Annette King

A quasi-experimental controlled evaluation of the impact of a hospice rapid response community service for end-of-life care on achievement of preferred place of death

Background: Rapid response services operating 24 h a day have been advocated in UK health policy to support dying patients at home, though there is limited evidence of their effectiveness. Aim: To assess the impact of a rapid response hospice at home service (intervention) on people dying in their preferred place, and carer quality of life, compared to usual care (control). Design: Quasi-experimental multi-centred controlled evaluation. Patient data were collected from hospice records; carers completed postal questionnaires to report quality of life, anxiety and depression. Setting and participants: Community served by one hospice (three contiguous sites) in South East England; 953 patients who died with a preferred place of death recorded and 64 carers who completed questionnaires. Results: There was no significant difference between control and intervention groups in proportions achieving preferred place of death (61.9% vs 63.0% (odds ratio: 0.949; 95% confidence interval: 0.788–1.142)). People living at home alone were less likely to die where they wanted (0.541; 95% confidence interval: 0.438–0.667). Carers in the intervention group reported worse mental health component summary scores (short form-12, p = 0.03) than those in the control group; there were no differences in other carer outcomes. Conclusion: The addition of a rapid response hospice at home service did not have a significant impact on helping patients to die where they wanted in an area already well served by community palliative care. Recording preferences, and changes over time, is difficult and presented challenges for this study.

Developing a shared decision support framework for aortic root surgery in Marfan syndrome

Objective The study is an early phase of development of a decision support framework for people with Marfan syndrome who are anticipating prophylactic aortic root surgery. Implications of the timing and the nature of the operation chosen were previously elicited in focus groups. In this step, we explored the range of relative values placed by individuals on the implications of decisions made about surgery. Methods Following the principles of the Ottawa Decision Support Framework, eight questions in the general form ‘How important is it to you …’ were framed by a panel. Marfan people, families and specialist doctors answered online. Quantitative and qualitative analyses were performed. Results Worldwide, 142 responses were received including 25 specialist doctors. Respondents were 55% female and 46% had previous aortic root surgery. Overall, active lifestyle was more important to males (p=0.03). Patients placed more importance than doctors on not deferring surgery (p=0.04) and on avoidance of anticoagulation in the interests of childbearing (p=0.009). Qualitative analysis showed differing but cogently reasoned values that were sometimes polarised, and mainly driven by the wish to maintain a good quality of life and active lifestyle. Conclusions Given the cogency of these viewpoints, people anticipating root replacement surgery should have ample opportunity to express them and to have them acknowledged ahead of a consultation when they can then be fully explored in a mutually informed forum. If they differ from local medical practice, they can then be discussed in the process of reaching shared and individualised decisions.

Evaluating a third sector community service following stroke

Purpose – The purpose of this paper is to evaluate the needs of stroke survivors and the impact of a Life After Stroke service on users, and to explore the effectiveness of a service provided by a third sector organisation working closely with other stroke service provision. Design/methodology/approach – Review of management documents and reports, polling views of 128 service users through a nationally recognised survey designed to assess the service impact, and using interviews and focus groups to gain a deeper understanding of the value and impact of the service from a range of professionals involved with delivering stroke care. Survey response rates were similar to that experienced nationally and the age/gender profile of respondents suggested they were representative. Findings – The service was highly regarded by service users as providing personal, practical and emotional support from people who were knowledgeable and accessible in acute hospitals. From the wider perspective, professionals involved i...

Parent/carer views on personal health budgets for disabled children who use rehabilitation therapy services

Abstract Personalised budgets are promoted as the person-centred alternative to generically provided services. Nine parents/carers of disabled children (aged 18 years or younger) who accessed at least two rehabilitation therapy services (physiotherapy, occupational therapy, and speech and language therapy) were recruited from one region in England. Focus group/interviews explored their views on the proposed introduction of personalised budgets. Parents and carers viewed a personal health budget with caution and perceived benefits were tempered by their experiences of current provision. Concerns were raised about entitlement and how a personal budget would work in practice.