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.
IntroductionThis study uses ethnographic methods to explore multidisciplinary team decision-making with a focus on prognoses at the end of life.Previous research highlights that patients carers and clinicians value accurate prognostication. Both the recognition of dying and communicating this to patients and carers were acknowledged as key unanswered research questions in the PeolcPSP.Providing quality palliative care requires different specialisms to meet the needs of the whole person – medically but also spiritually emotionally and socially. Multidisciplinary teams are considered vital to ensure that care is of the highest quality and that decisions made are evidence-based.AimThis study aims to understand how palliative multidisciplinary teams form collective judgements about prognoses.MethodsEthnography provided an appropriate methodology for this study as it facilitates the documentation of prognostic estimates in MDTs capturing insights into the perspectives and practices of team members exploring the influences of the structure location and nature of the meetings. Through observations and semi-structured interviews ethnography allowed an interrogation of the issues in decision-making.Results and next stepsPreliminary findings have highlighted that different disciplines use prognoses in diverse ways. For example social workers and discharge administrators use prognoses to fast-track care decisions and funding favouring an accurate numerical score whilst the medical team use prognoses as a suggestion of appropriate care preferring fluid descriptive terms.The findings will be used to will inform recommendations for future guidelines to MDTs to improve communication and decision making while discussing the prognoses of patients at the end of life.References. Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: A systematic literature review.Patient Education & Counseling2009;77(2):179–86.. Steinhauser KE, Christakis NA, Clipp EC, et al.Preparing for the end of life: Preferences of patients families physicians and other care providers. Journal of Pain & Symptom Management2001;22(3):727–37.. Kutner JS, Steiner JF, Corbett KK, et al. Information needs in terminal illness. Social Science & Medicine1999;48(10):1341–52.. Steinhauser KE., Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients family physicians and other care providers. JAMA2000;284(19):2476–82.. The Palliative and end of life care Priority Setting Partnership (PeolcPSP). Final Report (January 2015). https://palliativecarepsp.files.wordpress.com/2015/01/peolcpsp_final_report.pdf. Blazeby J, Wilson L, Metcalfe C, et al. Analysis of clinical decision making in multi-disciplinary cancer teams. Annals of Oncology2006;17:457–60.
This article reports on a workshop held in London UK in November 2006 to discuss future research priorities in the visual impairment sector in the UK. The workshop was held under the auspices of the VISION 2020 UK Social Research Group, a collaborative group of charitable partners who commission social research in the sector. The broad purpose of the workshop was to bring people from the field of visual impairment together to discuss why research is needed and, if it is agreed that it is needed, what kind of research should be done. The report presents a summary of the presentations and discussions from that day, including a list of the identified research themes and questions that were generated.
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