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.
by Honor Morris, Maria Duaso, Marilyn Ijeomah-Orji, Lisa Akester, Jenny Roddy, Jayne Samples, Kate Heighway, Nigel Simpson, Tomasina Stacey
BackgroundOnline peer support groups offer virtual spaces where members can share experiences, seek advice, and offer mutual support. While in-person peer support in pregnancy has shown benefits such as improved well-being and reduced isolation, limited research has explored online peer support groups. This scoping review aims to examine the types, contexts, and perceived benefits of online peer support for pregnant people.
MethodsA systematic search was conducted in five databases (Embase, Medline PsychInfo, MIDIRS and CINAHL) from inception to December 2024. Eligible studies examined online peer support accessed by pregnant participants with direct interaction. Thematic analysis was applied to identify structural factors influencing the functioning of online peer support groups. The Langford Conceptual Analysis of Social Support was used to categorise type of support.
FindingsA total of 27 studies were included. The findings highlighted several structural factors that influence the functioning of online peer support groups for pregnant people. Group size was identified as a key factor, with smaller groups promoting more meaningful interactions. Active moderators supported participant interaction and ensured information quality, while privacy settings, such as closed groups and anonymised participation, fostered safe discussions. Emotional support, such as expressions of empathy, reassurance, and encouragement, was the most reported benefit, followed by informational and appraisal support. Instrumental support was observed less frequently.
ConclusionThis scoping review identified key structural factors shaping the design and functioning of online peer support groups for pregnant people. Group size, active moderation, and privacy settings influenced participation and engagement. Further research is recommended to explore how these structural elements impact long-term engagement and overall effectiveness for pregnant people.This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR205347). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
This project explores the feasibility of setting up a neuropsychiatric de-identified database (DiD) and a Research Register (RR) to collect, analyse, monitor and systematically report clinical data for people with intellectual disabilities (PwIDs) and epilepsy.
A multicentre project designed to collect de-identified data from clinical records at three adult ID specialist services in England and Wales and to develop an RR of PwID and epilepsy. Patients added to the DiD will be identified from patient clinic lists, clinic letters, in-house databases and electronic systems. Patients to be added to the RR will also be identified through attendance for regular review at clinic appointments. The collected data will be entered into the Research Electronic Data Capture (REDCap) database. Personal details of PwID and their consultees will also be collected from participants who consent to be on the RR. Around 600 PwID and epilepsy (200 per site) will be added to the DiD at the three sites, while around 45–60 participants (15–20 per site) are anticipated to be added to the RR. Data analysis will involve using descriptive statistics to summarise feasibility outcomes, such as screening and recruitment rates, as well as the completeness of the collected data. The characteristics of the participants (demographic, ID classification, clinical, epilepsy history and antiseizure medication) will be summarised descriptively. Progression will be assessed using the Red/Amber/Green stop-go criteria to determine if a national register should be created.
Ethical approval (24/NW/0210) has been obtained from the Northwest-Haydock Research Ethics Committee and the University of Plymouth Faculty Research Ethics and Integrity Committee (reference no. 5284). The project is funded by Jazz Pharmaceuticals as an independent investigator-initiated support grant and, as such, has received independent peer review.
by Ashvene Sureshkumar, Robert Simpson, Mark Bayley, Monika Kastner, Jillian Scandiffio, Emilia Main, Claire Zhang, Harzaan Gnanakaran, Joshua Wijeratne, Alesha Saxena, Sarah Munce
ObjectiveThis paper aims to standardize a scoping review protocol for completion of a scoping review. The proposed scoping review aims to: 1) determine the extent of the literature on which implementation strategies have been used to develop, deliver, and sustain psychological interventions for people with multiple sclerosis (PwMS) and 2) investigate how equity, diversity, inclusion and accessibility considerations are embedded within these implementation strategies and psychological interventions more broadly.
IntroductionPeople with multiple sclerosis experience high levels of stress, anxiety and depression. Psychological interventions, such as mindfulness-based interventions have been shown to be effective in managing these symptoms, yet their implementation in clinical practice is underexplored. Investigating the implementation of psychological interventions can help contextualize the efficacy and impact of these programs for PwMS. This proposed review aims to fill this knowledge gap by determining which implementation strategies have been used to develop and deliver psychological interventions for PwMS.
MethodsThis scoping review will follow the Joanna Briggs Institute (JBI) methodology and reporting will follow the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping review (PRISMA-ScR). The search will be conducted across MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsychInfo (Scopus). Two reviewers will independently conduct screening and data extraction in duplicate, with any disagreements resolved through discussion and involvement of a third reviewer. Data extraction will be guided by the JBI template. Quantitative data will be reported descriptively, and a conventional content analysis will be undertaken for qualitative data.
Inclusion criteriaThis scoping review will include studies globally published in peer-reviewed academic journals in English involving PwMS that report on implementation strategies for live, professional-led psychological interventions. Pharmacological studies or studies focusing only on effectiveness of psychological interventions will be excluded.
To describe the association between place of residence in Alberta, Canada, and cardiovascular event risk among adults newly treated with metformin for type 2 diabetes.
Retrospective cohort study.
Administrative data from Alberta, Canada between 2008 and 2023.
Adult new metformin users, categorised by residence (rural, urban, metropolitan) from postal codes 1 year before metformin.
Cause-specific hazard models were constructed for the primary composite outcome (cardiovascular mortality, hospitalisation for an acute coronary syndrome or stroke) and each of the secondary outcomes (components of the primary outcome and all-cause mortality). Models were adjusted for baseline demographics, healthcare utilisation and diabetes complications.
A total of 236 005 adult new metformin users were identified and distributed across the rural-urban continuum (66% metropolitan, 10% urban, 24% rural). Mean age was 55 years, 55% were men, and mean follow-up time was 5.7 years. There were 19 059 primary composite outcome events, and rural residents were more likely to experience the outcome, adjusted HR (aHR): 1.09 (95% CI 1.06 to 1.13), compared with metropolitan. A significant interaction between residence and cardiovascular event history was identified. When stratified, risk of the primary outcome among those without cardiovascular history and living in a rural area was aHR: 1.16 (95% CI 1.11 to 1.20). Among rural residents with cardiovascular history, the risk was aHR: 0.84 (95% CI 0.78 to 0.91).
Quantifying the association between residence and risk of cardiovascular events may focus the allocation of healthcare resources. Development of targeted intervention programmes should focus on primary prevention in rural areas and secondary prevention in metropolitan areas.
Despite increasing proportions of underrepresented minority (URM) medical school graduates, their progression into surgical training and leadership remains disproportionately low. Barriers such as financial constraints, limited mentorship and implicit bias contribute to this disparity, creating a disconnect between the diversity of patient populations and those providing care. While interventions such as mentorship programmes and pipeline initiatives have been implemented, their overall effectiveness has not been systematically evaluated. The primary aim of this scoping review is to map the current landscape of interventions, programmes and policies designed to enhance access to surgical careers for URM learners.
Searches will be conducted on EMBASE, Web of Science and OVID MEDLINE. Three independent reviewers will screen references, extract data and perform analyses with disagreements adjudicated by a fourth reviewer. This review will include studies conducted across all levels of training: secondary (high school or secondary school), postsecondary (undergraduate, medical school) and postgraduate (residency, fellowship), with no geographical restrictions. The definition of URM will be accepted as reported within each individual study, allowing for variability in racial, ethnic, gender, socioeconomic or other criteria. The review will include any structured interventions, programmes or policies aimed at increasing URM representation in surgical education. Data on the nature, duration and target population of each intervention will be extracted. The primary outcome will be the reported impact of interventions on URM representation or participation in surgical education. Secondary outcomes will include characteristics of the study participants, definitions of URM status and any qualitative or quantitative evaluations of intervention effectiveness.
Research ethics approval is not required under University of Toronto policy. Study results will be reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. Results will be disseminated to relevant stakeholders at conference presentation(s) and submitted for publication in a peer-reviewed journal.
The number of people living with multiple long-term conditions (MLTCs or ‘multimorbidity’) is growing. Evidence indicates that exercise-based rehabilitation can improve health-related quality of life and reduce hospital admissions for a number of single long-term conditions. However, it is increasingly recognised that such condition-focused rehabilitation programmes do not meet the needs of people living with MLTCs. The aims for this study were to (1) evaluate the acceptability and feasibility of the newly developed Personalised Exercise Rehabilitation FOR people with Multiple long-term conditions (PERFORM) intervention; (2) assess the feasibility of study methods to inform progression to a definitive randomised controlled trial (RCT) and (3) refine our intervention programme theory.
Semi-structured qualitative interviews were conducted with patients receiving and healthcare practitioners delivering the PERFORM intervention, to seek their experiences of the intervention and taking part in the study. Interviews were analysed thematically, informed by Normalisation Process Theory and the programme theory.
Three UK sites (two acute hospital settings, one community-based healthcare setting).
18 of the 60 PERFORM participants and 6 healthcare professionals were interviewed.
The intervention consisted of 8 weeks of supervised group-based exercise rehabilitation and structured self-care symptom-based support.
All participants and staff interviewed found PERFORM useful for physical and mental well-being and noted positive impacts of participation, although some specific modifications to the intervention delivery and training and study methods were identified. Scheduling, staffing and space limitations were barriers that must be considered for future evaluation and implementation. Key intervention mechanisms identified were social support, patient education, building routines and habits, as well as support from healthcare professionals.
We found the PERFORM intervention to be acceptable and feasible, with the potential to improve the health and well-being of people with MLTCs. The findings of the process evaluation inform the future delivery of the PERFORM intervention and the design of our planned full RCT. A definitive trial is needed to assess the clinical and cost-effectiveness.
Existing exercise-based rehabilitation services, such as cardiac and pulmonary rehabilitation, are traditionally commissioned around single long-term conditions (LTCs) and therefore may not meet the complex needs of adults with multiple long-term conditions (MLTCs) or multimorbidity. The aim of this study was to assess the feasibility and acceptability of the newly developed personalised exercise-rehabilitation programme for people with multiple long-term conditions (PERFORM) and the trial methods.
A parallel two-group mixed-methods feasibility randomised controlled trial (RCT) with embedded process and economic evaluation.
Three UK sites (two acute hospital settings, one community-based healthcare setting).
60 adults with MLTCs (defined as the presence of ≥2 LTCs) with at least one known to benefit from exercise therapy were randomised 2:1 to PERFORM intervention plus usual care (PERFORM group) or usual care alone (control group).
The intervention consisted of 8 weeks of supervised group-based exercise rehabilitation and structured self-care symptom-based support.
Primary feasibility outcomes included: trial recruitment (percentage of a target of 60 participants recruited within 4.5 months), retention (percentage of participants with complete EuroQol data at 3 months) and intervention adherence (percentage of intervention group attending ≥60% sessions). Other feasibility measures included completion of outcome measures at baseline (pre-randomisation), 3 months post-randomisation (including patient-reported outcomes, exercise capacity and collection of health and social care resource use) and intervention fidelity.
Target recruitment (40 PERFORM group, 20 control group) was met within the timeframe. Participants were 57% women with a mean (SD) age of 62 (13) years, body mass index of 30.8 (8.0) kg/m2 and a median of 4 LTCs (most common: diabetes (41.7%), hypertension (38.3%), asthma (36.7%) and a painful condition (35.0%)). We achieved EuroQol outcome retention of 76.7% (95% CI: 65.9% to 87.1%; 46/60 participants) and intervention adherence of 72.5% (95% CI: 56.3% to 84.4%; 29/40 participants). Data completion for attendees was over 90% for 11/18 outcome measures.
Our findings support the feasibility and rationale for delivering the PERFORM comprehensive self-management and exercise-based rehabilitation intervention for people living with MLTCs and progression to a full multicentre RCT to formally assess clinical effectiveness and cost-effectiveness.
With growing access to the internet, online mindfulness programmes have become more commonly used to manage physical and mental health conditions. This scoping review aims to determine the nature and extent of the literature, and key characteristics, of online mindfulness-based interventions (MBIs) for adults with physical or mental health conditions.
A scoping review guided by the Joanna Briggs Institute framework.
MEDLINE, CINAHL, Embase, PsycINFO, Allied and Complementary Medicine and the Cochrane Central Register of Controlled Trials.
Studies focusing on online MBIs, online mindfulness-based stress reduction and online mindfulness-based cognitive therapy (MBCT) in adults with a physical or mental health condition were included.
Study and participant characteristics, key intervention characteristics, outcome measures and results were abstracted.
84 studies were included. Online MBIs have been studied in many different physical and mental health conditions; however, 63 of the included studies were for physical health conditions. MBCT was the most common intervention type assessed, with 33 of the included studies assessing it. Regarding intervention characteristics, intervention duration was similar across intervention type at 8 weeks, with sessions led by therapists, clinicians or mindfulness instructors. Web-based and videoconferencing were the most common delivery formats. Intervention content generally remained similar to standardised MBIs, with the addition of psychoeducation and disease management. Many studies did not report on tailoring the intervention to the participant population. There was a lack of consistency in reporting intervention characteristics.
This review highlights some evidence for online mindfulness programmes for both physical and mental health conditions. However, intervention componentry remains somewhat obscure, and reporting on tailoring appears relatively sparse. Greater consistency in reporting intervention componentry will improve knowledge and study in this area and enhance the translation of these interventions to clinical settings.