“The Dementia Iceberg”: New Bupa report uses PSSRU research

Worldwide there are an estimated 36.5 million people with dementia, a number that is expected to rise to 115 million people by 2050. In high-income countries, only 20 to 50 per cent of people with dementia have a formal diagnosis, with the diagnosis rate in England and Wales currently at 43.8 per cent. Many people are also diagnosed late, often at a time of crisis such as an emergency hospital admission

Whose job? The staffing of advance care planning support in twelve international healthcare organizations: a qualitative interview study

Background ACP involving a facilitated conversation with a health or care professional is more effective than document completion alone. In policy, there is an expectation that health and care professionals will provide ACP support, commonly within their existing roles. However, the potential contributions of different professionals are outlined only broadly in policy and guidance. Research on opportunities and barriers for involving different professionals in providing ACP support, and feasible models for doing so, is currently lacking. Methods We identified twelve healthcare organizations aiming to offer system-wide ACP support in the United States, Canada, Australia and New Zealand. In each, we conducted an average 13 in-depth interviews with senior managers, ACP leads, dedicated ACP facilitators, physicians, nurses, social workers and other clinical and non-clinical staff. Interviews were analyzed thematically using NVivo software. Results Organizations emphasized leadership for ACP support, including strategic support from senior managers and intensive day-to-day support from ACP leads, to support staff to deliver ACP support within their existing roles. Over-reliance on dedicated facilitators was not considered sustainable or scalable. We found many professionals, from all backgrounds, providing ACP support. However, there remained barriers, particularly for facilitating ACP conversations. A significant barrier for all professionals was lack of time. Physicians sometimes had poor communication skills, misunderstood medico-legal aspects and tended to have conversations of limited scope late in the disease trajectory. However, they could also have concerns about the appropriateness of ACP conversations conducted by others. Social workers had good facilitation skills and understood legal aspects but needed more clinical support than nurses. While ACP support provided alongside and as part of other care was common, ACP conversations in this context could easily get squeezed out or become fragmented. Referrals to other professionals could be insecure. Team-based models involving a physician and a nurse or social worker were considered cost-effective and supportive of good quality care but could require some additional resource. Conclusions Effective staffing of ACP support is likely to require intensive local leadership, attention to physician concerns while avoiding an entirely physician-led approach, some additional resource and team-based frameworks, including in evolving models of care for chronic illness and end of life

Curriculum online: final report

The Department for Education and Skills (DfES) commissioned NatCen and the University of Bristol to conduct a four-year evaluation of curriculum online, beginning in 2002. This is the final evaluation report for the programme, reviewing outcomes from the research

Advance care planning in England: is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People

Objectives To explore whether advance care planning is associated with place of death in England, as well as with sufficiency of support to care for a dying person at home, overall quality of care and pain management. Methods We undertook secondary analysis of data from the National Survey of Bereaved People, 2013, based on a stratified random sample of 49 607 people selected from 150 111 eligible registered deaths (n=22 661, 46% response rate). The indicator of advance care planning used was having expressed a preference for place of death and this being recorded by healthcare staff. Analysis was conducted using logistic regression models. Results Decedents with a recorded preference for place of death had significantly greater odds of dying at home rather than in hospital (OR 6.25; 99% CI 5.56 to 7.14) and in a care home rather than in hospital (OR 2.70; 99% CI 2.33 to 3.13). They also had significantly greater odds of receiving sufficient support to be cared for and to die at home, of receiving ‘outstanding’ or ‘excellent’ care, and of having pain relieved ‘completely, all the time’ while being cared for at home. Conclusions Advance care planning was found to be strongly associated with lower rates of hospital death and a range of quality outcomes. These findings provide support for the emphasis on advance care planning in end of life care policy in England, while also suggesting the need for further research to better understand the mechanisms underlying these relationships

The economic evidence for advance care planning: systematic review of evidence

Background: Advance care planning (ACP), a process of discussion and review concerning future care in the event of losing capacity. Aimed at improving the appropriateness and quality of care, it is also often considered a means of controlling health spending at the end of life. Aim: To review and summarise economic evidence on advance care planning. Design: A systematic review of academic literature. Data sources: We searched for English language peer-reviewed journal articles, 1990 to 2014, using relevant research databases; PubMed; ProQuest; CINAHL Plus with Full Text; EconLit; PsycINFO; SocINDEX with Full Text and International Bibliography of the Social Sciences. Empirical studies using statistical methods in which ACP and costs are analytic variables were included. Results: There are no published cost-effectiveness studies. Included studies focus on health care savings, usually associated with reduced hospital care. ACP may be associated with healthcare savings for some people, in some circumstances, such as people living with dementia in the community, in nursing homes or in areas with high end of life care spending. Conclusions: There is need for clearer articulation of the likely mechanisms by which ACP can lead to reduced care costs or improved cost-effectiveness, particularly for people who retain capacity. There is a need to consider wider costs, including intervention costs and the costs of substitute health, social and informal care. There is no evidence that ACP is more expensive. Economic outcomes should be considered in the context of quality benefits

Monitoring and evaluation of family interventions (Information on families supported to March 2010) RR044

Josie Dixon, Vera Schneider, Cheryl Lloyd, Alice Reeves, Clarissa White, Wojtek Tomaszewski, Rosie Green and Eleanor Irelan

Monitoring and evaluation of family interventions: information on families supported to March 2010 (Research report DFE-RR044)

"This report updates and builds on the previous research by presenting and analysing FIIS [Family intervention Information system] data provided by family intervention staff up to and including 31 March 2010. The report is primarily based on simple descriptive statistics which provide a summary of the quantitative evidence. In addition statistical modelling (logistic regression) was used to look at the factors associated with successful and unsuccessful outcomes." - Page 14

Delivering advance care planning support at scale: a qualitative interview study in twelve international healthcare organisations

Context: Globally, populations are ageing, with people increasingly likely to die with chronic progressive illness. In this context, there is widespread interest in advance care planning (ACP), where people are supported to think about and express preferences concerning their future care. However, to date there has been limited systematic implementation. Objectives: In a purposive sample of 12 international health and care organisations working to provide system-wide ACP support, we examined organisational aims, leaders’ perspectives on the economic case and promising approaches for efficiently delivering ACP support at scale. Methods: In-depth qualitive interviews (average 13 in each organisation) with leaders, ACP specialists and front-line staff. Findings: Organisational aims for ACP support were multiple and complex; they included optimizing patient and family care, supporting staff and mitigating risks of complaints from bereaved families, reputational damage, poor staff morale and potential legal challenges. The economic case comprised intrinsic benefits for patients, families and staff; averting costs associated with potential risks; and making best use of resources by reducing reactive care and provision of unwanted, low-value treatments. A degree of staff specialism, team-based delivery, use of decision aids, group-based facilitations, public health approaches and supportive parallel system changes and initiatives appear likely to support the efficient and effective delivery of ACP support at scale. Limitations: We recruited organisations using snowball sampling. Quantitative information was inquired about to complement data from interviews but availability was limited. Implications: ACP support may be usefully understood as both an individual- and system-level intervention. We identify various approaches for delivering ACP support more efficiently at scale