Abstract 3348: Top 10 living with and beyond cancer research priorities

Abstract

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.

Prevalence and determinants of depression up to 5 years after colorectal cancer surgery: results from the ColoREctal Wellbeing (CREW) study

“…The importance of this work is highlighted by the dearth of evidence examining the long‐term psychological impacts in people living with and beyond cancer [ 3 ], including people with CRC [ 16 ]. The need for research into the short‐ and long‐term psychological impacts of cancer and its treatment has been identified as a Top 10 research priority in the UK [ 60 ] and our analysis contributes knowledge to this for two crucial time points in the CRC care pathway.…”

“…The importance of this work is highlighted by the dearth of evidence examining the long-term psychological impacts in people living with and beyond cancer[3], including people with CRC[16]. The need for research into the short-and long-term psychological impacts of cancer and its treatment has been identified as a Top 10 research priority in the UK[60] and our analysis contributes knowledge to this for two crucial time points in the CRC care pathway.In summary, our results indicate that depression is an enduring problem in people with nonmetastatic CRC even at 5 years after surgery. Before surgery it affects one in five people and one in seven people at 5 years after surgery, both of which are higher than reported in the general population.…”

Ovarian transposition in rectal cancer: uncertain benefit at a high price

“…Although Shyasree and colleagues have not demonstrated the oncological safety of this procedure, their article is a welcome reminder that the long‐term impact of rectal cancer treatment remains a relatively neglected area of research and is likely to be disproportionately felt by patients diagnosed with cancer at a younger age. Furthermore, because rectal cancer is relatively uncommon in younger patients (approximately 120 women under 40 are diagnosed with rectal cancer per year in the UK) [7], their views may not be adequately represented even in projects that have prioritized the patient voice, such as the National Cancer Research Institute living with and beyond cancer initiative [8], and core outcome sets for colorectal cancer and pelvic radiotherapy [9,10].…”