by a photosensitizing chemical) (40·45%, 95% CrI 26·17-54·11%); combined - BPO with topical retinoid and oral tetracycline (43·53%, 95% CrI 29·49-57·70%). Topical retinoids and oral tetracyclines were less well tolerated than placebo. The quality of included RCTs was moderate to very low, with evidence of inconsistency between direct and indirect evidence. Uncertainty in findings was high, in particular for chemical peels, photochemical therapy and photodynamic therapy. However, conclusions were robust to potential bias in the evidence. CONCLUSIONS: Topical pharmacological treatment combinations, chemical peels and photochemical therapy were most effective for mild-to-moderate acne. Topical pharmacological treatment combinations, oral antibiotics combined with topical pharmacological treatments, oral isotretinoin and photodynamic therapy were most effective for moderate-to-severe acne. Further research is warranted for chemical peels, photochemical therapy and photodynamic therapy for which evidence was more limited. What is already known about this topic? Acne vulgaris is the eighth most common disease globally. Several topical, oral, physical and combined treatments for acne vulgaris exist. Network meta-analysis (NMA) synthesizes direct and indirect evidence and allows simultaneous inference for all treatments forming an evidence network. Previous NMAs have assessed a limited range of treatments for acne vulgaris and have not evaluated effectiveness of treatments for moderate-to-severe acne. What does this study add? For mild-to-moderate acne, topical treatment combinations, chemical peels, and photochemical therapy (combined blue/red light; blue light) are most effective. For moderate-to-severe acne, topical treatment combinations, oral antibiotics combined with topical treatments, oral isotretinoin and photodynamic therapy (light therapy enhanced by a photosensitizing chemical) are most effective. Based on these findings, along with further clinical and cost-effectiveness considerations, National Institute for Health and Care Excellence (NICE) guidance recommends, as first-line treatments, fixed topical treatment combinations for mild-to-moderate acne and fixed topical treatment combinations, or oral tetracyclines combined with topical treatments, for moderate-to-severe acne.
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Acne Vulgar , Isotretinoína , Humanos , Isotretinoína/uso terapêutico , Metanálise em Rede , Acne Vulgar/tratamento farmacológico , Acne Vulgar/induzido quimicamente , Antibacterianos/uso terapêutico , TetraciclinaRESUMO
Background Rates of oropharyngeal (OP) cancer are increasing and mortality is related to stage at diagnosis. Early diagnosis is vital to improving patient outcomes.Aim To describe current general practice pathways and time intervals in OP cancer and: a) compare to current National Institute for Health and Care Excellence guidance to refer from general practitioners (GPs) to general medical dentists (dentists); and b) referral pathways for pharyngeal cancers.Design and setting A ten-year retrospective study of patients diagnosed with OP cancer in one suburban general practice in England using GP notes, including secondary care correspondence.Results There were 12 cases of OP cancer; six oral and six pharyngeal. There were marked differences in referral pathways and time intervals for people with visible, or palpable, oral cancers and those with non-visible, or impalpable, pharyngeal cancers. No one had GP to dentist referral. General practice 'safety-netting' or follow-up was not commonly recorded.Conclusion GPs are pivotal in diagnosing symptomatic OP cancers. General practice and dental teams encountering symptoms of uncertain aetiology (for example, pharyngitis) should offer safety-netting to shorten patient intervals to re-attendance. Pathways for oral cancer referral were usually clear and linear. Pathways for pharyngeal cancer were usually complex, with much longer time intervals in primary and secondary care, and would benefit from a single national referral pathway to ENT.
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BACKGROUND: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. METHODS: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. RESULTS: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. CONCLUSIONS: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.
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COVID-19 , Demência , Cuidadores , Controle de Doenças Transmissíveis , Demência/diagnóstico , Demência/epidemiologia , Inglaterra/epidemiologia , Humanos , Pandemias , SARS-CoV-2RESUMO
BACKGROUND: COVID-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of health care needs to be informed by vulnerable populations, such as people living with dementia. AIM: To understand the remote healthcare experiences of patients living with dementia and their family carers during the COVID-19 pandemic. DESIGN AND SETTING: Qualitative interviews with community-based patients living with dementia and their carers were carried out between May-August 2020, while the COVID-19 pandemic was ongoing in England. METHOD: Semi-structured interviews were conducted remotely by telephone or video call with 30 patients living with dementia and 31 carers. Data were analysed using thematic analysis. RESULTS: Three main themes were derived relating to: proactive care at the onset of COVID-19 restrictions; avoidance of healthcare settings and services; and difficulties with remote healthcare encounters. People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimise COVID-19 risk or reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging difficulties, rescheduling/missed calls, and inclusion of the voice of the person with dementia. CONCLUSION: While remote consultations could be effective, proactive calls could be more structured around needs. Consideration should be given to replace non-verbal prompts to describe problems, particularly for new health concerns. In continuing remote consultations, it is important to facilitate engagement with patients living with dementia and their carers to ensure good practice.
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COVID-19 , Demência , Consulta Remota , Cuidadores , Demência/epidemiologia , Demência/terapia , Inglaterra/epidemiologia , Humanos , Pandemias , Atenção Primária à Saúde , SARS-CoV-2RESUMO
BACKGROUND: Many qualitative studies report the post-diagnostic care experiences of carers and people living with dementia; however, this is not often accompanied by opportunities to hear the corresponding views of their health care professionals and how this triadic relationship functions. The aim of this review was to identify and thematically synthesize the experiences of health care services reported by people living with dementia, their carers and health care professionals. METHODS: Medline, PsycINFO, Embase and CINAHL were searched from inception to 31 July 2019 for qualitative research including people living with dementia, carers and health care professionals. Data were coded and thematically synthesised using NVivo. RESULTS: Of 10,045 search results, 29 papers relating to 27 studies were included in the final synthesis, including 261 people living with dementia, 444 carers and 530 health care professionals. Six themes emerged related to the functioning of a dementia care triad: (1) involving the person living with dementia, (2) establishing expectations of care and the roles of the members of the triad, (3) building trust, (4) effective communication, (5) continuity of care and (6) understanding the unique relationship dynamics within each triad. DISCUSSION: The interactions and complexity of triadic dementia care relationships further our understanding of how to improve dementia care. Awareness of possible diverging attitudes highlights areas of necessary improvement and further research into facilitating engagement, such as when multiple professionals are involved or where there are mismatched expectations of the roles of triad members. In order to operate efficiently as a triad member, professionals should be aware of how pre-existing relations can influence the composition of a triad, encourage the involvement of the person living with dementia, clarify the expectations of all parties, establish trusting relationships and enable communication within the direct triad and beyond.
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Cuidadores , Demência , Idoso , Idoso de 80 Anos ou mais , Atenção à Saúde , Etnicidade , Pessoal de Saúde , Humanos , Grupos Minoritários , Medicina EstatalRESUMO
OBJECTIVES: Concentrating post-diagnostic dementia care in primary care may lead to better and more cost-effective care closer to home. We aimed to assess which intervention components and contextual factors may contribute to the successful delivery and implementation of primary care-led post-diagnostic dementia care. METHODS: Mixed-methods systematic review. We searched five databases (inception-March 2019) with reference list screening and citation tracking. We included studies evaluating post-diagnostic dementia care interventions where primary care had a significant role in dementia care, which assessed one or more implementation elements (acceptability, feasibility, adoption, sustainability, reach, costs, appropriateness or fidelity). Two authors independently critically appraised studies. RESULTS: Out of 4528 unique references, we screened 380 full texts and included 49 evaluations of services collecting implementation process data. Most services had high acceptability ratings. The most acceptable components were information provision, social and emotional support and links to community organisations. Feasibility was chiefly influenced by provider engagement and leadership, building dementia care capacity, sufficient resources/funding and collaboration. Care quality was maximised through adding capacity from a dementia-specific health professional. On the basis of limited data, costs for various primary care-led models did not substantially differ from each other. CONCLUSION: A range of primary care-led dementia care models appear feasible and acceptable. Future services should: add dementia-focussed health professionals into primary care, develop primary care leadership and provide sufficient funding and collaboration opportunities. Information, community service links and social and ongoing support should be part of services. Further exploration of service reach and formalised fidelity assessment are needed.