ObjectiveTo identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature.DesignA mixed methods rapid review.MethodsPUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned.OutcomesThe impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions.Results18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity.ConclusionsThis rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.

IntroductionThere can be a mismatch between what the public see as important unanswered questions and those which are actually researched. The Palliative and end of life care Priority Setting Partnership, facilitated by the James Lind Alliance (JLA), identified and prioritised questions about palliative and end of life care that people in the last years of life, current/bereaved carers and professionals feel are important for research to address.Aim(s) and method(s)A UK public survey (December 2013–April 2014) identified questions about support, care and treatment of people in the last years of life. Some 83 questions were formulated and prioritised via a second public survey. The resulting top 28 were prioritised in a workshop comprising patients, carers and clinicians to determine the top 10 research questions.Results1403 surveys were returned. Most respondents identified as bereaved family/friends and health or social care professionals. Respondents submitted a range of questions on services, communication, symptoms and perceptions of palliative care. 1331 respondents completed the second survey. In November 2014, 24 people participated in a workshop to prioritise the ‘top 10’ questions (using the Nominal Group Technique) which will be reported in January 2015.Responses that are ‘out of scope’ of the JLA protocol will be analysed and reported separately.Conclusion(s)The ‘top 10’ uncertainties will guide project partners' and other organisations' funding strategies, ensuring that future research is relevant to palliative care populations. We will discuss how the results of this project will guide the palliative and end of life care research agenda in future.

BackgroundPalliative and end of life care research is an underdeveloped research area [National end of life care strategy, 2008; Rapid Review NCRI, 2010].The importance of involving patients and clinicians in the setting of research questions to avoid funding research that is of low relevance to the end users of the research findings has been highlighted [Chalmers and Glasziou, 2009].Initiated by Marie Curie Cancer Care, a large number of organisations have come together to form the ‘Palliative and end of life care Priority Setting Partnership’ (PeolcPSP) with the James Lind Alliance. The PeolcPSP is co-funded by Marie Curie Cancer Care, Chief Scientist Office, NIHR, MND Association, NISCHR, Macmillan Cancer Support, CR-UK, HSCNI, MRC and ESRC.AimsThe aim of the PeolcPSP is to identify unanswered questions about palliative and end of life care and then prioritise those that people who are likely to be in the last years of life, current and bereaved carers and professionals working with people at the end of life agree are the most important.MethodsThe process commences with a survey. People are asked to submit questions or ‘evidence uncertainties’ about care, support and treatment for people with life-limiting conditions who may be in the last years of life and about support for current or bereaved carers.Survey responses are categorised by an information scientist who also checks whether any of the submitted evidence uncertainties have already been addressed by existing evidence. Priority setting workshops with patients, carers and professionals are carried out to determine the ‘top ten’ evidence uncertainties in any category, using the Nominal Group Technique.ResultsThe results of the PeolcPSP will inform partners' research strategies and will allow funding bodies to target limited funds to research priorities of the end user.We will report preliminary findings on the process and types of questions proposed.

IntroductionIn 2015 the Palliative and end of life care Priority Setting Partnership (PeolcPSP), facilitated by the James Lind Alliance, published a top-ten list of unanswered questions relating to palliative and end-of-life care research. These were ranked in accordance with responses from people in the last years of life, current/bereaved carers and professionals working with people at the end-of-life.The highest ranked question was: “What are the best ways of providing palliative care outside of working hours to avoid crises and help patients stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.”AimThis project presents how current research in the UK is addressing this question.MethodsThrough a grant mapping process, links have been identified between the PSP questions and current research, using the UK Clinical Research Collaboration’s (UKCRC) Health Research Classification System dataset, providing a snapshot of 2014 data. These links have been coded from weak to interventional.ResultsThis grant mapping process highlights that although out of hours care is ranked most important by carers and health care professionals, it receives very little research attention. In 2014, no current research proposed an intervention to address the question, and only four grants representing 0.03% of health research spend directly addressed out of hours palliative care. They were funded by the Department of Health and Marie Curie.ConclusionThis work highlights the need for future research funding to focus on out of hours palliative care.

More and more people are living with the consequences of cancer and its treatment (living with and beyond cancer), yet the level of relevant research is low compared to other types of cancer research in the UK. NCRI aims to increase the level of research in this area and to ultimately improve the lives of those affected by cancer. Undefined research priorities in this broad area has been a barrier to research. The 2015 NHS Independent Cancer Taskforce report also recommends defining research priorities and to enable this research to happen. To address this barrier the NCRI has undertaken a James Lind Alliance Priority Setting Partnership (PSP) to identify priorities that matter most to people affected by cancer and the health and social care professionals.A PSP consists of patients and carers, health and social care professionals. PSPs have several stages and begin with a UK-wide survey to gather questions about uncertainties in living with and beyond cancer. Once the results were analysed, an interim exercise takes place to further prioritise the uncertainties. The last stage is a final workshop where partners debate and finally arrive at a top 10 list of shared uncertainties.The living with and beyond cancer PSP received 3500 questions submitted by people affected by cancer and healthcare professionals. Through a 18-month established rigorous process, the questions are prioritised down to the Top 10 living with and beyond cancer priorities for research in June 2018. This is the first time that clear research priorities have been identified in this area. They are the most impactful research questions that will help improve the lives of people affected by cancer. The Top 10 uncertainties will be publicised widely to ensure that researchers and those who fund research really understand what matters to people affected by cancer. The top uncertainties will be promoted to many research organizations and relevant funders in the UK. We anticipate they will directly influence future research. Citation Format: Feng Li, Adrienne Morgan, Angela McCullagh, Anne Johnson, Ceinwen Giles, Diana Greenfield, Graeme Crawford, Jacqui Gath, Jane Lyons, Jervoise Andreyev, Jonathan Tobutt, Julia Tugwell, Karen Robb, Laura Cove-Smith, Lindsey Bennister, Natalie Doyle, Nicolas Lee, Rebecca Nash, Richard Simcock, Richard Stephens, Sabine Best, Susan Moug, Kristina Staley, Sandra Regan, Patricia Ellis, Stuart Griffiths, Ian Lewis. Top 10 living with and beyond cancer research priorities [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 3348.

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