In 2023, 21% of deaths occurred in residential aged care facilities (RACFs), a setting expected to play an increasing role in palliative and end-of-life care (PEoLC). General practitioners (GPs) oversee and deliver PEoLC in residential and nursing homes, yet little is known about their practice. We conducted a systematic review of the published evidence concerning how GPs provide this care: what they do and the quality, challenges and facilitators of that care.

Systematic review and narrative synthesis using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Medline, Embase, CINAHL, PsycINFO, Web of Science, Scopus and NHS Evidence and grey literature via Google Scholar were searched through 9 October 2024.

We included studies presenting new empirical data from qualitative, quantitative or mixed methods, were published in the English language and conducted in the UK, the European Union, Australia, New Zealand and Canada. We excluded studies with no new empirical data, discussion papers, conference abstracts, opinion pieces, study participants under 18 years old and in care settings other than RACF.

One independent reviewer used standardised methods to search and screen study titles for inclusion. This reviewer assessed all abstracts of the included papers, and a second independent reviewer screened 60% of the abstracts to validate inclusion. Risk of bias was assessed using Gough’s Weight of Evidence assessment. Thematic analysis was used to describe the contents of the included papers; a narrative synthesis approach was taken to report the findings at a more conceptual level.

The search identified 5936 titles: 35 papers were eligible and included in the synthesis. This is a nascent evidence base, lacking robust research designs and characterised by small sample sizes; the results describe the factors observed to be important in the delivery of care. Care provision is extremely variable; no models of optimal care have been put forward or tested. Challenges to care provision occur at every level of the care system. At macro level, service-level agreements and policies vary: at meso level, team-working, communication technology solutions and equipment availability vary: at micro level, GPs’ interests in providing PEoLC vary as does their training. No study addresses residents’ and relatives’ experiences and expectations of GPs' involvement in PEoLC in RACFs.

The limited evidence base highlights that GP care at end of life for RACF residents varies greatly, with enablers and challenges at all levels in the existing care systems. Little research has examined GP PEoLC for RACF residents in its own right; insight is derived from studies that report on this issue as an adjunct to the main focus. With national policies focused on moving more PEoLC into community settings, these knowledge deficits require urgent attention.

International pilot projects focusing on next-generation sequencing in newborn screening (NBS), that is, genomic NBS (gNBS), have been established thanks to continuous therapeutic progress and the massive development of new genetic technologies with rapidly decreasing costs. Given the highly encouraging results of the French SeDeN project regarding anticipated acceptability among professionals and parents, it is now appropriate to launch a similar pilot project in France, in collaboration with other international initiatives under the International Consortium on Newborn Sequencing framework.

PERIGENOMED is a large-scale project designed to provide the first concrete evidence on the relevance of gNBS in France. It includes two clinical trials. We present here the design chosen for the first clinical trial (PERIGENOMED-CLINICS 1). PERIGENOMED-CLINICS 1 aims to assess the feasibility, real-world acceptability, psychosocial impact and organisational pathways of panel-based genomic newborn screening in France, involving 2500 participants. Solo-GS targeting two lists of gene–disease dyads responsible for treatable (list 1; 400 genes, 171 diseases/group of diseases) or actionable (list 2 optional; 407 genes, 218 diseases/group of diseases) rare and severe early-onset diseases will be proposed in five health institutions. Ancillary social and impact studies will also be included.

All study procedures have been reviewed and approved by relevant French ethics committees and regulatory authorities (CPP Est II-2024-A02224-43, 1 January 2025). Results of the project will be disseminated through peer-reviewed publications, national and international conferences, and public engagement initiatives, in coordination with stakeholders.

NCT06875089.

While group, task-oriented, community-based exercise programs (CBEPs) delivered in-person can increase exercise and social participation in people with mobility limitations, challenges with transportation, cost and human resources, threaten sustainability. A virtual delivery model may help overcome challenges with accessing and delivering in-person CBEPs. The study objective is to estimate the short-term effect of an 8-week, virtual, group, task-oriented CBEP called TIME™ (Together in Movement and Exercise) at Home compared with a waitlist control on improving everyday function in community-dwelling adults with mobility limitations.

A randomised controlled trial incorporating a type 1 effectiveness-implementation hybrid design is being conducted in four Canadian metropolitan centres. We aim to stratify 200 adults with self-reported mobility limitations by site, participation alone or with a partner, and functional mobility level, and randomise them using REDCap software to either TIME™ at Home or a waitlist control group. During TIME™ at Home classes (2 classes/week, 1.5 hours/class), two trained facilitators stream a 1-hour exercise video and facilitate social interaction prevideo and postvideo using Zoom. A registered healthcare professional at each site completes three e-visits to monitor and support implementation. Masked evaluators with physical therapy training evaluate participants and their caregivers at 0, 2 and 5 months using Zoom. The primary outcome is the change in everyday function from 0 to 2 months, measured using the physical scale of the Subjective Index of Physical and Social Outcome. The study is powered to detect an effect size of 0.4, given α=0.05, power=80% and a 15% attrition rate. Secondary outcomes are mobility, well-being, reliance on walking aids, caregiver assistance, caregiver mood, caregiver confidence in care-recipient balance and cost-effectiveness. A multimethod process evaluation is proposed to increase understanding of implementation fidelity, mechanisms of effect and contextual factors influencing the complex intervention. Qualitative data collection immediately postintervention involves interviewing approximately 16 participants and 4 caregivers from the experimental group, and 8 participants and 4 caregivers from the waitlist control group, and all healthcare professionals, and conducting focus groups with all facilitators to explore experiences during the intervention period. A directed content analysis will be undertaken to help explain the quantitative results.

TIME™ at Home has received ethics approval at all sites. Participants provide verbal informed consent. A data safety monitoring board is monitoring adverse events. We will disseminate findings through lay summaries, conference presentations, reports and journal articles.

NCT06245135.