Research Priority Setting in Palliative and End of Life Care: The James Lind Alliance Approach Consulting Patients, Carers and Clinicians

Best, Sabine; Tate, Theresa; Noble, Bill; Smith, Rhiannon; Tuft, Jennifer; Tracey, Noel; McCullugh, A.; Eley, J. William; Black, Joanna; Stockton, Mike; Cheeseley, A.; Berry, Lauren; Burton, Claire; Deschamps, Ann; Stevens, Elaine; Penny, Alison; McEnhill, Linda; McNair, Alan; Cupid, Belinda; Maseo, B.; Chapman, Deborah; McIllfatrick, S.; Nelson, Annmarie; Sivell, Stephanie; Baillie, Jessica; Godwin, Jordan Van; Candy, B; Beaumont, Nancy; Cowan, Katherine

doi:10.1136/bmjspcare-2014-000838.3

Cited by 15 publications

(22 citation statements)

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“…The top four research themes (see Table 2 ) identified in the workshops represent important areas for future research. They broadly overlap with the research priorities identified by the Palliative and end of life care Priority Setting Partnership (PeoPSP) in the UK, which used surveys and NGT to gain consensus from 1043 patients, carers and professionals [ 61 ]. It is to these themes that we now turn.…”

Section: Discussionmentioning

confidence: 99%

“…It will be important to assess how the proposed research priorities align with the priorities of national agencies and governments across Europe (for example, with national palliative care research agendas, such as the UK Palliative and end of life care Priority Setting Partnership [ 61 ]) as this would give further leverage for obtaining research support. Careful consideration is then needed to determine which of the identified research themes (or sub-themes) need European-wide collaborations, and which specific research questions are best answered within national borders, given the wide variation in service provision and palliative care development [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

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Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

et al. 2016

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BackgroundEmpirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe.MethodsA two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance.ResultsA total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities.ConclusionsThe proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

et al. 2016

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“…Priority setting methods have been established and used by almost 30 JLA PSPs, including prostate cancer [19], vitiligo [20], palliative and end of life care [21], childhood neurodisability [22], and dystrophic epidermolysis bullosa [23]. Details of the methods agreed and adopted can be found in a number of publications [24][25][26][27][28], and therefore only a brief summary is presented here.…”

Section: Methodsmentioning

confidence: 99%

Research priorities in mesothelioma: A James Lind Alliance Priority Setting Partnership

Stephens¹,

Whiting²,

Cowan³

2015

Lung Cancer

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The top 10 questions cover a wide portfolio of research (including assessing the value of immunotherapy, individualised chemotherapy, second-line treatment and immediate chemotherapy, monitoring patients with pleural thickening, defining the management of ascites in peritoneal mesothelioma, and optimising follow-up strategy). This list is an invaluable resource, which should be used to inform the prioritisation and funding of future mesothelioma research.

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“…15 A clear understanding of the sources of unsafe care has emerged as a top research priority for patient groups and policymakers. 16…”

Section: Introductionmentioning

confidence: 99%

Quality improvement priorities for safer out-of-hours palliative care: Lessons from a mixed-methods analysis of a national incident-reporting database

et al. 2018

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Background: Patients receiving palliative care are often at increased risk of unsafe care with the out-of-hours setting presenting particular challenges. The identification of improved ways of delivering palliative care outside working hours is a priority area for policymakers. Aim: To explore the nature and causes of unsafe care delivered to patients receiving palliative care from primary-care services outside normal working hours. Design: A mixed-methods cross-sectional analysis of patient safety incident reports from the National Reporting and Learning System. We characterised reports, identified by keyword searches, using codes to describe what happened, underlying causes, harm outcome, and severity. Exploratory descriptive and thematic analyses identified factors underpinning unsafe care. Setting/participants: A total of 1072 patient safety incident reports involving patients receiving sub-optimal palliative care via the out-of-hours primary-care services. Results: Incidents included issues with: medications (n = 613); access to timely care (n = 123); information transfer (n = 102), and/or non-medication-related treatment such as pressure ulcer relief or catheter care (n = 102). Almost two-thirds of reports (n = 695) described harm with outcomes such as increased pain, emotional, and psychological distress featuring highly. Commonly identified contributory factors to these incidents were a failure to follow protocol (n = 282), lack of skills/confidence of staff (n = 156), and patients requiring medication delivered via a syringe driver (n = 80). Conclusion: Healthcare systems with primary-care-led models of delivery must examine their practices to determine the prevalence of such safety issues (communication between providers; knowledge of commonly used, and access to, medications and equipment) and utilise improvement methods to achieve improvements in care.

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Research Priority Setting in Palliative and End of Life Care: The James Lind Alliance Approach Consulting Patients, Carers and Clinicians

Cited by 15 publications

References 0 publications

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

Research priorities in mesothelioma: A James Lind Alliance Priority Setting Partnership

Quality improvement priorities for safer out-of-hours palliative care: Lessons from a mixed-methods analysis of a national incident-reporting database

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