How current UK research addresses out of hours palliative care

Abstract

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.

Palliative and end-of-life care research in Scotland 2006–2015: a systematic scoping review

“…In the current review, very few papers on out-of-hours care were identified, despite this being identified as the number one priority for research according to the JLA [ 98 ]. Given the current dearth of evidence on out-of-hours and continuity of care as well as the national focus on improving out of hours care [ 101 ], this will remain an important direction for research in the future. The crucial link between eHealth integration improvements and the quality of out-of-hours palliative care provision is also an important potential area for research.…”

Disseminating research findings using a massive online open course for maximising impact and developing recommendations for practice

“…There is a great need for access to good out of hours palliative care [22] services, but this was recognised more by the MOOC participants than by the members of the consensus group. Once again, this may reflect the daily experience of staff.…”

Qualified and motivated, but limited by specialty-specific barriers: a national survey of UK Palliative Medicine consultants research experience

“…In the UK, it currently receives less than 1% of all cancer research spending, despite one-third of hospital inpatients being in the last year of life. 16 Both palliative care provision and research are dependent on charitable giving and consequently, activity fluctuates significantly with the economic climate. For example, the COVID-19 pandemic resulted in suspension of many charity-funded research grants.…”