Palliative care supports the physical, emotional, social and spiritual needs of people with serious life-limiting illness. Future research must align with the priorities of people approaching the end of their lives, and those close to them.
To undertake a refresh of the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership, to identify and prioritise areas for future research.
The James Lind Alliance process was applied, between May 2023 and February 2025. An initial online survey collected areas for future research from participants. These were synthesised into a long list of questions and shortlisted through a second online survey. Final ranking of priorities was achieved using an adapted Nominal Group Technique within a prioritisation workshop.
People living with serious life-limiting illnesses, carers, friends and family members supporting them, bereaved people, health and social care professionals, volunteers working in palliative and end-of-life care and members of the public.
1032 and 626 responses were received to survey 1 and 2, respectively. 20 people with lived and professional experience attended the prioritisation workshop. An updated list of 24 priorities for palliative and end-of-life care research was produced.
The priorities reflect the range of issues shaping end-of-life experiences and serve as a call to action for researchers and funders.
To develop an updated core dataset for acute stroke care in Ireland, informed by international audit benchmarking and national stakeholder consensus, for integration into the Irish National Audit of Stroke (INAS).
Scoping review and three-round Delphi process.
Medline Ovid, Embase, CINAHL EBSCOhost, Google Scholar, audit websites and grey literature (2010–2024). Additional audit documentation was obtained via direct author contact.
National stroke audits or registries with a country-wide scope, ≥1 year of continuous data collection and active in 2021 were eligible. Only audits covering acute stroke care were included in this study phase. All records were screened for inclusion.
Audit documentation (data dictionaries, item definitions and contextual metadata) was retrieved from eligible audits. Acute stroke care items were extracted, charted and benchmarked against existing INAS items and each other to identify commonalities and gaps. Frequently collected international items (appearing in ≥4 audits/registries) were shortlisted. A three-round Delphi process with 24 national stakeholders (clinicians, nurses, allied health professionals, researchers, policymakers and patient representatives) was conducted to audit and refine the dataset through structured, anonymised item rating, iterative feedback and consensus-building discussions.
Twenty-one eligible international stroke audits/registries were identified, yielding ~4500 audit items. Benchmarking against existing INAS items (n=103), frequently collected international items (n=97) and expert-suggested items (n=22) informed the Delphi consultation. The final dataset expanded INAS by 18 items, totalling 86 acute care and 35 thrombectomy-specific items. New additions included stroke-related complications and risk factor documentation.
This structured, consensus-led process resulted in an internationally benchmarked, stakeholder-informed core dataset to enhance standardised stroke auditing in Ireland. The expanded dataset supports enhanced clinical monitoring, quality improvement and health system planning. This approach may inform audit development and research efforts in other contexts.
There remains little consensus or guidelines for the clinical management of traumatic orbital fractures (OFx). The OFx Registry aims to increase real-world clinical evidence for the treatment of OFx via prospective, multicentre, international data collection. The primary objectives of this observational cohort study are (1) to document current treatment practices for and (2) to assess the outcomes of surgical and non-surgical treatment of orbital floor and/or medial wall fractures.
Approximately 300 adult patients presenting with a displaced OFx in the orbital floor and/or medial wall will be enrolled prospectively over a recruitment period of ~36 months. All eligible patients treated either surgically or non-surgically as per routine standard of care will have follow-up assessments at 6 weeks, 3 months and 6 months post-treatment. Demographic data, injury details, treatment details and outcome measures will be documented in a cloud-based database. Outcome measures include clinical outcomes (eg, diplopia, extraocular motility, and condition of the eyelid, globe and soft tissues), radiological outcomes from collected images, patient-reported outcomes (eg, Diplopia Questionnaire and the newly developed AO Craniomaxillofacial (CMF) Injury Symptom Battery) and complications. A statistical analysis plan will be prepared before final analysis summarising the descriptive statistics to be used for data assessment. Appropriate research questions and statistical tests may be applied additionally, depending on the availability and quality of data collected.
Ethics approval was obtained before patients were enrolled at each participating site. Patient enrolment followed an informed consent process approved by the responsible ethics committee. Peer-reviewed publications are planned to disseminate the study results.