P. Clarkson, D. Challis, J. Hughes, B. Roe, L. Davies, I. Russell, M. Orrell, F. Poland, D. Jolley, N. Kapur, Catherine A. Robinson, Helen Chester, S. Davies, C. Sutcliffe, J. Peconi, Rosa Pitts, G. Fegan, Saiful Islam, Vincent Gillan, C. Entwistle, Rebecca Beresford, M. Abendstern, C. Giebel, Saima Ahmed, Rowan Jasper, A. Usman, Baber Malik, K. Hayhurst
Over half of people with dementia live at home. We know little about what home support could be clinically effective or cost-effective in enabling them to live well. We aimed to (1) review evidence for components of home support, identify their presence in the literature and in services in England, and develop an appropriate economic model; (2) develop and test a practical memory support package in early-stage dementia, test the clinical effectiveness and cost-effectiveness of routine home support in later-stage dementia and design a toolkit based on this evidence; and (3) elicit the preferences of staff, carers and people with dementia for home support inputs and packages, and evaluate the cost-effectiveness of these approaches in early- and later-stage dementia. We undertook (1) an evidence synthesis, national surveys on the NHS and social care and an economic review; (2) a multicentre pragmatic randomised trial [Dementia Early Stage Cognitive Aids New Trial (DESCANT)] to estimate the clinical effectiveness and cost-effectiveness of providing memory aids and guidance to people with early-stage dementia (the DESCANT intervention), alongside process evaluation and qualitative analysis, an observational study of existing care packages in later-stage dementia along with qualitative analysis, and toolkit development to summarise this evidence; and (3) consultation with experts, staff and carers to explore the balance between informal and paid home support using case vignettes, discrete choice experiments to explore the preferences of people with dementia and carers between home support packages in early- and later-stage dementia, and cost–utility analysis building on trial and observational study. The national surveys described Community Mental Health Teams, memory clinics and social care services across England. Recruitment to the trial was through memory services in nine NHS trusts in England and one health board in Wales. Recruitment to the observational study was through social services in 17 local authorities in England. Recruitment for the vignette and preference studies was through memory services, community centres and carers’ organisations. People aged > 50 years with dementia within 1 year of first attendance at a memory clinic were eligible for the trial. People aged > 60 years with later-stage dementia within 3 months of a review of care needs were eligible for the observational study. We recruited staff, carers and people with dementia for the vignette and preference studies. All participants had to give written informed consent. The trial and observational study used the Bristol Activities of Daily Living Scale as the primary outcome and also measured quality of life, capability, cognition, general psychological health and carers’ sense of competence. Owing to the heterogeneity of interventions, methods and outcome measures, our evidence and economic reviews both used narrative synthesis. T
{"title":"Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT","authors":"P. Clarkson, D. Challis, J. Hughes, B. Roe, L. Davies, I. Russell, M. Orrell, F. Poland, D. Jolley, N. Kapur, Catherine A. Robinson, Helen Chester, S. Davies, C. Sutcliffe, J. Peconi, Rosa Pitts, G. Fegan, Saiful Islam, Vincent Gillan, C. Entwistle, Rebecca Beresford, M. Abendstern, C. Giebel, Saima Ahmed, Rowan Jasper, A. Usman, Baber Malik, K. Hayhurst","doi":"10.3310/pgfar09060","DOIUrl":"https://doi.org/10.3310/pgfar09060","url":null,"abstract":"\u0000 \u0000 Over half of people with dementia live at home. We know little about what home support could be clinically effective or cost-effective in enabling them to live well.\u0000 \u0000 \u0000 \u0000 We aimed to (1) review evidence for components of home support, identify their presence in the literature and in services in England, and develop an appropriate economic model; (2) develop and test a practical memory support package in early-stage dementia, test the clinical effectiveness and cost-effectiveness of routine home support in later-stage dementia and design a toolkit based on this evidence; and (3) elicit the preferences of staff, carers and people with dementia for home support inputs and packages, and evaluate the cost-effectiveness of these approaches in early- and later-stage dementia.\u0000 \u0000 \u0000 \u0000 We undertook (1) an evidence synthesis, national surveys on the NHS and social care and an economic review; (2) a multicentre pragmatic randomised trial [Dementia Early Stage Cognitive Aids New Trial (DESCANT)] to estimate the clinical effectiveness and cost-effectiveness of providing memory aids and guidance to people with early-stage dementia (the DESCANT intervention), alongside process evaluation and qualitative analysis, an observational study of existing care packages in later-stage dementia along with qualitative analysis, and toolkit development to summarise this evidence; and (3) consultation with experts, staff and carers to explore the balance between informal and paid home support using case vignettes, discrete choice experiments to explore the preferences of people with dementia and carers between home support packages in early- and later-stage dementia, and cost–utility analysis building on trial and observational study.\u0000 \u0000 \u0000 \u0000 The national surveys described Community Mental Health Teams, memory clinics and social care services across England. Recruitment to the trial was through memory services in nine NHS trusts in England and one health board in Wales. Recruitment to the observational study was through social services in 17 local authorities in England. Recruitment for the vignette and preference studies was through memory services, community centres and carers’ organisations.\u0000 \u0000 \u0000 \u0000 People aged > 50 years with dementia within 1 year of first attendance at a memory clinic were eligible for the trial. People aged > 60 years with later-stage dementia within 3 months of a review of care needs were eligible for the observational study. We recruited staff, carers and people with dementia for the vignette and preference studies. All participants had to give written informed consent.\u0000 \u0000 \u0000 \u0000 The trial and observational study used the Bristol Activities of Daily Living Scale as the primary outcome and also measured quality of life, capability, cognition, general psychological health and carers’ sense of competence.\u0000 \u0000 \u0000 \u0000 Owing to the heterogeneity of interventions, methods and outcome measures, our evidence and economic reviews both used narrative synthesis. T","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-06-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89155315","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
M. Downs, Alan Blighe, Robin Carpenter, Alexandra R Feast, K. Froggatt, S. Gordon, R. Hunter, Liz Jones, Natália Lago, B. McCormack, L. Marston, Shirley Nurock, M. Panca, Helen Permain, C. Powell, G. Rait, L. Robinson, Barbara Woodward-Carlton, John Wood, John B. Young, E. Sampson
An unplanned hospital admission of a nursing home resident distresses the person, their family and nursing home staff, and is costly to the NHS. Improving health care in care homes, including early detection of residents’ health changes, may reduce hospital admissions. Previously, we identified four conditions associated with avoidable hospital admissions. We noted promising ‘within-home’ complex interventions including care pathways, knowledge and skills enhancement, and implementation support. Develop a complex intervention with implementation support [the Better Health in Residents in Care Homes with Nursing (BHiRCH-NH)] to improve early detection, assessment and treatment for the four conditions. Determine its impact on hospital admissions, test study procedures and acceptability of the intervention and implementation support, and indicate if a definitive trial was warranted. A Carer Reference Panel advised on the intervention, implementation support and study documentation, and engaged in data analysis and interpretation. In workstream 1, we developed a complex intervention to reduce rates of hospitalisation from nursing homes using mixed methods, including a rapid research review, semistructured interviews and consensus workshops. The complex intervention comprised care pathways, approaches to enhance staff knowledge and skills, implementation support and clarity regarding the role of family carers. In workstream 2, we tested the complex intervention and implementation support via two work packages. In work package 1, we conducted a feasibility study of the intervention, implementation support and study procedures in two nursing homes and refined the complex intervention to comprise the Stop and Watch Early Warning Tool (S&W), condition-specific care pathways and a structured framework for nurses to communicate with primary care. The final implementation support included identifying two Practice Development Champions (PDCs) in each intervention home, and supporting them with a training workshop, practice development support group, monthly coaching calls, handbooks and web-based resources. In work package 2, we undertook a cluster randomised controlled trial to pilot test the complex intervention for acceptability and a preliminary estimate of effect. Fourteen nursing homes allocated to intervention and implementation support (n = 7) or treatment as usual (n = 7). We recruited sufficient numbers of nursing homes (n = 14), staff (n = 148), family carers (n = 95) and residents (n = 245). Two nursing homes withdrew prior to the intervention starting. This ran from February to July 2018. Individual-level data on nursing home residents, their family carers and staff; system-level data using nursing home records; and process-level data comprising how the intervention was implemented. Data were collected on recruitment rates, consent and the numbers of family carers who wished to be involved in the resi
{"title":"A complex intervention to reduce avoidable hospital admissions in nursing homes: a research programme including the BHiRCH-NH pilot cluster RCT","authors":"M. Downs, Alan Blighe, Robin Carpenter, Alexandra R Feast, K. Froggatt, S. Gordon, R. Hunter, Liz Jones, Natália Lago, B. McCormack, L. Marston, Shirley Nurock, M. Panca, Helen Permain, C. Powell, G. Rait, L. Robinson, Barbara Woodward-Carlton, John Wood, John B. Young, E. Sampson","doi":"10.3310/PGFAR09020","DOIUrl":"https://doi.org/10.3310/PGFAR09020","url":null,"abstract":"\u0000 \u0000 An unplanned hospital admission of a nursing home resident distresses the person, their family and nursing home staff, and is costly to the NHS. Improving health care in care homes, including early detection of residents’ health changes, may reduce hospital admissions. Previously, we identified four conditions associated with avoidable hospital admissions. We noted promising ‘within-home’ complex interventions including care pathways, knowledge and skills enhancement, and implementation support.\u0000 \u0000 \u0000 \u0000 Develop a complex intervention with implementation support [the Better Health in Residents in Care Homes with Nursing (BHiRCH-NH)] to improve early detection, assessment and treatment for the four conditions. Determine its impact on hospital admissions, test study procedures and acceptability of the intervention and implementation support, and indicate if a definitive trial was warranted.\u0000 \u0000 \u0000 \u0000 A Carer Reference Panel advised on the intervention, implementation support and study documentation, and engaged in data analysis and interpretation. In workstream 1, we developed a complex intervention to reduce rates of hospitalisation from nursing homes using mixed methods, including a rapid research review, semistructured interviews and consensus workshops. The complex intervention comprised care pathways, approaches to enhance staff knowledge and skills, implementation support and clarity regarding the role of family carers. In workstream 2, we tested the complex intervention and implementation support via two work packages. In work package 1, we conducted a feasibility study of the intervention, implementation support and study procedures in two nursing homes and refined the complex intervention to comprise the Stop and Watch Early Warning Tool (S&W), condition-specific care pathways and a structured framework for nurses to communicate with primary care. The final implementation support included identifying two Practice Development Champions (PDCs) in each intervention home, and supporting them with a training workshop, practice development support group, monthly coaching calls, handbooks and web-based resources. In work package 2, we undertook a cluster randomised controlled trial to pilot test the complex intervention for acceptability and a preliminary estimate of effect.\u0000 \u0000 \u0000 \u0000 Fourteen nursing homes allocated to intervention and implementation support (n = 7) or treatment as usual (n = 7).\u0000 \u0000 \u0000 \u0000 We recruited sufficient numbers of nursing homes (n = 14), staff (n = 148), family carers (n = 95) and residents (n = 245). Two nursing homes withdrew prior to the intervention starting.\u0000 \u0000 \u0000 \u0000 This ran from February to July 2018.\u0000 \u0000 \u0000 \u0000 Individual-level data on nursing home residents, their family carers and staff; system-level data using nursing home records; and process-level data comprising how the intervention was implemented. Data were collected on recruitment rates, consent and the numbers of family carers who wished to be involved in the resi","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81447649","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
K. Lovell, P. Bee, P. Bower, H. Brooks, Patrick Cahoon, P. Callaghan, L. Carter, L. Cree, L. Davies, R. Drake, C. Fraser, C. Gibbons, A. Grundy, K. Hinsliff-Smith, O. Meade, C. Roberts, A. Rogers, K. Rushton, C. Sanders, G. Shields, Lauren Walker
Service users and carers using mental health services want more involvement in their care and the aim of this research programme was to enhance service user and carer involvement in care planning in mental health services. Co-develop and co-deliver a training intervention for health professionals in community mental health teams, which aimed to enhance service user and carer involvement in care planning. Develop a patient-reported outcome measure of service user involvement in care planning, design an audit tool and assess individual preferences for key aspects of care planning involvement. Evaluate the clinical effectiveness and the cost-effectiveness of the training. Understand the barriers to and facilitators of implementing service user- and carer-involved care planning. Disseminate resources to stakeholders. A systematic review, focus groups and interviews with service users/carers/health professionals informed the training and determined the priorities underpinning involvement in care planning. Data from focus groups and interviews were combined and analysed using framework analysis. The results of the systematic review, focus groups/interviews and a review of the training interventions were synthesised to develop the final training intervention. To develop and validate the patient-reported outcome measure, items were generated from focus groups and interviews, and a psychometric analysis was conducted. Patient-reported outcome measure items and a three-round consensus exercise were used to develop an audit tool, and a stated preference survey was undertaken to assess individual preferences for key aspects of care planning. The clinical effectiveness and cost-effectiveness of the training were evaluated using a pragmatic cluster trial with cohort and cross-sectional samples. A nested longitudinal qualitative process evaluation using multiple methods, including semistructured interviews with key informants involved locally and nationally in mental health policy, practice and research, was undertaken. A mapping exercise was used to determine current practice, and semistructured interviews were undertaken with service users and mental health professionals from both the usual-care and the intervention arms of the trial at three time points (i.e. baseline and 6 months and 12 months post intervention). The results from focus groups (n = 56) and interviews (n = 74) highlighted a need to deliver training to increase the quality of care planning and a training intervention was developed. We recruited 402 participants to develop the final 14-item patient-reported outcome measure and a six-item audit tool. We recruited 232 participants for the stated preference survey and found that preferences were strongest for the attribute ‘my preferences for care are included in the care plan’. The training was delivered to 304 care co-ordinators working in community mental health teams across 10 NHS trusts. The cluster trial and cross-se
{"title":"Training to enhance user and carer involvement in mental health-care planning: the EQUIP research programme including a cluster RCT","authors":"K. Lovell, P. Bee, P. Bower, H. Brooks, Patrick Cahoon, P. Callaghan, L. Carter, L. Cree, L. Davies, R. Drake, C. Fraser, C. Gibbons, A. Grundy, K. Hinsliff-Smith, O. Meade, C. Roberts, A. Rogers, K. Rushton, C. Sanders, G. Shields, Lauren Walker","doi":"10.3310/pgfar07090","DOIUrl":"https://doi.org/10.3310/pgfar07090","url":null,"abstract":"\u0000 \u0000 Service users and carers using mental health services want more involvement in their care and the aim of this research programme was to enhance service user and carer involvement in care planning in mental health services.\u0000 \u0000 \u0000 \u0000 Co-develop and co-deliver a training intervention for health professionals in community mental health teams, which aimed to enhance service user and carer involvement in care planning. Develop a patient-reported outcome measure of service user involvement in care planning, design an audit tool and assess individual preferences for key aspects of care planning involvement. Evaluate the clinical effectiveness and the cost-effectiveness of the training. Understand the barriers to and facilitators of implementing service user- and carer-involved care planning. Disseminate resources to stakeholders.\u0000 \u0000 \u0000 \u0000 A systematic review, focus groups and interviews with service users/carers/health professionals informed the training and determined the priorities underpinning involvement in care planning. Data from focus groups and interviews were combined and analysed using framework analysis. The results of the systematic review, focus groups/interviews and a review of the training interventions were synthesised to develop the final training intervention. To develop and validate the patient-reported outcome measure, items were generated from focus groups and interviews, and a psychometric analysis was conducted. Patient-reported outcome measure items and a three-round consensus exercise were used to develop an audit tool, and a stated preference survey was undertaken to assess individual preferences for key aspects of care planning. The clinical effectiveness and cost-effectiveness of the training were evaluated using a pragmatic cluster trial with cohort and cross-sectional samples. A nested longitudinal qualitative process evaluation using multiple methods, including semistructured interviews with key informants involved locally and nationally in mental health policy, practice and research, was undertaken. A mapping exercise was used to determine current practice, and semistructured interviews were undertaken with service users and mental health professionals from both the usual-care and the intervention arms of the trial at three time points (i.e. baseline and 6 months and 12 months post intervention).\u0000 \u0000 \u0000 \u0000 The results from focus groups (n = 56) and interviews (n = 74) highlighted a need to deliver training to increase the quality of care planning and a training intervention was developed. We recruited 402 participants to develop the final 14-item patient-reported outcome measure and a six-item audit tool. We recruited 232 participants for the stated preference survey and found that preferences were strongest for the attribute ‘my preferences for care are included in the care plan’. The training was delivered to 304 care co-ordinators working in community mental health teams across 10 NHS trusts. The cluster trial and cross-se","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86086717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
L. Duley, J. Dorling, S. Ayers, S. Oliver, C. W. Yoxall, A. Weeks, C. Megone, S. Oddie, G. Gyte, Z. Chivers, J. Thornton, D. Field, A. Sawyer, W. McGuire
Being born very premature (i.e. before 32 weeks’ gestation) has an impact on survival and quality of life. Improving care at birth may improve outcomes and parents’ experiences. To improve the quality of care and outcomes following very preterm birth. We used mixed methods, including a James Lind Alliance prioritisation, a systematic review, a framework synthesis, a comparative review, qualitative studies, development of a questionnaire tool and a medical device (a neonatal resuscitation trolley), a survey of practice, a randomised trial and a protocol for a prospective meta-analysis using individual participant data. For the prioritisation, this included people affected by preterm birth and health-care practitioners in the UK relevant to preterm birth. The qualitative work on preterm birth and the development of the questionnaire involved parents of infants born at three maternity hospitals in southern England. The medical device was developed at Liverpool Women’s Hospital. The survey of practice involved UK neonatal units. The randomised trial was conducted at eight UK tertiary maternity hospitals. For prioritisation, 26 organisations and 386 individuals; for the interviews and questionnaire tool, 32 mothers and seven fathers who had a baby born before 32 weeks’ gestation for interviews evaluating the trolley, 30 people who had experienced it being used at the birth of their baby (19 mothers, 10 partners and 1 grandmother) and 20 clinicians who were present when it was being used; for the trial, 261 women expected to have a live birth before 32 weeks’ gestation, and their 276 babies. Providing neonatal care at very preterm birth beside the mother, and with the umbilical cord intact; timing of cord clamping at very preterm birth. Research priorities for preterm birth; feasibility and acceptability of the trolley; feasibility of a randomised trial, death and intraventricular haemorrhage. Systematic review of Cochrane reviews (umbrella review); framework synthesis of ethics aspects of consent, with conceptual framework to inform selection criteria for empirical and analytical studies. The comparative review included studies using a questionnaire to assess satisfaction with care during childbirth, and provided psychometric information. Our prioritisation identified 104 research topics for preterm birth, with the top 30 ranked. An ethnographic analysis of decision-making during this process suggested ways that it might be improved. Qualitative interviews with parents about their experiences of very preterm birth identified two differences with term births: the importance of the staff appearing calm and of staff taking control. Following a comparative review, this led to the development of a questionnaire to assess parents’ views of care during very preterm birth. A systematic overview summarised evidence for delivery room neonatal care and revealed significant evidence gaps. The framework s
早产(即在妊娠32周之前出生)对生存和生活质量有影响。改善出生时的护理可能会改善结果和父母的经历。提高极早产后的护理质量和结果。我们使用了混合方法，包括詹姆斯·林德联盟优先级排序、系统评价、框架综合、比较评价、定性研究、问卷调查工具和医疗设备(新生儿复苏手推车)的开发、实践调查、随机试验和使用个体参与者数据的前瞻性荟萃分析方案。就优先次序而言，这包括受早产影响的人和联合王国与早产有关的保健从业人员。关于早产的定性工作和问卷的编制涉及在英格兰南部三家妇产医院出生的婴儿的父母。这种医疗设备是由利物浦妇女医院研发的。实践调查涉及英国新生儿单位。该随机试验在英国八家三级妇产医院进行。在优先顺序方面，有26个组织和386名个人;在访谈和问卷调查工具中，32位在怀孕32周之前生过孩子的母亲和7位父亲对手推车进行评估，30位在婴儿出生时经历过手推车使用的人(19位母亲，10位伴侣和1位祖母)和20位在手推车使用时在场的临床医生;在这项试验中，261名怀孕32周前有望活产的妇女和她们的276名婴儿。在脐带完好的情况下，在母亲身边为极早产儿提供新生儿护理;早产儿夹脐带的时机。早产的研究重点;小车的可行性和可接受性;随机试验的可行性、死亡和脑室内出血。Cochrane综述的系统综述(总括性综述);框架综合伦理方面的同意，与概念框架告知选择标准的经验和分析研究。比较回顾包括使用问卷来评估分娩期间护理满意度的研究，并提供心理测量信息。我们确定了104个关于早产的研究课题，排名前30位。对这一过程中的决策进行的民族志分析提出了改进决策的方法。对非常早产的父母进行了定性访谈，了解他们的经历，发现了与足月分娩的两个不同之处:工作人员表现冷静和工作人员控制的重要性。在一项比较审查之后，这导致了一份问卷的发展，以评估父母对非常早产期间护理的看法。一项系统的综述总结了产房新生儿护理的证据，并揭示了显著的证据差距。框架综合探讨了涉及生病或早产儿的试验的同意伦理问题，结论是现有的程序都不理想，并确定了三个重要的差距。这导致了两阶段同意途径的发展(口头同意之后是书面同意)，随后在我们的随机试验中进行了评估。我们对分娩时护理实践的调查显示，脐带夹紧方法存在差异，没有医院提供脐带完整的新生儿护理。我们发现新生儿护理可以在母亲身边提供，使用我们开发的移动新生儿复苏手推车或现有设备。定性访谈表明，新生儿护理身旁的母亲是重视父母和临床医生可接受的。我们的试点随机试验比较了2分钟后脐带夹紧和新生儿初始护理(如果需要的话)，脐带完整、20秒内夹紧和新生儿初始护理。该研究证明了英国大型随机试验的可行性。135名被分配到脐带夹紧≥2分钟的婴儿中，7名(5.2%)死亡，135名被分配到脐带夹紧≤20秒的婴儿中，15名(11.1%)死亡(风险差异为-5.9%，95%置信区间为-12.4%至0.6%)。在活产婴儿中，134例脐带夹紧≥2分钟的婴儿中有43例(32%)发生脑室内出血，而132例脐带夹紧≤20秒的婴儿中有47例(36%)发生脑室内出血(风险差异-3.5%，95% CI -14.9%至7.8%)。关于早产的定性访谈的小样本，母亲旁边的新生儿护理的单中心评估，和一个试点试验。我们的研究项目提高了对极早产儿父母经历的理解，并为临床指南和研究议程提供了信息。我们的两阶段同意途径被推荐用于产时临床研究试验。我们的试点试验将有助于个体参与者数据的荟萃分析，其结果将指导未来试验的设计。 对早产的研究应考虑到最优先的事项。值得对母亲身边的新生儿护理进行进一步评估，未来对脐带夹断管理的替代政策的试验应考虑到meta分析。本研究注册号为PROSPERO CRD42012003038和CRD42013004405。此外，当前对照试验ISRCTN21456601。该项目由国家卫生研究所(NIHR)应用研究方案资助，并将全文发表在应用研究方案资助上;第七卷，第8号请参阅NIHR期刊图书馆网站了解更多项目信息。
{"title":"Improving quality of care and outcome at very preterm birth: the Preterm Birth research programme, including the Cord pilot RCT","authors":"L. Duley, J. Dorling, S. Ayers, S. Oliver, C. W. Yoxall, A. Weeks, C. Megone, S. Oddie, G. Gyte, Z. Chivers, J. Thornton, D. Field, A. Sawyer, W. McGuire","doi":"10.3310/pgfar07080","DOIUrl":"https://doi.org/10.3310/pgfar07080","url":null,"abstract":"\u0000 \u0000 Being born very premature (i.e. before 32 weeks’ gestation) has an impact on survival and quality of life. Improving care at birth may improve outcomes and parents’ experiences.\u0000 \u0000 \u0000 \u0000 To improve the quality of care and outcomes following very preterm birth.\u0000 \u0000 \u0000 \u0000 We used mixed methods, including a James Lind Alliance prioritisation, a systematic review, a framework synthesis, a comparative review, qualitative studies, development of a questionnaire tool and a medical device (a neonatal resuscitation trolley), a survey of practice, a randomised trial and a protocol for a prospective meta-analysis using individual participant data.\u0000 \u0000 \u0000 \u0000 For the prioritisation, this included people affected by preterm birth and health-care practitioners in the UK relevant to preterm birth. The qualitative work on preterm birth and the development of the questionnaire involved parents of infants born at three maternity hospitals in southern England. The medical device was developed at Liverpool Women’s Hospital. The survey of practice involved UK neonatal units. The randomised trial was conducted at eight UK tertiary maternity hospitals.\u0000 \u0000 \u0000 \u0000 For prioritisation, 26 organisations and 386 individuals; for the interviews and questionnaire tool, 32 mothers and seven fathers who had a baby born before 32 weeks’ gestation for interviews evaluating the trolley, 30 people who had experienced it being used at the birth of their baby (19 mothers, 10 partners and 1 grandmother) and 20 clinicians who were present when it was being used; for the trial, 261 women expected to have a live birth before 32 weeks’ gestation, and their 276 babies.\u0000 \u0000 \u0000 \u0000 Providing neonatal care at very preterm birth beside the mother, and with the umbilical cord intact; timing of cord clamping at very preterm birth.\u0000 \u0000 \u0000 \u0000 Research priorities for preterm birth; feasibility and acceptability of the trolley; feasibility of a randomised trial, death and intraventricular haemorrhage.\u0000 \u0000 \u0000 \u0000 Systematic review of Cochrane reviews (umbrella review); framework synthesis of ethics aspects of consent, with conceptual framework to inform selection criteria for empirical and analytical studies. The comparative review included studies using a questionnaire to assess satisfaction with care during childbirth, and provided psychometric information.\u0000 \u0000 \u0000 \u0000 Our prioritisation identified 104 research topics for preterm birth, with the top 30 ranked. An ethnographic analysis of decision-making during this process suggested ways that it might be improved. Qualitative interviews with parents about their experiences of very preterm birth identified two differences with term births: the importance of the staff appearing calm and of staff taking control. Following a comparative review, this led to the development of a questionnaire to assess parents’ views of care during very preterm birth. A systematic overview summarised evidence for delivery room neonatal care and revealed significant evidence gaps. The framework s","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75811902","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
N. Modi, D. Ashby, C. Battersby, P. Brocklehurst, Z. Chivers, K. Costeloe, E. Draper, Victoria Foster, J. Kemp, A. Majeed, J. Murray, S. Petrou, K. Rogers, S. Santhakumaran, S. Saxena, Y. Statnikov, H. Wong, A. Young
Clinical data offer the potential to advance patient care. Neonatal specialised care is a high-cost NHS service received by approximately 80,000 newborn infants each year. (1) To develop the use of routinely recorded operational clinical data from electronic patient records (EPRs), secure national coverage, evaluate and improve the quality of clinical data, and develop their use as a national resource to improve neonatal health care and outcomes. To test the hypotheses that (2) clinical and research data are of comparable quality, (3) routine NHS clinical assessment at the age of 2 years reliably identifies children with neurodevelopmental impairment and (4) trial-based economic evaluations of neonatal interventions can be reliably conducted using clinical data. (5) To test methods to link NHS data sets and (6) to evaluate parent views of personal data in research. Six inter-related workstreams; quarterly extractions of predefined data from neonatal EPRs; and approvals from the National Research Ethics Service, Health Research Authority Confidentiality Advisory Group, Caldicott Guardians and lead neonatal clinicians of participating NHS trusts. NHS neonatal units. Neonatal clinical teams; parents of babies admitted to NHS neonatal units. In workstream 3, we employed the Bayley-III scales to evaluate neurodevelopmental status and the Quantitative Checklist of Autism in Toddlers (Q-CHAT) to evaluate social communication skills. In workstream 6, we recruited parents with previous experience of a child in neonatal care to assist in the design of a questionnaire directed at the parents of infants admitted to neonatal units. Data were extracted from the EPR of admissions to NHS neonatal units. We created a National Neonatal Research Database (NNRD) containing a defined extract from real-time, point-of-care, clinician-entered EPRs from all NHS neonatal units in England, Wales and Scotland (n = 200), established a UK Neonatal Collaborative of all NHS trusts providing neonatal specialised care, and created a new NHS information standard: the Neonatal Data Set (ISB 1595) (see http://webarchive.nationalarchives.gov.uk/±/http://www.isb.nhs.uk/documents/isb-1595/amd-32–2012/index_html; accessed 25 June 2018). We found low discordance between clinical (NNRD) and research data for most important infant and maternal characteristics, and higher prevalence of clinical outcomes. Compared with research assessments, NHS clinical assessment at the age of 2 years has lower sensitivity but higher specificity for identifying children with neurodevelopmental impairment. Completeness and quality are higher for clinical than for administrative NHS data; linkage is feasible and substantially enhances data quality and scope. The majority of hospital resource inputs for economic evaluations of neonatal interventions can be extracted reliably from the NNRD. In general, there is strong parent support for sharing routine
{"title":"Developing routinely recorded clinical data from electronic patient records as a national resource to improve neonatal health care: the Medicines for Neonates research programme","authors":"N. Modi, D. Ashby, C. Battersby, P. Brocklehurst, Z. Chivers, K. Costeloe, E. Draper, Victoria Foster, J. Kemp, A. Majeed, J. Murray, S. Petrou, K. Rogers, S. Santhakumaran, S. Saxena, Y. Statnikov, H. Wong, A. Young","doi":"10.3310/pgfar07060","DOIUrl":"https://doi.org/10.3310/pgfar07060","url":null,"abstract":"\u0000 \u0000 Clinical data offer the potential to advance patient care. Neonatal specialised care is a high-cost NHS service received by approximately 80,000 newborn infants each year.\u0000 \u0000 \u0000 \u0000 (1) To develop the use of routinely recorded operational clinical data from electronic patient records (EPRs), secure national coverage, evaluate and improve the quality of clinical data, and develop their use as a national resource to improve neonatal health care and outcomes. To test the hypotheses that (2) clinical and research data are of comparable quality, (3) routine NHS clinical assessment at the age of 2 years reliably identifies children with neurodevelopmental impairment and (4) trial-based economic evaluations of neonatal interventions can be reliably conducted using clinical data. (5) To test methods to link NHS data sets and (6) to evaluate parent views of personal data in research.\u0000 \u0000 \u0000 \u0000 Six inter-related workstreams; quarterly extractions of predefined data from neonatal EPRs; and approvals from the National Research Ethics Service, Health Research Authority Confidentiality Advisory Group, Caldicott Guardians and lead neonatal clinicians of participating NHS trusts.\u0000 \u0000 \u0000 \u0000 NHS neonatal units.\u0000 \u0000 \u0000 \u0000 Neonatal clinical teams; parents of babies admitted to NHS neonatal units.\u0000 \u0000 \u0000 \u0000 In workstream 3, we employed the Bayley-III scales to evaluate neurodevelopmental status and the Quantitative Checklist of Autism in Toddlers (Q-CHAT) to evaluate social communication skills. In workstream 6, we recruited parents with previous experience of a child in neonatal care to assist in the design of a questionnaire directed at the parents of infants admitted to neonatal units.\u0000 \u0000 \u0000 \u0000 Data were extracted from the EPR of admissions to NHS neonatal units.\u0000 \u0000 \u0000 \u0000 We created a National Neonatal Research Database (NNRD) containing a defined extract from real-time, point-of-care, clinician-entered EPRs from all NHS neonatal units in England, Wales and Scotland (n = 200), established a UK Neonatal Collaborative of all NHS trusts providing neonatal specialised care, and created a new NHS information standard: the Neonatal Data Set (ISB 1595) (see http://webarchive.nationalarchives.gov.uk/±/http://www.isb.nhs.uk/documents/isb-1595/amd-32–2012/index_html; accessed 25 June 2018).\u0000 \u0000 \u0000 \u0000 We found low discordance between clinical (NNRD) and research data for most important infant and maternal characteristics, and higher prevalence of clinical outcomes. Compared with research assessments, NHS clinical assessment at the age of 2 years has lower sensitivity but higher specificity for identifying children with neurodevelopmental impairment. Completeness and quality are higher for clinical than for administrative NHS data; linkage is feasible and substantially enhances data quality and scope. The majority of hospital resource inputs for economic evaluations of neonatal interventions can be extracted reliably from the NNRD. In general, there is strong parent support for sharing routine","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79525588","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
H. Killaspy, S. Priebe, M. King, S. Eldridge, P. McCrone, G. Shepherd, Maurice Arbuthnott, G. Leavey, S. Curtis, P. McPherson, S. Dowling
Across England, around 60,000 people live in mental health supported accommodation: residential care, supported housing and floating outreach. Residential care and supported housing provide on-site support (residential care provides the highest level), whereas floating outreach staff visit people living in their own tenancies. Despite their abundance, little is known about the quality and outcomes of these services. The aim was to assess the quality, costs and effectiveness of mental health supported accommodation services in England. The objectives were (1) to adapt the Quality Indicator for Rehabilitative Care (QuIRC) and the Client Assessment of Treatment scale for use in mental health supported accommodation services; (2) to assess the quality and costs of these services in England and the proportion of people who ‘move on’ to less supported accommodation without placement breakdown (e.g. to move from residential care to supported housing or supported housing to floating outreach, or, for those receiving floating outreach, to manage with fewer hours of support); (3) to identify service and service user factors (including costs) associated with greater quality of life, autonomy and successful move-on; and (4) to carry out a feasibility trial to assess the required sample size and appropriate outcomes for a randomised evaluation of two existing models of supported accommodation. Objective 1 – focus groups with staff (n = 12) and service users (n = 16); psychometric testing in 52 services, repeated in 87 services (adapted QuIRC) and with 618 service users (adapted Client Assessment of Treatment scale). Objectives 2 and 3 – national survey and prospective cohort study involving 87 services (residential care, n = 22; supported housing, n = 35; floating outreach, n = 30) and 619 service users followed over 30 months; qualitative interviews with 30 staff and 30 service users. Objective 4 – individually randomised, parallel-group feasibility trial in three centres. English mental health supported accommodation services. Staff and users of mental health supported accomodation services. Feasibility trial involved two existing models of supported accommodation: supported housing and floating outreach. Cohort study – proportion of participants who successfully moved to less supported accommodation at 30 months’ follow-up without placement breakdown. Feasibility trial – participant recruitment and withdrawal rates. The adapted QuIRC [QuIRC: Supported Accomodation (QuIRC-SA)] had excellent inter-rater reliability, and exploratory factor analysis confirmed its structural validity (all items loaded onto the relevant domain at the > ± 0.3 level). The adapted Client Assessment of Treatment for Supported Accommodation had good internal consistency (Cronbach’s alpha 0.89) and convergent validity (r s = 0.369; p < 0.001). Supported housing services scored higher than residential care and floating outreach on s
{"title":"Supported accommodation for people with mental health problems: the QuEST research programme with feasibility RCT","authors":"H. Killaspy, S. Priebe, M. King, S. Eldridge, P. McCrone, G. Shepherd, Maurice Arbuthnott, G. Leavey, S. Curtis, P. McPherson, S. Dowling","doi":"10.3310/pgfar07070","DOIUrl":"https://doi.org/10.3310/pgfar07070","url":null,"abstract":"\u0000 \u0000 Across England, around 60,000 people live in mental health supported accommodation: residential care, supported housing and floating outreach. Residential care and supported housing provide on-site support (residential care provides the highest level), whereas floating outreach staff visit people living in their own tenancies. Despite their abundance, little is known about the quality and outcomes of these services.\u0000 \u0000 \u0000 \u0000 The aim was to assess the quality, costs and effectiveness of mental health supported accommodation services in England. The objectives were (1) to adapt the Quality Indicator for Rehabilitative Care (QuIRC) and the Client Assessment of Treatment scale for use in mental health supported accommodation services; (2) to assess the quality and costs of these services in England and the proportion of people who ‘move on’ to less supported accommodation without placement breakdown (e.g. to move from residential care to supported housing or supported housing to floating outreach, or, for those receiving floating outreach, to manage with fewer hours of support); (3) to identify service and service user factors (including costs) associated with greater quality of life, autonomy and successful move-on; and (4) to carry out a feasibility trial to assess the required sample size and appropriate outcomes for a randomised evaluation of two existing models of supported accommodation.\u0000 \u0000 \u0000 \u0000 Objective 1 – focus groups with staff (n = 12) and service users (n = 16); psychometric testing in 52 services, repeated in 87 services (adapted QuIRC) and with 618 service users (adapted Client Assessment of Treatment scale). Objectives 2 and 3 – national survey and prospective cohort study involving 87 services (residential care, n = 22; supported housing, n = 35; floating outreach, n = 30) and 619 service users followed over 30 months; qualitative interviews with 30 staff and 30 service users. Objective 4 – individually randomised, parallel-group feasibility trial in three centres.\u0000 \u0000 \u0000 \u0000 English mental health supported accommodation services.\u0000 \u0000 \u0000 \u0000 Staff and users of mental health supported accomodation services.\u0000 \u0000 \u0000 \u0000 Feasibility trial involved two existing models of supported accommodation: supported housing and floating outreach.\u0000 \u0000 \u0000 \u0000 Cohort study – proportion of participants who successfully moved to less supported accommodation at 30 months’ follow-up without placement breakdown. Feasibility trial – participant recruitment and withdrawal rates.\u0000 \u0000 \u0000 \u0000 The adapted QuIRC [QuIRC: Supported Accomodation (QuIRC-SA)] had excellent inter-rater reliability, and exploratory factor analysis confirmed its structural validity (all items loaded onto the relevant domain at the > ± 0.3 level). The adapted Client Assessment of Treatment for Supported Accommodation had good internal consistency (Cronbach’s alpha 0.89) and convergent validity (r\u0000 s = 0.369; p < 0.001). Supported housing services scored higher than residential care and floating outreach on s","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80642859","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
N. Bundred, C. Todd, Julie Morris, V. Keeley, A. Purushotham, A. Bagust, P. Foden, M. Bramley, K. Riches
Over 44,000 women are diagnosed with breast cancer annually in the UK. The research comprised three workstreams (WSs) focused on older women.WS1 – to identify the role of older women’s and surgeons’ preferences in cancer treatment decisions and whether comorbidity or fitness for surgery has an impact on survival.WS2 – to assess multifrequency bioimpedance (BEA) compared with perometry in identifying women predisposed to develop lymphoedema after axillary node clearance (ANC) surgery. WS3 – to assess, in women at risk of lymphoedema, whether or not applying compression garments prevents the onset of lymphoedema.WS1 – a prospective, consecutive cohort of surgical consultations with women aged ≥ 70 years with operable breast cancer. Interviews and questionnaire surveys of surgeons’ and women’s perceptions of responsibility for treatment decisions (Controlled Preference Score), effects related to survival and secondary outcomes. WS2 – women undergoing ANC for cancer in 21 UK centres underwent baseline and subsequent BEA, and perometer arm measurements and quality-of-life (QoL) assessments. WS3 – a randomised controlled trial testing standard versus applying graduated compression garments to the affected arm, for 1 year, in WS2 patients developing arm swelling.Breast outpatient clinics in hospitals with specialist lymphoedema clinics.WS1 – patients aged ≥ 70 years with newly diagnosed, operable, invasive breast cancer. WS2 – women with node-positive cancer scheduled to undergo ANC. WS3 – WS2 participants developing a 4–9% increase in arm volume.WS1 – observational study. WS2 – observational study. WS3 – application of graduated compression garments to affected arm, compared with standard management, for 1 year.WS1 – self-report and clinically assessed health, QoL, complications and survival. WS2 – perometer and bioimpedance spectroscopy (BIS) measurements, QoL and health utility; and sensitivity and specificity of BIS for detecting lymphoedema compared with perometer arm measurements; in addition, a health economics assessment was performed. WS3 – time to the development of lymphoedema [≥ 10% relative arm-volume increase (RAVI)] from randomisation.WS1 – overall, 910 women were recruited, but numbers in the substudies differ depending on consent/eligibility. In a study of patient/surgeon choice, 83.0% [95% confidence interval (CI) 80.4% to 85.6%] had surgery. Adjusting for health and choice, only women aged > 85 years had reduced odds of surgery [odds ratio (OR) 0.18, 95%CI 0.07 to 0.44]. Patient role in treatment decisions made no difference to receipt of surgery. A qualitative study of women who did not have surgery identified three groups: ‘patient declined’, ‘patient considered’ and ‘surgeon decided’. In a survival substudy, adjusting for tumour stage, comorbidity and functional status, women undergoing surgery had one-third the hazard of dying from cancer. Serious complications from surgery were low and not predicted by older age. In a substudy of
{"title":"Individualising breast cancer treatment to improve survival and minimise complications in older women: a research programme including the PLACE RCT","authors":"N. Bundred, C. Todd, Julie Morris, V. Keeley, A. Purushotham, A. Bagust, P. Foden, M. Bramley, K. Riches","doi":"10.3310/PGFAR07050","DOIUrl":"https://doi.org/10.3310/PGFAR07050","url":null,"abstract":"Over 44,000 women are diagnosed with breast cancer annually in the UK. The research comprised three workstreams (WSs) focused on older women.WS1 – to identify the role of older women’s and surgeons’ preferences in cancer treatment decisions and whether comorbidity or fitness for surgery has an impact on survival.WS2 – to assess multifrequency bioimpedance (BEA) compared with perometry in identifying women predisposed to develop lymphoedema after axillary node clearance (ANC) surgery. WS3 – to assess, in women at risk of lymphoedema, whether or not applying compression garments prevents the onset of lymphoedema.WS1 – a prospective, consecutive cohort of surgical consultations with women aged ≥ 70 years with operable breast cancer. Interviews and questionnaire surveys of surgeons’ and women’s perceptions of responsibility for treatment decisions (Controlled Preference Score), effects related to survival and secondary outcomes. WS2 – women undergoing ANC for cancer in 21 UK centres underwent baseline and subsequent BEA, and perometer arm measurements and quality-of-life (QoL) assessments. WS3 – a randomised controlled trial testing standard versus applying graduated compression garments to the affected arm, for 1 year, in WS2 patients developing arm swelling.Breast outpatient clinics in hospitals with specialist lymphoedema clinics.WS1 – patients aged ≥ 70 years with newly diagnosed, operable, invasive breast cancer. WS2 – women with node-positive cancer scheduled to undergo ANC. WS3 – WS2 participants developing a 4–9% increase in arm volume.WS1 – observational study. WS2 – observational study. WS3 – application of graduated compression garments to affected arm, compared with standard management, for 1 year.WS1 – self-report and clinically assessed health, QoL, complications and survival. WS2 – perometer and bioimpedance spectroscopy (BIS) measurements, QoL and health utility; and sensitivity and specificity of BIS for detecting lymphoedema compared with perometer arm measurements; in addition, a health economics assessment was performed. WS3 – time to the development of lymphoedema [≥ 10% relative arm-volume increase (RAVI)] from randomisation.WS1 – overall, 910 women were recruited, but numbers in the substudies differ depending on consent/eligibility. In a study of patient/surgeon choice, 83.0% [95% confidence interval (CI) 80.4% to 85.6%] had surgery. Adjusting for health and choice, only women aged > 85 years had reduced odds of surgery [odds ratio (OR) 0.18, 95%CI 0.07 to 0.44]. Patient role in treatment decisions made no difference to receipt of surgery. A qualitative study of women who did not have surgery identified three groups: ‘patient declined’, ‘patient considered’ and ‘surgeon decided’. In a survival substudy, adjusting for tumour stage, comorbidity and functional status, women undergoing surgery had one-third the hazard of dying from cancer. Serious complications from surgery were low and not predicted by older age. In a substudy of","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83369061","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Colver, T. Rapley, J. Parr, H. McConachie, G. Dovey-Pearce, A. Couteur, J. McDonagh, C. Bennett, J. Hislop, G. Maniatopoulos, K. Mann, H. Merrick, M. Pearce, Debbie Reape, L. Vale
As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700. Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition. Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effective and efficient features of transitional health care and (3) to determine how transitional health care should be commissioned and provided. Three work packages addressed each objective. Objective 1. (i) A young people’s advisory group met monthly throughout the programme. (ii) It explored the usefulness of patient-held health information. (iii) A ‘Q-sort’ study examined how young people approached transitional health care. Objective 2. (i) We followed, for 3 years, 374 young people with type 1 diabetes mellitus (150 from five sites in England), autism spectrum disorder (118 from four sites in England) or cerebral palsy (106 from 18 sites in England and Northern Ireland). We assessed whether or not nine proposed beneficial features (PBFs) of transitional health care predicted better outcomes. (ii) We interviewed a subset of 13 young people about their transition. (iii) We undertook a discrete choice experiment and examined the efficiency of illustrative models of transition. Objective 3. (i) We interviewed staff and observed meetings in three trusts to identify the facilitators of and barriers to introducing developmentally appropriate health care (DAH). We developed a toolkit to assist the introduction of DAH. (ii) We undertook a literature review, interviews and site visits to identify the facilitators of and barriers to commissioning transitional health care. (iii) We synthesised learning on ‘what’ and ‘how’ to commission, drawing on meetings with commissioners. Participation in life situations, mental well-being, satisfaction with services and condition-specific outcomes. This was a longitudinal study with a large sample; the conditions chosen were representative; non-participation and attrition appeared unlikely to introduce bias; the research on commissioning was novel; and a young person’s group was involved. There is uncertainty about whether or not the regions and trusts in the longitudinal study were representative; however, we recruited fr
{"title":"Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme","authors":"A. Colver, T. Rapley, J. Parr, H. McConachie, G. Dovey-Pearce, A. Couteur, J. McDonagh, C. Bennett, J. Hislop, G. Maniatopoulos, K. Mann, H. Merrick, M. Pearce, Debbie Reape, L. Vale","doi":"10.3310/PGFAR07040","DOIUrl":"https://doi.org/10.3310/PGFAR07040","url":null,"abstract":"\u0000 \u0000 As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700.\u0000 \u0000 \u0000 \u0000 Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition. Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effective and efficient features of transitional health care and (3) to determine how transitional health care should be commissioned and provided.\u0000 \u0000 \u0000 \u0000 Three work packages addressed each objective. Objective 1. (i) A young people’s advisory group met monthly throughout the programme. (ii) It explored the usefulness of patient-held health information. (iii) A ‘Q-sort’ study examined how young people approached transitional health care. Objective 2. (i) We followed, for 3 years, 374 young people with type 1 diabetes mellitus (150 from five sites in England), autism spectrum disorder (118 from four sites in England) or cerebral palsy (106 from 18 sites in England and Northern Ireland). We assessed whether or not nine proposed beneficial features (PBFs) of transitional health care predicted better outcomes. (ii) We interviewed a subset of 13 young people about their transition. (iii) We undertook a discrete choice experiment and examined the efficiency of illustrative models of transition. Objective 3. (i) We interviewed staff and observed meetings in three trusts to identify the facilitators of and barriers to introducing developmentally appropriate health care (DAH). We developed a toolkit to assist the introduction of DAH. (ii) We undertook a literature review, interviews and site visits to identify the facilitators of and barriers to commissioning transitional health care. (iii) We synthesised learning on ‘what’ and ‘how’ to commission, drawing on meetings with commissioners.\u0000 \u0000 \u0000 \u0000 Participation in life situations, mental well-being, satisfaction with services and condition-specific outcomes.\u0000 \u0000 \u0000 \u0000 This was a longitudinal study with a large sample; the conditions chosen were representative; non-participation and attrition appeared unlikely to introduce bias; the research on commissioning was novel; and a young person’s group was involved.\u0000 \u0000 \u0000 \u0000 There is uncertainty about whether or not the regions and trusts in the longitudinal study were representative; however, we recruited fr","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73615479","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
J. Turner, A. Siriwardena, J. Coster, R. Jacques, A. Irving, A. Crum, H. B. Gorrod, J. Nicholl, V. Phung, Fiona Togher, R. Wilson, A. O’Cathain, A. Booth, D. Bradbury, S. Goodacre, A. Spaight, J. Shewan, R. Pilbery, Daniel Fall, Maggie Marsh, Andrea Broadway-Parkinson, R. Lyons, H. Snooks, M. Campbell
Ambulance service quality measures have focused on response times and a small number of emergency conditions, such as cardiac arrest. These quality measures do not reflect the care for the wide range of problems that ambulance services respond to and the Prehospital Outcomes for Evidence Based Evaluation (PhOEBE) programme sought to address this.The aim was to develop new ways of measuring the impact of ambulance service care by reviewing and synthesising literature on prehospital ambulance outcome measures and using consensus methods to identify measures for further development; creating a data set linking routinely collected ambulance service, hospital and mortality data; and using the linked data to explore the development of case-mix adjustment models to assess differences or changes in processes and outcomes resulting from ambulance service care.A mixed-methods study using a systematic review and synthesis of performance and outcome measures reported in policy and research literature; qualitative interviews with ambulance service users; a three-stage consensus process to identify candidate indicators; the creation of a data set linking ambulance, hospital and mortality data; and statistical modelling of the linked data set to produce novel case-mix adjustment measures of ambulance service quality.East Midlands and Yorkshire, England.Ambulance services, patients, public, emergency care clinical academics, commissioners and policy-makers between 2011 and 2015.None.Ambulance performance and quality measures.Ambulance call-and-dispatch and electronic patient report forms, Hospital Episode Statistics, accident and emergency and inpatient data, and Office for National Statistics mortality data.Seventy-two candidate measures were generated from systematic reviews in four categories: (1) ambulance service operations (n = 14), (2) clinical management of patients (n = 20), (3) impact of care on patients (n = 9) and (4) time measures (n = 29). The most common operations measures were call triage accuracy; clinical management was adherence to care protocols, and for patient outcome it was survival measures. Excluding time measures, nine measures were highly prioritised by participants taking part in the consensus event, including measures relating to pain, patient experience, accuracy of dispatch decisions and patient safety. Twenty experts participated in two Delphi rounds to refine and prioritise measures and 20 measures scored ≥ 8/9 points, which indicated good consensus. Eighteen patient and public representatives attending a consensus workshop identified six measures as important: time to definitive care, response time, reduction in pain score, calls correctly prioritised to appropriate levels of response, proportion of patients with a specific condition who are treated in accordance with established guidelines, and survival to hospital discharge for treatable emergency conditions. From this we developed six new potential indicators using the linke
{"title":"Developing new ways of measuring the quality and impact of ambulance service care: the PhOEBE mixed-methods research programme","authors":"J. Turner, A. Siriwardena, J. Coster, R. Jacques, A. Irving, A. Crum, H. B. Gorrod, J. Nicholl, V. Phung, Fiona Togher, R. Wilson, A. O’Cathain, A. Booth, D. Bradbury, S. Goodacre, A. Spaight, J. Shewan, R. Pilbery, Daniel Fall, Maggie Marsh, Andrea Broadway-Parkinson, R. Lyons, H. Snooks, M. Campbell","doi":"10.3310/PGFAR07030","DOIUrl":"https://doi.org/10.3310/PGFAR07030","url":null,"abstract":"Ambulance service quality measures have focused on response times and a small number of emergency conditions, such as cardiac arrest. These quality measures do not reflect the care for the wide range of problems that ambulance services respond to and the Prehospital Outcomes for Evidence Based Evaluation (PhOEBE) programme sought to address this.The aim was to develop new ways of measuring the impact of ambulance service care by reviewing and synthesising literature on prehospital ambulance outcome measures and using consensus methods to identify measures for further development; creating a data set linking routinely collected ambulance service, hospital and mortality data; and using the linked data to explore the development of case-mix adjustment models to assess differences or changes in processes and outcomes resulting from ambulance service care.A mixed-methods study using a systematic review and synthesis of performance and outcome measures reported in policy and research literature; qualitative interviews with ambulance service users; a three-stage consensus process to identify candidate indicators; the creation of a data set linking ambulance, hospital and mortality data; and statistical modelling of the linked data set to produce novel case-mix adjustment measures of ambulance service quality.East Midlands and Yorkshire, England.Ambulance services, patients, public, emergency care clinical academics, commissioners and policy-makers between 2011 and 2015.None.Ambulance performance and quality measures.Ambulance call-and-dispatch and electronic patient report forms, Hospital Episode Statistics, accident and emergency and inpatient data, and Office for National Statistics mortality data.Seventy-two candidate measures were generated from systematic reviews in four categories: (1) ambulance service operations (n = 14), (2) clinical management of patients (n = 20), (3) impact of care on patients (n = 9) and (4) time measures (n = 29). The most common operations measures were call triage accuracy; clinical management was adherence to care protocols, and for patient outcome it was survival measures. Excluding time measures, nine measures were highly prioritised by participants taking part in the consensus event, including measures relating to pain, patient experience, accuracy of dispatch decisions and patient safety. Twenty experts participated in two Delphi rounds to refine and prioritise measures and 20 measures scored ≥ 8/9 points, which indicated good consensus. Eighteen patient and public representatives attending a consensus workshop identified six measures as important: time to definitive care, response time, reduction in pain score, calls correctly prioritised to appropriate levels of response, proportion of patients with a specific condition who are treated in accordance with established guidelines, and survival to hospital discharge for treatable emergency conditions. From this we developed six new potential indicators using the linke","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75578416","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
D. Osborn, A. Burton, K. Walters, L. Atkins, T. Barnes, R. Blackburn, T. Craig, H. Gilbert, B. Gray, S. Hardoon, Samira Heinkel, R. Holt, R. Hunter, C. Johnston, M. King, J. Leibowitz, L. Marston, S. Michie, R. Morris, S. Morris, I. Nazareth, R. Omar, I. Petersen, R. Peveler, V. Pinfold, F. Stevenson, E. Zomer
Effective interventions are needed to prevent cardiovascular disease (CVD) in people with severe mental illnesses (SMI) because their risk of CVD is higher than that of the general population. (1) Develop and validate risk models for predicting CVD events in people with SMI and evaluate their cost-effectiveness, (2) develop an intervention to reduce levels of cholesterol and CVD risk in SMI and (3) test the clinical effectiveness and cost-effectiveness of this new intervention in primary care. Mixed methods with patient and public involvement throughout. The mixed methods were (1) a prospective cohort and risk score validation study and cost-effectiveness modelling, (2) development work (focus groups, updated systematic review of interventions, primary care database studies investigating statin prescribing and effectiveness) and (3) cluster randomised controlled trial (RCT) assessing the clinical effectiveness and cost-effectiveness of a new practitioner-led intervention, and fidelity assessment of audio-recorded appointments. General practices across England. All studies included adults with SMI (schizophrenia, bipolar disorder or other non-organic psychosis). The RCT included adults with SMI and two or more CVD risk factors. The intervention consisted of 8–12 appointments with a practice nurse/health-care assistant over 6 months, involving collaborative behavioural approaches to CVD risk factors. The intervention was compared with routine practice with a general practitioner (GP). The primary outcome for the risk score work was CVD events, in the cost-effectiveness modelling it was quality-adjusted life-years (QALYs) and in the RCT it was level of total cholesterol. Databases studies used The Health Improvement Network (THIN). Intervention development work included focus groups and systematic reviews. The RCT collected patient self-reported and routine NHS GP data. Intervention appointments were audio-recorded. Two CVD risk score models were developed and validated in 38,824 people with SMI in THIN: the Primrose lipid model requiring cholesterol levels, and the Primrose body mass index (BMI) model with no blood test. These models performed better than published Cox Framingham models. In health economic modelling, the Primrose BMI model was most cost-effective when used as an algorithm to drive statin prescriptions. Focus groups identified barriers to, and facilitators of, reducing CVD risk in SMI including patient engagement and motivation, staff confidence, involving supportive others, goal-setting and continuity of care. Findings were synthesised with evidence from updated systematic reviews to create the Primrose intervention and training programme. THIN cohort studies in 16,854 people with SMI demonstrated that statins effectively reduced levels of cholesterol, with similar effect sizes to those in general population studies over 12–24 months (mean decrease 1.2 mmol/l). Cluster RCT
干预组和TAU组之间的胆固醇水平没有差异，这可能反映了TAU优于标准的全科护理，干预交付的异质性或对他汀类药物的重视程度不理想。新的风险评分应在不同的环境中进行更新、部署和测试，并与不同国家最新版本的心血管疾病风险评分进行比较。未来对心血管疾病风险干预的研究应更多地强调他汀类药物的处方。Primrose干预降低成本背后的机制需要探索，包括SMI相关的培训和在初级保健中为SMI患者提供频繁的支持。当前对照试验ISRCTN13762819。该项目由国家卫生研究所(NIHR)应用研究方案资助，并将全文发表在应用研究方案资助上;第七卷第2期请参阅NIHR期刊图书馆网站了解更多项目信息。David Osborn教授得到了伦敦大学学院医院NIHR生物医学研究中心的支持，他也得到了NIHR应用健康研究和护理领导合作(CLAHRC)在Barts Health NHS Trust的北泰晤士的部分支持。
{"title":"Primary care management of cardiovascular risk for people with severe mental illnesses: the Primrose research programme including cluster RCT","authors":"D. Osborn, A. Burton, K. Walters, L. Atkins, T. Barnes, R. Blackburn, T. Craig, H. Gilbert, B. Gray, S. Hardoon, Samira Heinkel, R. Holt, R. Hunter, C. Johnston, M. King, J. Leibowitz, L. Marston, S. Michie, R. Morris, S. Morris, I. Nazareth, R. Omar, I. Petersen, R. Peveler, V. Pinfold, F. Stevenson, E. Zomer","doi":"10.3310/PGFAR07020","DOIUrl":"https://doi.org/10.3310/PGFAR07020","url":null,"abstract":"\u0000 \u0000 Effective interventions are needed to prevent cardiovascular disease (CVD) in people with severe mental illnesses (SMI) because their risk of CVD is higher than that of the general population.\u0000 \u0000 \u0000 \u0000 (1) Develop and validate risk models for predicting CVD events in people with SMI and evaluate their cost-effectiveness, (2) develop an intervention to reduce levels of cholesterol and CVD risk in SMI and (3) test the clinical effectiveness and cost-effectiveness of this new intervention in primary care.\u0000 \u0000 \u0000 \u0000 Mixed methods with patient and public involvement throughout. The mixed methods were (1) a prospective cohort and risk score validation study and cost-effectiveness modelling, (2) development work (focus groups, updated systematic review of interventions, primary care database studies investigating statin prescribing and effectiveness) and (3) cluster randomised controlled trial (RCT) assessing the clinical effectiveness and cost-effectiveness of a new practitioner-led intervention, and fidelity assessment of audio-recorded appointments.\u0000 \u0000 \u0000 \u0000 General practices across England.\u0000 \u0000 \u0000 \u0000 All studies included adults with SMI (schizophrenia, bipolar disorder or other non-organic psychosis). The RCT included adults with SMI and two or more CVD risk factors.\u0000 \u0000 \u0000 \u0000 The intervention consisted of 8–12 appointments with a practice nurse/health-care assistant over 6 months, involving collaborative behavioural approaches to CVD risk factors. The intervention was compared with routine practice with a general practitioner (GP).\u0000 \u0000 \u0000 \u0000 The primary outcome for the risk score work was CVD events, in the cost-effectiveness modelling it was quality-adjusted life-years (QALYs) and in the RCT it was level of total cholesterol.\u0000 \u0000 \u0000 \u0000 Databases studies used The Health Improvement Network (THIN). Intervention development work included focus groups and systematic reviews. The RCT collected patient self-reported and routine NHS GP data. Intervention appointments were audio-recorded.\u0000 \u0000 \u0000 \u0000 Two CVD risk score models were developed and validated in 38,824 people with SMI in THIN: the Primrose lipid model requiring cholesterol levels, and the Primrose body mass index (BMI) model with no blood test. These models performed better than published Cox Framingham models. In health economic modelling, the Primrose BMI model was most cost-effective when used as an algorithm to drive statin prescriptions. Focus groups identified barriers to, and facilitators of, reducing CVD risk in SMI including patient engagement and motivation, staff confidence, involving supportive others, goal-setting and continuity of care. Findings were synthesised with evidence from updated systematic reviews to create the Primrose intervention and training programme. THIN cohort studies in 16,854 people with SMI demonstrated that statins effectively reduced levels of cholesterol, with similar effect sizes to those in general population studies over 12–24 months (mean decrease 1.2 mmol/l). Cluster RCT","PeriodicalId":32307,"journal":{"name":"Programme Grants for Applied Research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2019-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72502039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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