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The world's population is ageing, with the number of those over 60 years expected to represent a fifth of the total population by 2050. Increases in chronic long-term health conditions (LTCs) associated with ageing, and requiring regular but often avoidable medical intervention, are pressurising already overloaded, health and social care systems. Atrial fibrillation (AF) is an LTC, which is most frequently diagnosed in the elderly. An often, asymptomatic condition, AF is associated with a 3- to 5-fold increased risk of severe ischemic stroke. Stroke prevention, with risk-stratified oral anticoagulants (OACs) is the standard recommended care for patients with AF. Stroke avoidance is, however, dependent on persistent adherence to OAC medication, with an adherence rate of >80% considered necessary to achieve optimal health outcomes. Suboptimal adherence to OACs is common, with a third of all AF patients not taking their medication as prescribed. This combined with the short half-life of OACs can result in poor clinical outcomes for patients. Policy makers now consider improving adherence to prescribed medicines for LTCs, a public health priority, to ensure better health outcomes for patients, whilst minimising unnecessary health system costs. Prescribing medicines to treat LTCs, such as AF, is not enough, particularly when the patient may not experience any measurable benefit to the treatment and may instead, experience medication-associated adverse events, including a risk of bleeding. Pharmacists who are experts in medicines management are ideally placed to support medication adherence, to educate, and to improve health outcomes for patients with AF. In this review, I will consider the evidence for poor medication adherence in LTCs and in particular adherence to OACs in patients with AF and highlight the role that pharmacists can play in ensuring optimal adherence and showcase pharmacist-led interventions that effectively address this problem.
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BACKGROUND: Adverse childhood experiences (ACEs) have been implicated in the aetiology of a range of health outcomes, including multimorbidity. In this systematic review and meta-analysis, we aimed to identify, synthesise, and quantify the current evidence linking ACEs and multimorbidity. METHODS: We searched seven databases from inception to 20 July 2023: APA PsycNET, CINAHL Plus, Cochrane CENTRAL, Embase, MEDLINE, Scopus, and Web of Science. We selected studies investigating adverse events occurring during childhood (< 18 years) and an assessment of multimorbidity in adulthood (≥ 18 years). Studies that only assessed adverse events in adulthood or health outcomes in children were excluded. Risk of bias was assessed using the ROBINS-E tool. Meta-analysis of prevalence and dose-response meta-analysis methods were used for quantitative data synthesis. This review was pre-registered with PROSPERO (CRD42023389528). RESULTS: From 15,586 records, 25 studies were eligible for inclusion (total participants = 372,162). The prevalence of exposure to ≥ 1 ACEs was 48.1% (95% CI 33.4 to 63.1%). The prevalence of multimorbidity was 34.5% (95% CI 23.4 to 47.5%). Eight studies provided sufficient data for dose-response meta-analysis (total participants = 197,981). There was a significant dose-dependent relationship between ACE exposure and multimorbidity (p < 0.001), with every additional ACE exposure contributing to a 12.9% (95% CI 7.9 to 17.9%) increase in the odds for multimorbidity. However, there was heterogeneity among the included studies (I2 = 76.9%, Cochran Q = 102, p < 0.001). CONCLUSIONS: This is the first systematic review and meta-analysis to synthesise the literature on ACEs and multimorbidity, showing a dose-dependent relationship across a large number of participants. It consolidates and enhances an extensive body of literature that shows an association between ACEs and individual long-term health conditions, risky health behaviours, and other poor health outcomes.
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Experiências Adversas da Infância , Multimorbidade , Humanos , Experiências Adversas da Infância/estatística & dados numéricos , Criança , Prevalência , Adulto , AdolescenteRESUMO
This article discusses psoriasis with a brief overview of the various types. It considers the symptoms, aetiology and treatment options and hopes to give nurses and non-medical prescribers more confidence in recognising and treating this disease.
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Psoríase , Humanos , Psoríase/enfermagem , Psoríase/tratamento farmacológico , Psoríase/terapiaRESUMO
INTRODUCTION: Delirium and multiple long-term conditions (MLTC) share numerous risk factors and have been shown individually to be associated with adverse outcomes following hospitalisation. However, the extent to which these common ageing syndromes have been studied together is unknown. This scoping review aims to summarise our knowledge to date on the interrelationship between MLTC and delirium. METHODS: Searches including terms for delirium and MLTC in adult human participants were performed in PubMed, EMBASE, Medline, Psycinfo and CINAHL. Descriptive analysis was used to summarise findings, structured according to Synthesis Without Meta-analysis reporting guidelines. RESULTS: After removing duplicates, 5256 abstracts were screened for eligibility, with 313 full-texts sought along with 17 additional full-texts from references in review articles. In total, 140 met inclusion criteria and were included in the final review. Much of the literature explored MLTC as a risk factor for delirium (n = 125). Fewer studies explored the impact of MLTC on delirium presentation (n = 5), duration (n = 3) or outcomes (n = 6) and no studies explored how MLTC impacts the treatment of delirium or whether having delirium increases risk of developing MLTC. The most frequently used measures of MLTC and delirium were the Charlson Comorbidity Index (n = 98/140) and Confusion Assessment Method (n = 81/140), respectively. CONCLUSION: Existing literature largely evaluates MLTC as a risk factor for delirium. Major knowledge gaps identified include the impact of MLTC on delirium treatment and the effect of delirium on MLTC trajectories. Current research in this field is limited by significant heterogeneity in defining both MLTC and delirium.
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Delírio , Adulto , Feminino , Humanos , Masculino , Envelhecimento/psicologia , Doença Crônica , Comorbidade , Delírio/diagnóstico , Delírio/epidemiologia , Delírio/terapia , Delírio/psicologia , Medição de Risco , Fatores de Risco , Fatores de Tempo , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Interventions that use the Health Action Process Approach (HAPA) model show promise for increasing PA frequency, duration, and intensity. However, there is limited understanding of how HAPA model variables have been operationalized for PA interventions in chronic disease to promote behavior change and sustained PA or whether the phase or continuous form of the HAPA model was used. The aim of this scoping review is to describe how the HAPA model variables for PA interventions were operationalized and provide details of implementation. METHOD: We searched five databases to identify studies published between January 1992 and March 2024. We aimed to describe (1) the characteristics of interventions including setting, delivery mode, duration, and content; (2) which HAPA variables were operationalized and the strategies used; and (3) the physical activity measures and outcome effects. RESULTS: The search identified 23 interventions in 30 papers (12 protocols, 3 quasi-experimental studies, and 15 randomized controlled trials (RCTs)). Seven of the 15 RCTs reported significant positive effects of the HAPA model on PA behavior outcomes. Interventions operationalized between three and nine HAPA constructs showed significant variability in how the HAPA model is used in intervention research. PA measures varied from self-report to validated objective instruments. CONCLUSION: We found a lack of clarity in decisions about which HAPA constructs were included in interventions. The wide variability in operationalized HAPA constructs made it challenging to compare interventions. Researchers should provide more detail about intervention design and implementation procedures to enhance transparency.
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Background: General practices are facing challenges such as rising patient demand and difficulties recruiting and retaining general practitioners. Greater use of digital technology has been advocated as a way of mitigating some of these challenges and improving patient access. This includes Digital First Primary Care, when a patient's first contact with primary care is through a digital route, either through a laptop or smartphone. The use of Digital First Primary Care has been expedited since COVID-19. There is little evidence of staff experiences of using Digital First Primary Care with more complex patients, such as those with multiple long-term conditions. Objective: To understand the experiences of those with multiple long-term conditions of Digital First Primary Care from the perspectives of healthcare professionals and stakeholders. Design: This was a qualitative evaluation, comprised of four distinct work packages: Work package 1: Locating the study within the wider context, engaging with literature, and co-designing the study approach and research questions with patients. Work package 2: Interviews with health professionals working across general practice and key expert topic stakeholders, including academics and policy-makers. Work package 3: Analysis of data and generation of themes, and testing findings with patients. Work package 4: Synthesis, reporting and dissemination. Results: The study commenced in January 2021 and in total 28 interviews were conducted with 14 health professionals and 15 stakeholders between January and August 2022. From the perspective of health professionals, Digital First Primary Care approaches could enable patients to speak with a clinician more quickly than traditional approaches. Those with multiple long-term conditions could submit healthcare readings from home, though health professionals felt patients may struggle navigating digital systems not designed to capture the nuances associated with living with multiple conditions. Clinicians expressed preferences for seeing patients face-to-face, particularly those with multiple long-term conditions, to identify non-verbal cues about a patient's health. Digital First Primary Care approaches provided an opportunity for clinicians to engage with the carers of patients living with multiple long-term conditions, yet there were concerns around obtaining consent and confidentiality. There remain debates among stakeholders about the nature and extent to which Digital First Primary Care impacts on staff workload. Limitations: At the time of data collection, general practices were facing considerable pressure to deliver care and respond to the COVID-19 pandemic. While it was originally intended that the study would include interviews with patients with multiple long-term conditions and their carers, none of the general practices that took part in the study were willing and/or able to recruit patients and carers in the time available. Conclusions: The rapid implementation of Digital First Primary Care, at a time of immense pressures, meant there has been little time for considering the impact on patients, including those with multiple long-term conditions. The impacts on care continuity depended largely on how surgeries implemented their approaches. Staff and stakeholders felt that Digital First Primary Care, as an additional route for accessing primary care, could be useful for patients with multiple long-term conditions but not at the expense of face-to-face consultations. Future work: Future research obtaining patient and carer views of digital-first approaches, understanding the impacts on carers and how approaches are designed with patients with more complex conditions in mind, is essential. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 16/138/31) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 21. See the NIHR Funding and Awards website for further award information.
Healthcare professionals want to provide the best primary care in the face of increasing pressures, as well as improve access to care for patients. Digital First Primary Care is one response to this situation, when a patients' first contact with primary care is through a digital route, either through a laptop or smartphone. Online systems allow the patient to provide information to their practice about their symptoms or needs and request a response from a health professional. Our study aimed to understand how Digital First Primary Care works for healthcare professionals providing care to increasing numbers of patients with multiple long-term conditions and their carers. Firstly, we examined the relatively limited existing findings and then interviewed healthcare professionals and key stakeholders experienced in digital approaches within primary care (e.g. from policy organisations, universities and the National Health Service). While we attempted to speak to patients and carers directly, unfortunately the pressures in general practice meant we were unable to do so. However, the study was co-designed with patients. Healthcare professionals and stakeholders felt that patients with multiple long-term conditions faced additional challenges with the use of Digital First Primary Care compared to other patients. For example, they reported difficulties navigating online forms and not being able to speak with a general practitioner who knew them well. There were differing views from healthcare professionals and stakeholders about how far Digital First Primary Care could help staff in general practice and enhance care. For some clinicians, the workload was easier to manage and some simple tasks (e.g. sick notes) could be completed quickly. This could reduce stress for staff and mean more patients could be seen per day. Others felt that the digital system had shortcomings. This could be important for patients with multiple long-term conditions; for example, when a digital form may not fully inform the general practitioner as to the exact nature of the problem, potentially requiring a further follow-up appointment. Health professionals reported that carers of patients with multiple long-term conditions generally liked the new systems as they helped to improve contact with general practice staff. The summary was co-authored by members of the BRACE Patient and Public Involvement group.
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Saúde Digital , Múltiplas Afecções Crônicas , Relações Médico-Paciente , Inglaterra , Múltiplas Afecções Crônicas/terapia , Saúde Digital/normas , Saúde Digital/tendências , Humanos , Medicina Estatal/organização & administração , Medicina Estatal/normas , Medicina Estatal/tendências , Satisfação do Paciente/estatística & dados numéricos , Engajamento do Médico/estatística & dados numéricos , Entrevistas como AssuntoRESUMO
BACKGROUND: Mobile health tools have gained prominence in global health care in recent years. Mobile health (mHealth) interventions have demonstrated their impact on managing healthcare service users' health. A pilot search revealed many systematic reviews on the effectiveness of mobile health tools on service users' health outcomes. However, how the role of healthcare professionals in promoting the adoption of mobile health may lead to improved outcomes needs to be clarified. Therefore, this systematic review aims to synthesise existing systematic reviews that examine both the impact of mobile health interventions on service users' outcomes and the role of healthcare professionals in facilitating the adoption of mobile health solutions. METHODS: Five electronic databases will be searched: EMBASE, CINHAL Plus, MEDLINE, Web of Science, and the Cochrane Library for systematic reviews exploring the impact of mobile health interventions on service users' outcomes and the role of healthcare professionals in facilitating the adoption of mobile health solutions. Systematic reviews published in English dated from January 2015 to June 2024 will be included. Screening and selection of the reviews against inclusion and exclusion criteria will be performed by three independent reviewers, as well as data extraction and quality assessment. DISCUSSION: Current systematic reviews in mHealth have primarily focused on assessing the effectiveness of mHealth interventions for managing a range of conditions. While these reviews provide valuable input into the outcomes for mHealth, more is needed to know about the impact of the involvement of health professions on service users' outcomes when adopting mHealth. This systematic review of systematic reviews aims to bridge this critical gap in the literature by critically appraising and synthesising the evidence of mHealth interventions' impact on service user outcomes and the level of involvement of health professionals. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD 42023414435.
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Revisões Sistemáticas como Assunto , Telemedicina , Humanos , Pessoal de Saúde , Papel Profissional , Ocupações em SaúdeRESUMO
Background: Almost half of the global population face significant challenges from long-term conditions (LTCs) resulting in substantive health and socioeconomic burden. Exercise is a potentially key intervention in effective LTC management. Methods: In this overview of systematic reviews (SRs), we searched six electronic databases from January 2000 to October 2023 for SRs assessing health outcomes (mortality, hospitalisation, exercise capacity, disability, frailty, health-related quality of life (HRQoL), and physical activity) related to exercise-based interventions in adults (aged >18 years) diagnosed with one of 45 LTCs. Methodological quality was assessed using AMSTAR-2. International Prospective Resister of Systematic Reviews (PROSPERO) ID: CRD42022319214. Findings: Forty-two SRs plus three supplementary RCTs were included, providing 990 RCTs in 936,825 people across 39 LTCs. No evidence was identified for six LTCs. Predominant outcome domains were HRQoL (82% of SRs/RCTs) and exercise capacity (66%); whereas disability, mortality, physical activity, and hospitalisation were less frequently reported (≤25%). Evidence supporting exercise-based interventions was identified in 25 LTCs, was unclear for 13 LTCs, and for one LTC suggested no effect. No SRs considered multimorbidity in the delivery of exercise. Methodological quality varied: critically-low (33%), low (26%), moderate (26%), and high (12%). Interpretation: Exercise-based interventions improve HRQoL and exercise capacity across numerous LTCs. Key evidence gaps included limited mortality and hospitalisation data and consideration of multimorbidity impact on exercise-based interventions. Funding: This study was funded by the National Institute for Health and Care Research (NIHR; Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (multimorbidity)-NIHR202020).
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BACKGROUND: Participants in research trials often disclose severe depression symptoms, including thoughts of self-harm and suicidal ideation, in validated self-administered questionnaires such as the Patient Health Questionnaire (PHQ-9). However, there is no standard protocol for responding to such disclosure, and the opportunity to support people at risk is potentially missed. We developed and evaluated a risk assessment protocol for the IBD-BOOST randomised controlled trial (ISRCTN71618461 09/09/2019). METHODS: Participants completed the PHQ-9 at baseline and 6-month and 12-month follow-ups. The trial database automatically alerted the research team to risk assess participants. Trial researchers, trained in the protocol, contacted participants by telephone, completed the risk assessment, and signposted participants to appropriate professional services. RESULTS: Seven hundred eighty participants were randomised in the trial; 41 required risk assessment. One participant declined assessment, so 40 risk assessments were completed. Twenty-four participants were assessed as low-risk and 16 participants as medium-risk, with 12 declaring previous suicide attempts. None were rated as high-risk. Trial participants expressed appreciation for being contacted, and all except two wished to receive information about professional support services. Trial risk assessors reported positive experiences of conducting the risk assessment with suggestions for improvement, which resulted in minor modifications to the protocol. DISCUSSION: Our evaluation demonstrated that it was viable for a research trial team to successfully conduct a risk-assessment protocol for trial participants reporting thoughts of self-harm, with training and support from senior colleagues. Resources are required for training and delivery, but it is not unduly onerous. Trial participants appeared to find completing the assessment acceptable.
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Questionário de Saúde do Paciente , Ideação Suicida , Humanos , Medição de Risco , Feminino , Adulto , Masculino , Fatores de Risco , Pessoa de Meia-Idade , Tentativa de Suicídio/psicologia , Depressão/diagnóstico , Depressão/psicologia , Fatores de Tempo , Valor Preditivo dos Testes , Prevenção do SuicídioRESUMO
BACKGROUND: More women are experiencing pregnancy with two or more long-term health conditions such as hypertension, depression or HIV (MLTC). Care can be complex and include multiple teams, health professionals and services. The type and range of maternity care models for these women and the role of the midwife within such models is unknown. AIM: To provide an overview of the literature on models of care for pregnant, birthing, and postnatal women with MLTC and the role of the midwife. METHODS: We conducted a scoping review guided by the Joanna Briggs Institute scoping review methodology. Five databases MEDLINE, CINAHL Plus, PsycINFO, EMBASE and The Maternity and Infant Care database were searched from inception until August 2022. A total of 3458 titles and abstracts and 56 full text papers were screened independently by two researchers. Data was extracted from five papers and synthesised narratively. FINDINGS: Multidisciplinary care models are described or recommended in all five papers. Midwives have a varied and core role in the multidisciplinary care of women with MLTC. DISCUSSION: Models of care for those with MLTC covered part or all the maternity journey, primarily antenatal and postnatal care. A focus on delivering high-quality holistic care throughout the maternity journey, including postnatally is needed. There is a lack of evidence on how midwifery continuity of care models may impact experiences of care and outcomes for this group. CONCLUSION: There is a lack of empirical evidence on how best to provide midwifery and multi-disciplinary care for those with MLTC and a need for research to understand this. INCLUSIVITY STATEMENT: Our aims refer to 'pregnant, birthing, and postnatal women and birthing people with MLTC'. We acknowledge that not all those accessing maternity services will identify as a woman. We continually strive to ensure that our research and public involvement is inclusive and sensitive to the needs of everyone. Our search terms did not narrow to either women or birthing people specifically and used broad terms of pregnancy, antenatal, prenatal, childbirth and postnatal care. All included papers use the term woman or women throughout therefore, we have used this terminology when describing their findings. Where the term 'woman' is used this should be taken to include women and people who do not identify as women but are pregnant or have given birth. This builds on our Patient and Public Involvement and Engagement work which has highlighted the need to use inclusive language.
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Tocologia , Humanos , Feminino , Gravidez , Gestantes/psicologia , Serviços de Saúde Materna , Cuidado Pré-Natal , Papel do Profissional de Enfermagem , Cuidado Pós-Natal/métodos , Complicações na Gravidez/terapia , Enfermeiros ObstétricosRESUMO
Background: Breastfeeding impacts positively on multiple health outcomes, but < 50% of UK women breastfeed at 8 weeks. Women with long-term conditions face additional challenges in breastfeeding. Objectives: To synthesise global and UK evidence to co-create an implementation and evaluation toolkit for cost-effective breastfeeding support in the NHS. Design: Evidence syntheses with stakeholder engagement. Review methods: Systematic reviews examined effectiveness of breastfeeding support for (1) healthy women and (2) women with long-term conditions using Cochrane Pregnancy and Childbirth Group methods. Mixed-methods systematic reviews synthesised process evaluations of effective breastfeeding support interventions for healthy women and experiences of receiving/providing support for breastfeeding women with long-term conditions. Cross-study synthesis integrated qualitative and quantitative findings. Systematic reviews synthesised evidence on the incremental costs and cost-effectiveness of breastfeeding support following National Institute for Health and Care Excellence guidance. All searches were conducted from May 2021 to October 2022. Stakeholder engagement and toolkit development comprised online discussions, a modified Delphi study, focus groups and four workshops. Participants were 23 stakeholders, 16 parents in the parents' panels, 15 women in the focus groups and 87 stakeholders who attended the workshops. Results: We found considerably more interventions designed for healthy women (review 1) than aimed at women with long-term conditions (reviews 1 and 4); approximately half of the studies were targeted at groups at higher risk of poor breastfeeding outcomes, and the impact of support may be different in these populations. Despite this, studies from review 2 found that women perceived the provision of support as positive, important and needed. Studies from review 5 echoed a range of suggestions from participants regarding potential strategies to improve breastfeeding support, with the most widely reported being the need to acknowledge the role and influence of other sources of support (e.g. partners, family, friends, peers, external professionals, web-based resources) and involving these sources in the provision of breastfeeding support for women with long-term conditions. In reviews 3 and 6, there was uncertainty about the cost-effectiveness of breastfeeding support interventions due to the limited number of studies and lack of good-quality evidence. Limitations: There was a lack of evidence for the effectiveness and cost-effectiveness of breastfeeding interventions in the UK. There was often insufficient information reported about intervention characteristics. Conclusions: 'Breastfeeding only' support probably reduces the number of women stopping any or exclusive breastfeeding. The evidence for 'breastfeeding plus' interventions is less consistent, but these may reduce the number of women stopping exclusive breastfeeding at 4-6 weeks and at 6 months. We found no evidence of differential intervention effects regarding mode of provision or provider. Cost-effectiveness is uncertain due to the lack of good-quality evidence. Key enablers of successful implementation were responsiveness and tailoring of interventions to both women's and supporters' needs. Breastfeeding support as delivered in the included studies probably has little to no effect on breastfeeding outcomes for women with long-term conditions. The mixed-methods synthesis and stakeholder work identified that existing interventions may not address the complex needs of these women. The main study output is a co-produced toolkit to guide implementation and evaluation of breastfeeding support services in the UK. Future work: Evaluation of breastfeeding support for all women, particularly those at risk of poor breastfeeding outcomes (e.g. long-term conditions, deprivation). This could involve tailoring the toolkit to local contexts via implementation and effectiveness studies or using quality improvement studies. Study registration: This study is registered as PROSPERO CRD42022337239, CRD42021229769 and CRD42022374509. The reviews of economic evidence were not registered; however, the review protocol can be accessed via the repository held by Queen's University Belfast Research Portal (https://pure.qub.ac.uk/). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130995) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 20. See the NIHR Funding and Awards website for further award information.
We know that breastfeeding is good for the health of mothers and babies, yet many mothers experience difficulties and stop breastfeeding before they want to. This is noticeable among women living in disadvantaged areas where there are low rates of breastfeeding. Good support may help women overcome difficulties so that they can continue to breastfeed. Women with chronic illnesses such as diabetes and depression face additional challenges in breastfeeding. We wanted to understand how to improve breastfeeding support for UK women. We brought together previous scientific studies to learn about what works. We also spoke with parents and service providers. We combined all our findings into a toolkit to help the NHS improve breastfeeding support for women. We found that, for healthy women, some forms of breastfeeding support can probably help reduce the number of women stopping breastfeeding and help them breastfeed exclusively. For women with chronic illnesses, we found that the types of support used in the studies probably did not help women to breastfeed. Most of the evidence did not come from the UK. We identified barriers to providing breastfeeding support for all women, especially those who are disadvantaged. We identified strategies that could help the NHS overcome these barriers. There was a lack of evidence on how cost-effective these interventions are compared with usual care, but parents and providers saw the value of paying for breastfeeding support. Giving women targeted breastfeeding support will help them to breastfeed; however, we need to test if this support works in the NHS. We also need to develop additional services for women with chronic illnesses. The NHS could use our findings to improve support for all breastfeeding women by identifying specific barriers and using evidence-based strategies to overcome them.
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Aleitamento Materno , Participação dos Interessados , Humanos , Feminino , Reino Unido , Análise Custo-Benefício , Apoio Social , Medicina Estatal , GravidezRESUMO
Background: People living with multiple long-term conditions represent a significant concern for National Health Service policy and practice, and their care is a major theme in the 2019 National Health Service Long Term Plan. The Birmingham RAND and Cambridge Rapid Evaluation Centre team has undertaken a thematic synthesis of the 10 evaluations it has conducted from 2018 to 2023, exploring the needs, priorities and implications for people with multiple long-term conditions. Objectives: The aims for this overarching study were to: (1) build a body of learning about service innovations in primary and community settings for people of all ages with multiple long-term conditions, focused on questions that matter most to people with multimorbidity; and (2) develop methodological insights about how rapid evaluation can be used to inform the scoping, testing and implementation of service innovations for people with multiple long-term conditions. Design: The focus on multiple long-term conditions came from a Birmingham RAND and Cambridge Rapid Evaluation Centre prioritisation process undertaken in 2018 using James Lind Alliance methods. Cross-analysis of the findings from the 10 individual rapid evaluations was supplemented by (1) building aspects of multimorbidity into the design of later evaluations; (2) interviewing national and regional stakeholders (n=19) working in or alongside integrated care systems; (3) undertaking a rapid review of evidence on remote monitoring for people with multiple long-term conditions (19 papers included); and (4) testing overall insights with organisations representing patients and carers through a patient, public and professional engagement workshop with 10 participants plus members of the research team. Results: While living with multiple long-term conditions is common and is the norm for people over the age of 50 using health and care services, it is not often a focus of health service provision or innovation, nor of research and evaluation activity. We discuss six themes emerging from the totality of the study: (1) our health system is mainly organised around single conditions and not multiple long-term conditions; (2) research calls and studies usually focus on single conditions and associated services; (3) building opportunities for engaged, informed individuals and carers and improved self-management; (4) the importance of measures that matter for patients and carers; (5) barriers to developing and implementing service innovations for people with multiple long-term conditions; and (6) what is needed to make patients with multiple long-term conditions a priority in healthcare planning and delivery. Limitations: Care of people with multiple long-term conditions was not the principal focus of several of the rapid evaluations. While this was a finding in itself, it limited our learning about designing and implementing, as well as methodological approaches to evaluating, service innovations for people with multiple long-term conditions. Conclusions: Through a thematic analysis of the portfolio of evaluations, we have deduced a set of suggested implications for how the needs of people with multiple long-term conditions can be better embedded in policy, research and practice. Future work: Areas of uncertainty related to the care of people with multiple long-term conditions should be further explored, including developing and testing measures of patient experience of (un)co-ordinated care across settings, and interrogating the experience of health and care staff when working with people with multiple long-term conditions, to understand what works. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR134284) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 15. See the NIHR Funding and Awards website for further award information.
Many people in England live with two or more physical and/or mental health conditions that are expected to last for years. Estimates vary, but it is likely that a majority of National Health Service services are serving people living with two or more long-term conditions. We wanted to find out how well the needs of this group are taken into account when new types of health care are introduced, or existing services are reorganised. To do this, we went back to all 10 of the health service innovations that had been studied by our Birmingham RAND and Cambridge Evaluation Centre from 2018 to 2023. We did some extra research, including discussions with patient representatives and interviews with National Health Service policy-makers and managers at national and regional levels. We also looked at what new research had been published about one example of a new healthcare technology that is intended to help people who have several long-term health conditions: monitors that can be used by health service staff to measure patients' symptoms when they are in their own home. Our main finding was that most National Health Service attention is given to organising care for single conditions, often treating them in isolation. Patients' many treatments and needs are not routinely considered all at the same time by healthcare staff, nor by researchers. Care for one condition is too often not co-ordinated with care for other health problems that a patient may have. Although the situation of people living with several long-term health conditions is in principle understood by healthcare staff, managers and researchers, relatively little is done in practice to meet their needs. We conclude by suggesting ways that policy-makers, healthcare staff and researchers could improve how they help people living with multiple long-term conditions.
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Medicina Estatal , Humanos , Medicina Estatal/organização & administração , Múltiplas Afecções Crônicas/terapia , Múltiplas Afecções Crônicas/epidemiologia , Multimorbidade , Reino Unido , Doença Crônica/terapiaRESUMO
BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.
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Cuidadores , Transtornos Mentais , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Doença Crônica , Adulto , Grupos Focais , Inglaterra , Entrevistas como Assunto , IdosoRESUMO
INTRODUCTION: Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy. METHODS: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. RESULTS: Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. CONCLUSION: Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. PATIENT OR PUBLIC CONTRIBUTION: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.
Assuntos
Entrevistas como Assunto , Humanos , Feminino , Gravidez , Adulto , Reino Unido , Pesquisa Qualitativa , Múltiplas Afecções Crônicas/terapia , Gestantes/psicologia , Pessoal de Saúde/psicologia , Complicações na GravidezRESUMO
OBJECTIVE: The objective of this systematic review and meta-analysis was to evaluate the effectiveness of social prescribing interventions in the management of long-term conditions in adults. DATA SOURCES: Eleven electronic databases were searched for randomised and quasi-randomised controlled trials. REVIEW METHODS: Outcomes of interest were quality of life, physical activity, psychological well-being and disease-specific measures. Bias was assessed with the Cochrane Risk of Bias 2 tool. A narrative synthesis and meta-analysis were performed. RESULTS: Twelve studies (n = 3566) were included in this review. Social prescribing interventions were heterogeneous and the most common risks of bias were poor blinding and high attrition. Social prescribing interventions designed to target specific long-term conditions i.e., cancer and diabetes demonstrated significant improvements in quality of life (n = 2 studies) and disease-specific psychological outcomes respectively (n = 3 studies). There was some evidence for improvement in physical activity (n = 2 studies) but most changes were within group only (n = 4 studies). Social prescribing interventions did not demonstrate any significant changes in general psychological well-being. CONCLUSION: Social prescribing interventions demonstrated some improvements across a range of outcomes although the quality of evidence remains poor.
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PURPOSE: Despite a high prevalence of fatigue and its importance to patients, many people with long-term conditions do not receive fatigue management as part of their treatment. This review is aimed to identify clinical guidance for the management of fatigue in long-term physical health conditions. METHODS: A systematic mapping review was conducted in accordance with Social Care Institute for Excellence systematic review guidance. Bibliographic databases and guideline repositories were searched for clinical guidelines for long-term conditions, published between January 2008 and July 2018, with a search for updates conducted in May 2023. Data were extracted on the recommendations made for managing fatigue and, where cited, the underlying research evidence used to support these recommendations was also extracted. RESULTS: The review included 221 guidelines on 67 different long-term conditions. Only 30 (13.6%) of the guidelines contained recommendations for managing fatigue. These were categorised as clinical (e.g. conduct further investigations), pharmacological, behavioural (e.g. physical activity), psychological, nutritional, complementary, environmental, and multicomponent. The guidelines rated much of the evidence for fatigue management as fairly low quality, highlighting the need to develop and test fatigue-management strategies in high-quality trials. CONCLUSION: This review highlights that management of fatigue is a very important neglected area in the clinical guidelines for managing long-term conditions.
Fatigue is a common and debilitating symptom of many long-term physical health conditions; however, many people do not receive treatment for fatigue.This mapping review found that very few clinical guidelines contain recommendations for managing fatigue, even where published evidence exists.It is essential that developers of clinical guidelines address this important neglected area.
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Adaptation seeks to transfer and implement healthcare interventions developed and evaluated in one context to another. The aim of this scoping review was to understand current approaches to the adaptation of complex interventions for people with long-term conditions (LTCs) and to identify issues for studies performed in low- and middle-income countries (LMICs). Bibliographic databases were searched from 2000 to October 2022. This review involved five stages: (i) definition of the research question(s); (ii) identifying relevant studies; (iii) study selection; (iv) data charting; and (v) data synthesis. Extraction included an assessment of the: rationale for adaptation; stages and levels of adaptation; use of theoretical frameworks, and quality of reporting using a checklist based on the 2021 ADAPT guidance. Twenty-five studies were included from across 21 LTCs and a range of complex interventions. The majority (16 studies) focused on macro (national or international) level interventions. The rationale for adaptation included intervention transfer across geographical settings [high-income country (HIC) to LMIC: six studies, one HIC to another: eight studies, one LMIC to another: two studies], or transfer across socio-economic/racial groups (five studies), or transfer between different health settings within a single country (one study). Overall, studies were judged to be of moderate reporting quality (median score 23, maximum 46), and typically focused on early stages of adaptation (identification and development) with limited outcome evaluation or implementation assessment of the adapted version of the intervention. Improved reporting of the adaptation for complex interventions targeted at LTCs is needed. Development of future adaptation methods guidance needs to consider the needs and priorities of the LMIC context.
Limited finance and human capacity may reduce access to new treatments for people with long-term conditions. This is especially true in low- and middle-income countries. One solution is to transfer treatments developed in one place for use in other areas. This paper provides a current summary of international research on adapting treatments. We used a checklist to assess study reporting quality, based on published advice. Our findings showed the need for better conduct and reporting of adaptation. Future guidance should consider the specific needs of low- and middle-income countries.
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OBJECTIVE: Natural language processing (NLP) algorithms are increasingly being applied to obtain unsupervised representations of electronic health record (EHR) data, but their comparative performance at predicting clinical endpoints remains unclear. Our objective was to compare the performance of unsupervised representations of sequences of disease codes generated by bag-of-words versus sequence-based NLP algorithms at predicting clinically relevant outcomes. MATERIALS AND METHODS: This cohort study used primary care EHRs from 6 286 233 people with Multiple Long-Term Conditions in England. For each patient, an unsupervised vector representation of their time-ordered sequences of diseases was generated using 2 input strategies (212 disease categories versus 9462 diagnostic codes) and different NLP algorithms (Latent Dirichlet Allocation, doc2vec, and 2 transformer models designed for EHRs). We also developed a transformer architecture, named EHR-BERT, incorporating sociodemographic information. We compared the performance of each of these representations (without fine-tuning) as inputs into a logistic classifier to predict 1-year mortality, healthcare use, and new disease diagnosis. RESULTS: Patient representations generated by sequence-based algorithms performed consistently better than bag-of-words methods in predicting clinical endpoints, with the highest performance for EHR-BERT across all tasks, although the absolute improvement was small. Representations generated using disease categories perform similarly to those using diagnostic codes as inputs, suggesting models can equally manage smaller or larger vocabularies for prediction of these outcomes. DISCUSSION AND CONCLUSION: Patient representations produced by sequence-based NLP algorithms from sequences of disease codes demonstrate improved predictive content for patient outcomes compared with representations generated by co-occurrence-based algorithms. This suggests transformer models may be useful for generating multi-purpose representations, even without fine-tuning.