Anthony Byrne

Purpose: This review aimed to identify and review any brain tumour-specific holistic needs assessment (HNA) and the clinical implementation of any HNAs in an adult cancer population. Methods: A systematic review and narrative synthesis. Five electronic databases were searched from 2008 to 2023 and updated in January 2025. Reference lists of systematic reviews were screened for relevant studies. Two independent reviewers performed study selection, critical appraisal, and data extraction. Results: Four HNA tools implemented in clinical practice, across 9 studies, were included. One study was adapted for brain tumour patients. Evidence of widespread implementation in clinical practice was limited and varied evidence, relating to the timing, location and mode of delivering. Patients were more likely to report on physical rather than psychosocial needs, with limited evidence of patient and staff satisfaction with the use of HNA. Conclusion: There is limited and varied evidence of HNAs being successfully implemented in brain tumour and the wider cancer healthcare settings. Tailored interventions for the needs of people with brain tumour have the potential to address the complexities this population faces. However, clear evidence-based guidance to develop relevant HNAs for successful implementation in clinical settings is needed.

Improving and monitoring quality of palliative and end-of-life care is well documented within current and historic literature. However, there is a paucity of evidence around national data-informed approaches to ensure healthcare services are delivering high-quality, equitable care that meets the needs of the population within the last year of life. Wales has a legal ‘Duty of Quality’ obligation and has taken on the challenge to measure and monitor quality within the healthcare system at a population level within the last year of life, creating a dashboard using nationally held routine data. This manuscript aims to document the progress made in Wales to describe and monitor quality in care for people within the last year of life at a population level against the six domains of quality and discusses requirements and challenges of the approach and its future direction.

Background: Provision of remote (online/telephone) bereavement support accelerated during the COVID-19 pandemic. However, the extent and impact of this change and lessons learnt are unknown. Aim: To determine the extent to which UK voluntary and community sector bereavement services moved to remote support provision during the pandemic, explore providers’ perspectives on this shift, and consider implications. Design: Mixed methods explanatory sequential study, conducted spring 2021: (1) Online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers. Setting/participants: 147 services participated in the survey; 44.5% hospice/palliative care services; 15.1% national charities/organisations; 11.6% local charities/ organisations. 24 interviews were conducted across 14 services. Results: Pre-pandemic, remote support was offered by <10% of bereavement organisations. By spring 2021, there had been increases in online: peer group meetings (3.4% pre-pandemic to 33% during, OR 13.8), facilitated group meetings (4.1%–56%, OR 30.48), 1:1 support (8.8%–83%, OR 50.3), and specialist intervention (3.4%–36%, OR 16.01). Telephone bereavement support was also more widely available. The appropriateness and acceptability of these changes differed by client group. Adaptations presented organisational/logistical challenges, and difficulties for support providers working from home. Smaller organisations with fewer resources found these harder to accommodate. Hybrid working and new technologies were reported to increase service efficiency and cost-effectiveness. Conclusions: Remote delivery of bereavement support increased support capacity and can potentially reduce inequities in access. However, it needs to be carefully tailored, and is not appropriate for everyone. Staff and volunteers providing remote services require training and support.

Systematic reviews have identified variation and inequity in care provision for people with pre-existing severe mental illnesses who have palliative or end-of-life care needs. To analyse service use and variation for people with severe mental illness in the last year of life in Wales. This is an observational retrospective cohort study between 2018 - 2023 using anonymised linked routinely collected health datasets within a data dashboard. We identified n = 4722 (2.3%) deaths with ICD-10 codes for severe mental illness for the period 2018-2023. As a group, people with severe mental illness die younger, are in receipt of specialist palliative care at lower rates, die more often in institutional settings rather than their own homes and comorbidity indicates more unscheduled care use in the last year of life. Unscheduled care use in the last year of life is associated with comorbidity, indicating opportunities for upstream intervention to improve treatment, experience, and quality of life for people with severe mental illness. Further investigation, such as mixed methods approaches to examine experiences of those with severe mental illness in the last year of life, and the human and systems factors influencing the nature and effectiveness of unscheduled delivery, is needed.

Background: The challenges and needs of people with brain tumors are complex and unique, particularly—but not limited to—the neurocognitive impacts they experience. These effects are subsequently impactful on their primary caregivers. Evidence suggests people with glioma and their caregivers experience a range of unmet needs in the clinical care setting. Methods: Semi-structured interviews with people across the spectrum of glioma, and their caregivers in the United Kingdom, as part of a study exploring core outcomes for use across glioma trials. Interviews were analyzed using thematic analysis. Results: Nineteen people with glioma and seven caregivers were interviewed. Three major themes were identified: (1) Well-being, support and coping, (2) Communication and care, and (3) Impact on caregivers. People with glioma and their caregivers experience uncertainty, and progressive impacts long after diagnosis. People with glioma across the spectrum of the disease have many challenges in common including long-term adjustments, impacts of glioma and its treatment, and communication/information gaps including prognostic uncertainty. These impacts also affect caregivers. While most patients and caregivers engaged in self-directed approaches to mitigate the impacts of glioma, gaps in follow-up support for lasting effects were a major source of frustration, impacting on ability to cope and manage the effects of glioma. Conclusions: These interviews highlight the unmet needs of people with glioma and their caregivers. A consistent, systematic, and focused approach to assessing the needs of glioma patients and their caregivers in the clinical setting and support for long-term adjustment is required.

Objectives: To analyse service use and variation for people with severe mental illness in the last year of life in Wales. Methods: This is an observational retrospective cohort study between 2018 – 2023 using anonymised linked routinely collected health datasets within a data dashboard. Results: We identified n=4722 (2.3%) deaths with ICD-10 codes for severe mental illness for the period 2018-2023. As a group people with severe mental illness die younger, are in receipt of specialist palliative care at lower rates, die more often in institutional settings rather than their own homes and comorbidity indicates more unscheduled care use in the last year of life. Conclusions: Unscheduled care use in the last year of life is associated with comorbidity indicating opportunities for upstream intervention to improve treatment, experience and quality of life for people with severe mental illness. Further investigation such as mixed methodological approaches to examine experiences of those with severe mental illness in the last year of life, and the human and systems factors influencing the nature and effectiveness of unscheduled delivery for this patient cohort alongside developments in data linkage that include general practice, social care, nursing and specialist palliative care inputs are needed. What is already known on this topic: There is little current data on people with severe mental illness in the last year of life, including service encounters such as unscheduled care. Routinely collected data for health service dashboards are a ready source that can provide new information on service use for this group. What this study adds: We now know how many people are dying in Wales with severe mental illness and their use of services in the last year of life. Comorbidity is associated with unscheduled service use and lower rates of specialist palliative care suggest a possible upstream intervention is possible. How this study might affect research, practice or policy: Detailed data linkage studies that make use of wider datasets including general practice, social care and nursing services are needed. Qualitative first-hand accounts from patients, their families and professionals could add new evidence. Specialist palliative care intervention earlier for patients with severe comorbidity may reduce use of unscheduled care. Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors. Competing interest: VV is employed by the Digital Health and Care Wales. The Centre for Trials Research at Cardiff University receives infrastructure funding from Health & Care Research Wales. The authors declare no other competing interests. Data availability statement: The dashboard has been developed by Digital Health and Care Wales in collaboration with the Welsh Value in Health Centre and NHS Wales Palliative Care clinicians. Use of the data and access to the dashboard is available to all NHS Wales staff and a number of Welsh Government professionals. All queries and requests for further information can be directed to the Information Services team at dhcw.info@wales.nhs.uk . Contributors: All authors conceived and designed the study. VV prepared the dashboard data for analysis. MC performed the analysis for this paper. All authors contributed to the interpretation of the results. MC wrote the initial draft of the manuscript and all authors critically reviewed and approved the final version.

Background: The COVID-19 pandemic has been a devastating and enduring mass-bereavement event, with uniquely difficult sets of circumstances experienced by people bereaved at this time. However, little is known about the long-term consequences of these experiences, including the prevalence of Prolonged Grief Disorder (PGD) and other conditions in pandemic-bereaved populations. Methods: A longitudinal survey of people bereaved in the UK between 16 March 2020 and 2 January 2021, with data collected at baseline (n=711), c. 8 (n=383), 13 (n=295) and 25 (n=185) months post- bereavement. Using measures of Prolonged Grief Disorder (PGD) (Traumatic Grief Inventory), grief vulnerability (Adult Attitude to Grief Scale), and social support (Inventory of Social Support), this analysis examines how participant characteristics, characteristics of the deceased and pandemic- related circumstances (e.g. restricted visiting, social isolation, social support) are associated with grief outcomes, with a focus on levels of PGD. Results: At baseline, 628 (88.6%) of participants were female, with a mean age of 49.5 (SD 12.9). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Sample demographics were relatively stable across time points 34.6% of participants met the cut-off for indicated PGD at c. 13 months bereaved and 28.6% at final follow-up. Social isolation and loneliness in early bereavement and lack of social support over time strongly contributed to higher levels of PGD, whilst feeling well supported by healthcare professionals following the death was associated with reduced levels of PGD. Characteristics of the deceased most strongly associated with lower PGD scores, were a more distant relationship (e.g. death of a grandparent), an expected death and death occurring in a care- home. Participant characteristics associated with higher levels of PGD included low level of formal education and existence of medical conditions. Conclusion: Results suggest higher than expected levels of PGD compared with pre-pandemic times, with important implications for bereavement policy, provision and practice now (e.g. strengthening of social and specialist support) and in preparedness for future pandemics and mass-bereavement events (e.g. guidance on infection control measures and rapid support responses).

Purpose: There is some evidence of the benefits of physical activity (PA) in patients with lung cancer; however, there is a lack of understanding of acceptable PA for patients with established cachexia and how to facilitate sustainable behaviour change to promote PA. Therefore, this study explored the views of healthcare professionals (HP), patients with lung cancer and cachexia, and their carers on preferences for, barriers and facilitators of homebased PA. Methods: This qualitative study involved ten telephone interviews with HPs and face-to-face interviews with seven patients with lung cancer and cachexia and their carers. Interviews were transcribed and analysed thematically. The Capability, Opportunity, Motivation and Behaviour (COM-B) model was used as a framework for the thematic cross-group analysis. Results: The types of homebased PA suggested by patients with lung cancer and cachexia (n = 7), their carers (n = 7) and HPs (n = 10) were functional, flexible, individualised and initially of short duration and low intensity. PA was influenced by themes within physical and psychological Capability, physical and social Opportunities as well as automatic and reflective Motivation. Conclusion: Based on a behaviour change theory, principles to promote homebased PA were developed. These principles need to be integrated into tools to promote PA in people with lung cancer and weight loss. Implications for Cancer Survivors: The application of the proposed principles by clinicians will promote physical activity, enhancing the function and wellbeing of patients with lung cancer and reducing burden on carers.