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Palliative Medicine

SAGE Publications

Preprints posted in the last 90 days, ranked by how well they match Palliative Medicine's content profile, based on 10 papers previously published here. The average preprint has a 0.02% match score for this journal, so anything above that is already an above-average fit.

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Using electronic health record data accessed via OpenSAFELY to develop indicators of end-of-life care quality

Bagri, S.; Julian, S.; Davies, M.; Scobie, S.; Schaffer, A.; Collaborative, T. O.

2026-02-04 palliative medicine 10.64898/2026.02.03.26345473 medRxiv
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An understated disruption to health services brought about by the Covid-19 pandemic was the increase in deaths occurring outside a hospital. Since quality of end-of-life care is typically monitored through place of death and hospital activity, a new approach focused on care in community settings is needed. In this study, we aimed to test whether patient-centric measures of quality at the end of life can be derived from primary care electronic records. With the approval of NHS England, analysis was undertaken in OpenSAFELY-TPP using electronic health care records of over 970,000 patients who died between March 2019 and August 2023, covering periods before, during and after the pandemic. We developed two new measures of end-of-life care quality--specialist palliative care team contacts and advance care planning, and tracked the proportion of patients with these records, categorized by place and cause of death, along with an existing measure indicating palliative care needs. The proportion of people with a GP record of specialist palliative care was 4-5% on average, higher for those who died of cancer or died in a hospice. Advance care planning records increased from 19% to 27% (barring a decrease following the onset of the Covid-19 pandemic) driven in large part by increases for patients who died in care homes. Advance care planning and recording of palliative care needs were plausible measures to track changes in care, unlike the specialist palliative care measure where recorded use was sparse. Improved coding in primary care records would improve reliability of measures. Key messagesO_LIQuality of end-of-life care is traditionally measured by how patients use health services (for example emergency department attendances) C_LIO_LIWe used routine GP health records to track aspects of end-of-life care quality which matter to patients and discuss the impact of the covid-19 pandemic on these quality measures C_LIO_LIA new measure of advance care planning and the existing palliative care needs measure could be used to track end of life care delivered in the community C_LIO_LIThe measure of specialist palliative care was sparsely coded and unlikely to be useful unless coding and data linkage between GP and other systems improves C_LI

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Evaluation of a Cook Islands Maori model of palliative care: a protocol

Henry, A.; Tautolo, E.-S.; Herman, J.; Dewar, J.; Maua-Hodges, T.; Mulipola, I.

2026-02-14 palliative medicine 10.64898/2026.02.11.26346011 medRxiv
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AimThis research aims to evaluate the effectiveness, cultural appropriateness, and feasibility of the Cook Islands palliative care model te vaerua k[o]p[u] tangata ora within palliative care practice. BackgroundAccess to palliative and end of life care is a recognised human right, yet significant disparities persist for Pacific peoples in Aotearoa, New Zealand. While the understanding of different cultural perspectives has grown, in Aotearoa, there remain gaps in the delivery of culturally appropriate palliative care. MethodologyThis study will use a Cook Islands T[i]vaevae research methodology to guide semi-structured interviews with 25-35 Cook Islands community members and 10 palliative care clinicians. This approach will support a rich, relational, and culturally grounded exploration of how a Cook Islands M[a]ori palliative care model can be integrated into clinical practice. DiscussionRecommendations to improve culturally responsive palliative care will be formulated in collaboration with community members and clinicians. The study will contribute to the limited body of knowledge on Pacific cultural understandings of palliative care and provide practical insights into applying an indigenous Pacific model within the palliative care system.

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Benefit take-up in the last year of life: a population-based study using linked data for England and Wales

Davies, J. M.; Fairs, A.; Ayoubkhani, D.; Marshall, S.; Diggle, M.; Bradshaw, A.; French, M.; Stone, J.; Hussain, J.; Fimister, G.; Harding, R.; Sleeman, K.; Nafilyan, V.

2026-04-11 palliative medicine 10.64898/2026.04.10.26350614 medRxiv
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Context: In the UK, and in other countries, people living with a terminal illness are eligible for financial support to help with the costs of serious illness and to support their dignity and independence. This study investigates the take-up of benefits in the last year of life and identifies sociodemographic, clinical, and geographical factors associated with underclaiming. Methods: Retrospective cohort study using linked mortality, Census and benefits data for all people who died aged 16+ from chronic illnesses in England and Wales between 1 May 2018 and 30 April 2021. Outcome was receipt of non-means tested disability benefits in the last 12 months of life. We describe geographical variation in take up, and association with sociodemographic, clinical and geographical exposures using Poisson models. Findings: Our population included 1,049,493 eligible decedents, with an overall take-up rate of 65.9%. After adjusting for sociodemographic factors, variation in take-up by cause of death was wide: liver disease 44% (95% CI 43, 45%), heart failure 52% (51, 52%), cancer 62% (61, 62%), dementia 75% (74, 75%), and neurodegenerative diseases 90% (88, 91%). Across Local Authorities, the age-and-sex-standardised take-up varied from 53% to 78%; rates were generally higher in more deprived areas, but not uniformly. Conclusions: In England and Wales, 1 in 3 people who die from expected causes (120,000 each year) do not receive the benefits for which they are eligible. Our analysis uses novel data linkages and highlights clinical and sociodemographic groups and geographical areas that could be targeted with proactive take-up initiatives.

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Palliative Care in Humanitarian Settings: An International Survey on Perceived Importance and Readiness among Health Emergency Response Unit Delegates

Kaade, H.; May, S.; Allsop, M.; kamp, M.; Heinze, M.; Muehlensiepen, F.

2026-03-13 palliative medicine 10.64898/2026.03.12.26348178 medRxiv
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ObjectivePalliative care is recognized as an essential component of humanitarian health response, yet its delivery in field operations remains limited. This study assessed perceived importance, readiness to deliver, training needs, and operational barriers among Red Cross and Red Crescent Health Emergency Response Unit (ERU) delegates. MethodsA cross-sectional, web-based survey (LimeSurvey) was conducted among health professionals with ERU deployment experience between 1 October and 31 December 2024. The questionnaire captured demographics, background, preparedness, barriers, and training preferences. Descriptive statistics summarized categorical variables, and free-text responses underwent content analysis by two reviewers. Quantitative and qualitative strands were analyzed separately and integrated in interpretation. FindingsOf 173 responses, 114 met inclusion criteria (including 11 partial [≥]50% complete). Half (50.9%) had over ten years of humanitarian experience. Most (71%) considered palliative care extremely important, yet only 49.1% reported providing it, usually limited to pain relief; 25.4% reported none. Barriers included insufficient time or resources (56.1%), lack of training (49.1%), absent policies (48.2%), cultural barriers (47.4%), limited knowledge (36.8%), and restricted opioid access (28.1%). Among prescribers, 85.1% felt comfortable prescribing opioids, but stockouts (54.2%) and regulations (44.9%) constrained use. Most delegates (75.4%) had delivered bad news without structured communication training. 83% reported no palliative care training, though 91.4% endorsed dedicated, blended learning combining online and practical components. ConclusionERU delegates view palliative care as essential yet under-implemented. Integrating core competencies, standard protocols, and medicine access pathways--supported by competency-based training--could strengthen humanitarian readiness and align with WHO Emergency Medical Team standards.

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Unmet palliative care needs in England and Wales: population-based estimates and future projections (2025-2050)

Johansson, T.; Sleeman, K. E.; Finucane, A.; Davies, J. M.; Fraser, L. K.; Higginson, I. J.; Diggle, M. F. J.; Murtagh, F. E. M.; Bone, A. E.

2026-02-17 public and global health 10.64898/2026.02.16.26345914 medRxiv
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IntroductionWith global populations ageing, demand for palliative care is increasing. Population-level assessments of unmet palliative care needs are essential for strategic planning, yet rigorous methods to estimate unmet needs are lacking. This study aimed to develop methods and estimate current and future population-level prevalence of unmet palliative care needs among adults in England and Wales. MethodsSecondary analyses of data from a nationally representative post-bereavement survey in England and Wales in 2022 (n=1,194). Unmet needs in the survey sample were estimated using two methods: (1) reported unresolved symptoms and concerns using Integrated Palliative care Outcome Scale scores, cutoff [≥]34/68; and (2) reported insufficient care provision from general practitioners. These methods were combined to further provide a conservative estimate (1 and 2) and a broad estimate (1 or 2). We examined associations with unmet needs using modified Poisson regression. Age-, gender- and nation-specific sample estimates were applied to mortality data for 2022 and projections from the Office for National Statistics to calculate population-level estimates and prevalence from 2025 to 2050. ResultsIn 2022, 247,993 (46%) adult decedents in England and 17,209 (49%) in Wales had unmet palliative care needs using method 1; 244,612 (46%) and 15,280 (43%), respectively, using method 2. According to conversative and broad estimates, 32% and 61% could have unmet needs in England, and 29% and 62% in Wales. By 2050, prevalence of unmet needs are projected to rise by 21-26% in England and 14-19% in Wales depending on estimate used, with the largest absolute increase among those aged [≥]85 years. ConclusionsUnmet palliative care needs are high in England and Wales and projected to increase by 2050, regardless of method. We contrast methods based on unresolved symptoms and concerns or insufficient care provision, or both, to inform the planning and evaluating of equitable care. Key MessagesO_ST_ABSWhat is already known on this topicC_ST_ABSO_LIAlthough understanding population-level unmet palliative care needs is critical for effective service planning, robust and standardised methods to estimate these needs remain limited. C_LI What this study addsO_LIWe use two methods to provide four estimates of population-level prevalence of unmet palliative care needs and discuss their strengths and limitations. C_LIO_LIRegardless of estimate, prevalence of unmet palliative care needs is high, ranging 32-61% in England and in 29-62% in Wales; the number of people with unmet needs is anticipated to increase by 21-26% in England and 14-19% in Wales by 2050. C_LI How this study might affect research, practice or policyO_LIThis advancement in methods to estimate unmet palliative care needs can inform the development and evaluation of population-level strategies to improve end-of-life care. C_LIO_LIOur population-level estimates do not account for multiple long-term conditions which are rising and will likely increase the complexity of needs. C_LIO_LIThere needs to be more investment in primary and community-based services to ensure high-quality symptom management and support for people and their families towards the end of life. C_LI

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Dementia and End-of-Life Shared Decision-Making Among Older US Adults

Xie, Z.; Hong, Y.-R.; Armstrong, M. J.; Wang, X.; Jacobs, M.

2026-03-30 palliative medicine 10.64898/2026.03.27.26349555 medRxiv
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Introduction: End of life decision making poses unique challenges for individuals with dementia and their family caregivers as cognitive decline shifts decision making responsibility to surrogates. Methods: Using 2010 to 2022 Health and Retirement Study (HRS) exit interview data, we compared advance directive completion, decision making needs near death, involvement of others in decision making, and concordance between expressed preferences and care received among decedents with and without dementia. Analyses incorporated HRS exit interview sampling weights, primary sampling units, and strata to account for the complex multistage probability design of HRS and produce nationally representative estimates of U.S. older adult decedents (50 years or older). Weighted descriptive statistics and design adjusted Wald tests were used to compare groups. Results: Among 5,389 decedents, 1,010 (weighted 17.7%) had dementia prior to death. Decedents with dementia were more likely to have completed advance directives than those without dementia (81.3% vs. 69.1%, p<.001). However, they also had significantly higher decision making needs in the final days of life (54.3% vs. 47.2%, p<.001). Children or grandchildren were more frequently involved in care decisions for decedents with dementia (63.9% vs. 45.6%, p<.001). Despite differences in decision making processes, most decedents in both groups expressed preferences for comfort focused care, and preference care concordance exceeded 90% in both groups. Conclusions: Findings suggested that dementia reshaped the structure and intensity of the shared decision making process by increasing surrogate engagement and decisional demands, underscoring the importance of early advance care planning and structured support for family caregivers to sustain goal concordant care.

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Palliative Care Integrated Into Primary Healthcare Service (Palli Phc) : An Implementation Study In Rohingya Refugee Setting In Coxs Bazar, Bangladesh

Halder, C. E.; Zaman, S. S. U.; Hasan, M. A.; Rahman, M. M.; Sayum, M. A.; Soma, E. R.; Okello, J. C.

2026-02-05 palliative medicine 10.64898/2026.02.03.26345518 medRxiv
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In humanitarian crises, health services focus on acute lifesaving care, and the needs of patients with chronic, progressive, and/or life-limiting illnesses are usually neglected. To address this gap, the International Organization for Migration (IOM) has been implementing an integrated palliative care service model: Palliative Care Integrated into Primary Healthcare (PALLI-PHC). This study aims to assess service outputs and patient-level outcomes of the model in the Rohingya refugee camps. PALLI-PHC consists of a service delivery system supported by a health system support chain. The service is delivered at facility and home levels with an established referral pathway, triage and assessment, clinical evaluation, and care planning. The support chain comprises multidisciplinary engagement, health workforce, advocacy and capacity building, financing, community engagement, essential medical logistics, and information management. Between January 2020 and December 2024, the programme delivered 40,776 consultations for a cohort of 11,599 patients. The top conditions managed were stroke, cancers, diabetic complications, hypertensive complications, and COPD. Prevalent symptoms included pain, fatigue, anxiety and worry, depressed mood, shortness of breath, and insomnia. Care was provided through facility-based and home-based services, including pain and symptom management, psychosocial and spiritual support, rehabilitation, caregiver support, and end-of-life care. Across follow-up visits, mean ESAS-r symptom scores declined significantly and the proportion receiving pain medication increased, although average disability scores also rose modestly over time. This study shows how palliative care can be integrated into primary healthcare in a protracted humanitarian setting and can achieve measurable patient-level improvements, including reduced symptom burden and increased pain medication utilization.

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Informal support networks and their role in community safety and mental well-being among racially and ethnically minoritised groups in London: a qualitative study

Benjamin, L.; Williams, D.; Asif, Z.; Campbell, S.; Mousicos, D.; Rhead, R.; Stanley, N.; Kienzler, H.; Hatch, S.

2026-02-23 public and global health 10.64898/2026.02.17.26346389 medRxiv
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BackgroundCommunity safety is a key determinant of mental well-being, yet racially and ethnically minoritised communities in the UK often face higher exposure to violence alongside barriers to formal protection and support. In these contexts, informal support networks may play a critical role in shaping how safety is experienced and how distress is managed. Although such networks are widely recognised as protective for mental well-being, there is limited qualitative research examining how they operate in relation to community safety in settings shaped by structural inequality. This study explores how informal support networks influence experiences of community safety and mental well-being among racially and ethnically minoritised groups in South East London. MethodsThis qualitative study draws on semi-structured interviews (n = 31) with racially and ethnically minoritised participants aged 16+ living or working in Lambeth and Southwark [South East London]. Using a co-produced qualitative design, community consultations informed the development of interview topics. Interviews explored informal support networks, experiences of community safety and their intersections with mental well-being. Audio-recorded interviews were transcribed verbatim and analysed using inductive thematic analysis. ResultsFour themes were identified: (1) experiences of community safety and their mental health impacts; (2) gendered experiences of safety and responsibility; (3) formal support and its barriers; and (4) community and peer-led initiatives as a response to institutional distrust. ConclusionInformal support networks are central to everyday safety and emotional well-being, yet they cannot substitute for adequately resourced, culturally informed public provisions. Strengthening public infrastructure must involve meaningful collaboration with trusted community networks and address the intersectional needs of racially and ethnically minoritised groups.

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Integrated Palliative Care in Rural Communities: A Qualitative Study of Service Integration in Southern Minnesota

Mondejar-Pont, M.; Ellen, V.; Abbott-Anderson, K.

2026-03-27 health policy 10.64898/2026.03.25.26349325 medRxiv
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Background: Palliative care services improve quality of life and health outcomes for individuals living with chronic and life-limiting illnesses. Although these services have expanded considerably in urban areas, their availability remains limited in many rural communities. This study aimed to identify key components of integrated palliative care services and examine how these elements are implemented within rural healthcare systems in southern Minnesota. Methods: A qualitative case study using deductive content analysis was conducted. Semi-structured interviews were carried out with healthcare professionals involved in palliative and hospice care serving rural communities in southern Minnesota. Results: Participants identified several essential components of integrated palliative care, including multidisciplinary care teams, continuity of care across healthcare settings, interprofessional collaboration, and early identification of patients who may benefit from palliative care. Existing services in southern Minnesota incorporate several integrated elements, such as coordinated care teams, individualized care plans, nurse-led case management, professional training, and the use of virtual visits for geographically distant patients. However, participants also identified important gaps, including limited availability of palliative care services in rural areas, fragmented continuity of care, challenges in early patient identification, funding and insurance barriers, and the absence of a unified palliative care network. Conclusions: While palliative care services in southern Minnesota demonstrate important strengths, further efforts are required to improve service integration, coordination, and access for rural populations. Strengthening integrated PCSs may help reduce disparities in access to care and improve service delivery for rural patients and their families. These findings may inform the development of integrated palliative care models in rural healthcare systems beyond the study setting.

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Understanding older people experiencing homelessness with complex health and social circumstances Qualitative study

Mabhala, M.

2026-03-19 public and global health 10.64898/2026.03.18.26347969 medRxiv
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ObjectiveThe study aimed to understand the perspectives of professionals from multi-agencies working with individuals experiencing homelessness with complex health and social circumstances (PHECHS), specifically focusing on how they define and contextualise the concept of "complex needs". Methodsixteen qualitative interviews with multi-agencies working with people experiencing homelessness were analysed using Heideggers interpretive phenomenological analysis (IPA), theories of socioeconomic determinants and international and national policy analysis were utilised to analyse data collected by MM on the multi-agency approach to individuals experiencing homelessness with complex health and social needs (PHECHS). FindingsThe analysis of a multi-agency approach aimed at supporting PHECHS revealed that complex needs arise gradually during childhood and can continue into adulthood. A range of factors contribute to both homelessness and these complex needs. Deconstructing the social and economic factors that underpin this continuum is essential to effectively addressing these challenges. This study conceptualises the complex needs of PHECHS into two key themes: deconstructing the PHECHS and attritional approach to PHECHS. ConclusionHomelessness is a grave human rights violation, depriving people of essentials like housing, food, health, education, and social participation. Governments have a moral and legal duty to end homelessness. Real progress demands comprehensive, sustained, and rights-based strategies that tackle root causes--poverty, trauma, and social exclusion. Homelessness also stems from gaps in vital life skills: job seeking, financial management, accessing services, and self-care. These barriers make it even harder to secure stable housing. Lasting reductions in homelessness result from a strong legislative framework, national guidelines, and sustained financial investment. Strengths and limitations of this study1. Employing qualitative methods and analysing data through the lens of socioeconomic determinants of health inequalities enabled the development of a model that clarifies the structural causes of homelessness and highlights key opportunities for preventive policy interventions. 2. Examining the data through the lens of socioeconomic health determinants reveals how systemic and structural factors, such as housing policy and service access, drive complex needs beyond individual circumstances. 3. The study was conducted in an affluent, demographically homogenous city, resulting in the underrepresentation of individuals from ethnic minority backgrounds, women, and young people. 4. Future research should investigate the experiences of people experiencing homelessness using an asset-based perspective, leveraging frameworks that emphasise resourcefulness to promote their meaningful engagement and inclusion in society.

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A mixed-methods realist evaluation of the Sutton Parenting Offer (universal parenting programme): A study protocol

Varela-Mato, V.; Ngina, D.; Orton, E.; Barnes, J.

2026-03-31 public and global health 10.64898/2026.03.30.26348215 medRxiv
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Background Parenting practices shape children's emotional, social, and cognitive developmental wellbeing. Yet, many families face complex challenges that increase the risk of poor outcomes and demand on social care. The Sutton Parenting Offer (SPO) is a universal, peer-led parenting offer that provides early, non-stigmatising support to families with children aged 0-25 years. It combines evidence-based programmes with informal workshops and peer networks delivered through Family Hubs. This present study is an evaluation protocol of the parenting offer. Aim This evaluation aims to explore how, why, and in what contexts SPO supports families in engaging, sustaining positive change, and generating wider system value. Methods A mixed-methods realist evaluation approach will be used to evaluate SPO across four work packages: engagement pathways, early changes and peer-led ecosystems, long-term change, and system value for money. Data sources will include attendance data (anonymised service records), survey data (entry and exit), and qualitative data (dyad interviews, story circles, and stakeholder-value mapping workshops). The COM-B and the Theoretical Domains Framework (TDF) will guide the analysis of behavioural data. Quantitative data will be analysed descriptively and using paired parametric and non-parametric tests, while qualitative data will be analysed thematically following a realist-informed approach to refine context-mechanism-outcome (CMO) configurations. Discussion This protocol presents the first realist informed evaluation of a universal parenting program in a local authority setting. The evaluation will generate evidence on how, when and why a universal, community-based, and peer-led model such as the Sutton Parenting Offer engages families and generates change. The findings will be useful to inform future parenting service design and implementation in local contexts in England.

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Stakeholder Perspectives on Brain Tumor Care Across Rural-Urban Boundaries: A Reflexive Thematic Analysis

Sharma, A.; Andrews, K.; Calvert, E.; Howran, J.; Shore, R.; Purzner, J.; Purzner, T.

2026-03-11 health systems and quality improvement 10.64898/2026.03.10.26348065 medRxiv
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ObjectivesTo explore stakeholder perspectives on care coordination barriers and facilitators in regionalized neuro-oncology delivery, using brain tumors as a model for examining complex care pathways serving mixed rural-urban populations. DesignReflexive thematic analysis of semi-structured interviews from stakeholders across the neuro-oncology care pathway was used to identify themes of care system strengths, systemic barriers to effective service delivery and priorities for system improvement. SettingRegionalized Canadian health system serving one of Ontarios largest catchment areas, characterized by predominantly rural populations and substantial geographic distances to tertiary care. ParticipantsThirty-six stakeholders purposively sampled to represent diverse roles across the care pathway, including family caregivers (n=6), healthcare providers from multiple specialties and care settings (n=28) and Indigenous community advisors (n=2). ResultsTwo main themes with subthemes emerged revealing a tension between localized excellence and systemic fragmentation. Theme 1 (Care System Strengths) included three subthemes: responsive palliative care integration, exceptional provider commitment, and effective intra-institutional communication. Theme 2 (Systemic Barriers to Care Continuity) included four subthemes: absent cross-institutional coordination infrastructure, insufficient pathway standardization, inadequate educational infrastructure for patients and providers and limited regional clinical trial access. Coordination mechanisms functioning effectively within the tertiary center consistently failed at interfaces with referring hospitals and community services, with participants describing patients becoming "lost in transitions." ConclusionsFindings reveal how regionalized cancer systems can achieve localized coordination while failing at system integration. The contrast between internal institutional coherence and external fragmentation suggests that effective care delivery requires deliberately extending coordination mechanisms across organizational boundaries through standardized pathways, shared information systems and defined cross-site accountability structures. Brain tumors, requiring rapid multidisciplinary coordination, expose these interface failures with clarity, offering transferable insights for improving integrated cancer care in regionalized health systems serving geographically dispersed populations. ARTICLE SUMMARYO_ST_ABSStrengths and limitations of this studyC_ST_ABSO_LIPurposive sampling captured diverse stakeholder perspectives across the entire care continuum, from tertiary providers to community services and family caregivers C_LIO_LIReflexive thematic analysis with independent coding by three researchers enhanced interpretive rigor and depth C_LIO_LIBrain tumors function as a model condition for examining care coordination due to their rapid progression and sensitivity to variability in care C_LIO_LISingle health system design limits direct generalizability but enables in-depth examination of coordination mechanisms in a regionalized context C_LIO_LIGeographic and organizational characteristics common to Canadian regionalized systems support transferability of findings C_LIO_LIIndigenous patient perspectives were represented through community advisors; direct patient voices from Indigenous communities would strengthen future work C_LI

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Teleconferencing as an alternative to written Advice and Guidance referrals at the primary-secondary care interface: a qualitative case study

He, S.; Usher-Smith, J.; Martin, G.

2026-02-16 primary care research 10.64898/2026.02.12.26343579 medRxiv
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BackgroundCommunication issues across the primary-secondary care interface are considered one of the most important challenges in improving patient safety in primary care in the UK. Teleconferencing offers a potential means of improving communication during referrals but is largely unevaluated. AimTo explore teleconferencing as an alternative to written Advice and Guidance (A&G) referrals for neurology cases, by assessing its impact on GP-specialist communication and relationships, and exploring implications for patient care. Design and SettingA qualitative case study of a primary care network (PCN) and a secondary care centre in East Anglia. Methods18 clinicians and 10 other stakeholders were interviewed. Observations of teleconferences and a focus group with five PCN staff provided additional data. Data collection and analysis were guided by the Consolidated Framework for Implementation Research and Reflexive Thematic Analysis. ResultsAdvantages of teleconferencing identified by participants included greater clinician satisfaction, mutual educational value, streamlined patient journeys and continuity of care. Teleconferences were also seen to build GP-specialist relationships and reduce unnecessary outpatient referrals. Perceived issues included time constraints, clinical governance and funding sustainability; teleconferences were not seen as appropriate for all referrals. Overall, participants welcomed the teleconference approach but stressed the need to robustly assess its cost-effectiveness and replicability in other settings. ConclusionTeleconferencing is a potentially promising alternative to written A&G referrals and was perceived by participants to help build GP-specialist relationships. However, further studies are needed to assess clinical effectiveness and costs, and to guide future development and implementation. How this fits inO_ST_ABSWhat is known?C_ST_ABSReferral interventions involving direct GP-specialist dialogue can enhance referral quality, reduce outpatient referrals and improve GP-specialist relationships, with some demonstrating improved clinical outcomes. However, they often face sustainability challenges, and their cost-effectiveness and mechanisms of impact require further assessment. What does this study add?This qualitative study identifies key mechanisms through which virtual GP-specialist dialogue may lead to downstream benefits: enabling shared decision-making and delivering consultant-level care closer to home; empowering GPs to manage complex cases; and reducing overall workload across primary and secondary care systems. The programme theory developed can be used to guide future intervention design, implementation and evaluation.

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Navigating housing independence: transitions out of the parental home of young Australians with and without disability

Bright, T.; Bishop, G.; Mason, K.; Sully, A.; Gurrin, D.; Dickinson, H.; Kavanagh, A.; Aitken, Z.

2026-02-14 public and global health 10.64898/2026.02.11.26346107 medRxiv
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Young people are increasingly remaining in the parental home for longer - a trend associated with poorer mental health. There is little evidence on this transition for young people with disability. We used three waves of the Australian Census Longitudinal Dataset, a 5% sample of linked Census records. Two analyses compared transitions between 2011-2016 and 2016-2021 among people 15-34y living with parents at baseline with complete data on disability and housing. The proportion of people no longer living with parents at follow-up was calculated, comparing people with and without disability, along with absolute and relative inequalities. Young people with disability were half as likely to leave the parental home as their peers without disability. Inequalities were greatest for people 25-29y (relative difference 0.41 (95%CI 0.36-0.45), living outside major cities (0.48, 0.44-0.52), or with higher income (0.53 (0.47-0.59). Patterns were consistent over time. Targeted supports are needed to enable independent living. Points of interestO_LIWe found that less people with disability leave the parental home than people without disability C_LIO_LIWe also found the gap between people with and without disability was biggest outside major cities. C_LIO_LIThis may mean people with disability in rural, regional and remote areas find it more difficult to move out of home C_LIO_LIBetter housing and income supports are needed to help young people with disability live in the way they choose C_LI

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Parenting with Hope program among bereaved families in Colombia: A pre-post and quasi-experimental evaluation.

Villaveces, A.; Tucker, S.; Arroyo, S.; Blanco, P. J.; Colon, M.; Prias, H. E.; Pecserke, S.; Baldonado, N.; Flaxman, S.; Hillis, S. D.; Ratmann, O.

2026-01-28 public and global health 10.64898/2026.01.26.26344879 medRxiv
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BackgroundIn Colombia, internal violence, displacement, COVID-19, suicide, and climate crises threaten the survival of younger adults, many of whom are parents. Such premature mortality increases orphanhood risks. Evidence-based psychosocial support for surviving caregivers has potential to mitigate adverse impacts of orphanhood for bereaved children in crisis settings. Here, we adapted the Hope Group program from war-affected Ukraine to post-COVID-19 Colombia Parenting with Hope, and evaluated the effectiveness of psychosocial and parenting support delivered via home visits on improvements in caregiver mental health, violence against children, parenting practices, and child behavioral issues. MethodsParticipants (n=220) included surviving caregivers co-residing with children experiencing death of a parent or caregiver in the previous 12-36 months. Next-of-kin caregivers were identified through vital statistics data, death certificate annexes, radio/social media, schools, COVID-19 laboratories, and referrals. We used pre-post and quasi-experimental approaches to evaluate the effectiveness of Parenting with Hope. For both analysis types, we constructed Bayesian models to estimate mean change and percent change following completion of the 8-session program. ResultsBoth pre-post and quasi-experimental findings showed significant improvements across all mental health, violence prevention, parenting, and child outcomes. Pre-post results showed caregiver depression/anxiety ratings decreased by 91.2% (95% posterior credible interval (CrI) - 93.7, -87.6), and hopefulness increased by 43.8% (95% CrI 34.5, 54.8) and self-care, by 139.5% (95% CrI 107.5, 178.1). Each component measure of parenting practises (nonviolent discipline, positive parenting, parental monitoring, and parental involvement) improved significantly. By endline, violence against children had decreased by 63.9% (95% CrI -71.1, -54.4), and child externalizing and internalizing behaviors, by 74.4% (95% CrI, -78.0%, -70.3%). Pre-post and quasi-experimental findings showed equivalence. ConclusionThis study generalizes evidence for effectiveness of Parenting with Hope in crisis settings to surviving Colombian caregivers, on improved mental health, parenting practices, and reduced violence against children and child behavioral issues. Article Summary Parenting with Hope for families in crisis settings significantly improved mental health and parenting strategies in post-COVID-19 Colombia, generalizing effectiveness previously measured in war-affected Ukraine. Whats Known on This SubjectCaregiver death harms children long-term. Colombia experiences both community violence affecting caregivers and substantial COVID-19-related parental death burden. A Ukrainian program improved caregiver mental health, parenting, and reduced child violence, offering a model for Colombias prevention efforts. What This Study AddsWe report pre-post evidence of the Parenting with Hopes effectiveness in Colombian families experiencing bereavement. Adapted from Ukraine Hope Groups, the intervention shows consistent benefits and is a promising, transferable and scalable strategy to prevent violence against children in communities globally.

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Sexual orientation inequalities in self-harm and suicidality in England and Wales - A national population-based study

Bunk, H.; Ayoubkhani, D.; Nafilyan, V.; Becares, L.; Curcin, V.; Khanolkar, A. R.; Sharland, E.

2026-02-17 public and global health 10.64898/2026.02.12.26346182 medRxiv
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BackgroundSexual minority (SM) individuals have worse mental health than heterosexual peers. However, there is no total population-based and national-level evidence on differences in risk of self-harm and suicide by sexual orientation. This study provides the first national population-based estimates in England and Wales. MethodsUsing 2021 Census data linked with hospital records and death registrations, we analysed sexual orientation (SO) differences in: (i) at least one hospital inpatient admission/emergency attendance for intentional self-harm, and (ii) death by suicide. We calculated age-standardised rates per 100,000 people by SO between March 2021 and December 2023, and stratified by sociodemographic, geographical, socioeconomic and health-related variables. We calculated rate ratios for lesbian/gay/bisexual/other SO (LGB+) groups compared with heterosexuals to estimate sexual identity disparities. FindingsOur study population included 28.7 million people (mean age 48.1 years, 53.7% female, 84.2% White) aged [&ge;]16 years who self-reported their SO in Census 2021 and linked to an NHS number. LGB+ individuals had 2.52 (95% CI 2.48-2.56) times higher risk for self-harm and 2.17 (95% CI 1.98-2.37) times higher risk for suicide than heterosexual people. Relative risk of self-harm was highest for LGB+ females, younger adults, and Black individuals. Relative risk of suicide was highest for LGB+ females, older adults, and Black individuals. InterpretationThis study demonstrates stark inequalities in risk of self-harm and suicide by sexual orientation, consistent across multiple sociodemographic factors. These findings are important for informing government prevention programs and further mental health research. FundingThere was no external funding for this study. Research in contextO_ST_ABSEvidence before the studyC_ST_ABSThe substantial evidence on higher risk for self-harm and suicide in sexual minority groups in the UK (and wider Europe) is impacted by regional samples, younger populations, or surveys limited by smaller numbers precluding analyses by key sociodemographic factors (like sex, ethnic group, socioeconomic indicators, faith, housing situations and geographical indicators) or combining all sexual minority groups together. To date, no study has used total population-based data to examine sexual orientation inequalities in self-harm and suicide and in relation to a range of sociodemographic factors. Added value of this studyTo our knowledge, this is the first study in the UK to provide national population-based estimates of intentional self-harm and suicide by sexual orientation, including intersectional analyses across age, sex, ethnic group, and socioeconomic position. This study used a unique linkage between the census, hospital inpatient data, emergency care records and death registrations from across England and Wales, with a study population of 28.7 million people aged [&ge;]16 years who self-reported their sexual orientation in Census 2021 and linked to a National Health Service (NHS) number. Implications of all the available evidenceThis research provides national population-level evidence of substantial increased risk for self-harm and suicide among sexual minority individuals, compared with heterosexual individuals. This study also identified key groups of individuals at an increased risk of self-harm and suicide. These findings are important for informing government prevention programs and further research supporting the mental health of sexual minority groups.

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Global burden of stigma and discrimination against transgender and gender-diverse adults: a systematic review and meta-analysis

Barre-Quick, M.; Yeh, P. T.; Kennedy, C. E.; Azuma, H.; McLellan, C.; Cooney, E. E.

2026-04-23 public and global health 10.64898/2026.04.22.26351490 medRxiv
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Abstract Importance Stigma and discrimination against transgender and gender-diverse people are prevalent across many settings and may contribute to substantial health disparities. Objective To synthesize global evidence on the prevalence of stigma, discrimination, and resilience among transgender (trans) and gender-diverse adults. Data Sources A systematic search was conducted in PubMed, Embase, CINAHL, Cochrane Central, LILACS, and PsycInfo for articles published between January 1, 2010 and January 2, 2023. This database search was supplemented by grey literature and secondary reference searches. Article Selection Studies were eligible if they presented primary quantitative data on prevalence of stigma, discrimination, and/or resilience among trans and gender-diverse adults (aged 18 and over), with no restrictions on study design, language, or geographic region. Data Extraction and Synthesis Two independent reviewers extracted data using standardized forms, with discrepancies resolved by consensus. The JBI Critical Appraisal Checklist for Prevalence Articles was used to assess risk of bias. Random effects meta-analysis was conducted for dichotomous prevalence measures using inverse variance weighting and logit transformation; non-dichotomous prevalence data were summarized descriptively. Main Outcomes and Measures Outcomes included prevalence estimates for various forms of stigma (anticipated, perceived, internalized, and experienced), discrimination in legal/institutional settings (housing, healthcare, employment, police/prison), and resilience. Results A total of 97 articles, with data from 72,158 unique trans and gender-diverse participants across 26 countries, met inclusion criteria. Studies showed moderate levels of anticipated stigma, perceived stigma, and internalized stigma. Meta-analyses of 36 studies provided pooled estimates of discrimination prevalence across multiple domains: 21.4% in housing (e.g., eviction, rental denial), 24.6% in healthcare (e.g., denial of care, mistreatment), 32.8% in employment (e.g., hiring bias, workplace harassment), and 39.1% in police/prison settings (e.g., profiling, mistreatment). High heterogeneity was observed across studies, reflecting regional and methodological differences. Resilience scores ranged from moderate to high, indicating variation within trans and gender-diverse communities. Conclusions and Relevance This systematic review and meta-analysis found that stigma and discrimination against trans and gender-diverse adults are pervasive globally. Variation in stigma and discrimination across settings and regions underscores the need for targeted interventions and policy reforms. Funding World Health Organization through a grant from the Elton John AIDS Foundation and the Bill and Melinda Gates Foundation.

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"People need to be a bit more understanding that my body is wrecked": A qualitative exploration of inpatient hospital care for people living with multiple long-term conditions

Bellass, S.; Scharf, T.; Witham, M. D.; Threlfall, L.; Plummer, C.; Sayer, A. A.; Cooper, R.; on behalf of the ADMISSION Research Collaborative,

2026-02-11 health systems and quality improvement 10.64898/2026.02.08.26345540 medRxiv
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BackgroundLiving with multiple long-term conditions (MLTC) is becoming increasingly common with far-reaching consequences for individuals and healthcare systems. People with MLTC often face complex care pathways through health systems - especially hospitals, which are largely configured for specialist treatment of single conditions - yet evidence on people with MLTCs lived experience in the hospital setting is limited. This study aimed to understand the hospital care experiences of people living with MLTC who had recently had an inpatient stay. MethodsPeople with MLTC who had experienced an inpatient stay in hospital within the previous six months were recruited via three hospitals in England and via patient networks. Semi-structured one-to-one interviews were conducted with each participant, focussing on their experiences of care from admission to discharge. An inductive thematic analysis was undertaken. ResultsA total of 44 people (mean age 68.4 years, 23 women) who reported living with between 2 and 11 long-term conditions, the majority of whom (96%) reported that their most recent hospital stay was unplanned, participated in the study. Three themes were constructed from the interview data, reflecting perceptions at individual, interpersonal and organisational levels. Participants experiences were shaped by internalised narratives of hospital care, where care was expected to be focussed primarily on single conditions within a resource-constrained environment. Relationally, the degree of alignment between clinician and patient knowledge on conditions was a key contributor to whether hospital care was experienced positively or negatively, and participants perceptions of organisational constraints to holistic care gave insights into their views on system-level barriers shaping the provision of care for MLTC in the hospital setting. ConclusionExperiences of inpatient hospital care for people with MLTC are complex, diverse and shaped by expectations of care in a specialist setting configured to provide care for single conditions. Healthcare professionals should incorporate patients experiential expertise into decision-making processes through consultation with people with lived experience of MLTC. Redesigning hospital services to provide holistic care will require flexibility to respond to the wide spectrum of MLTC experiences.

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Evaluation of symptom checker formats to support health literacy and trust in AI: Results from an online randomised-controlled trial

Ayre, J.; Gallagher, K.; Smith, J.; Hudson, C.; Scott, A.; Woods, A.; Ng, C.; Wickramasinghe, Y.; Ma, I.; Nadesan, W.; Kapoor, G.; Edlund, G.; Butters, L.; Vu, T.; McCaffery, K. J.

2026-03-12 public and global health 10.64898/2026.03.11.26347036 medRxiv
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ObjectivesEvaluate the impact of online symptom checker formats on symptom management knowledge, symptom checker trust and acceptability, and behavioural intentions. DesignTwo 5-arm parallel-group online randomised controlled trials. SettingOnline survey. Participants2110 Australian adults recruited through online research panel in June 2025. Almost half identified as man/male (49%) and woman/female (51%), median age 49 years (IQR=28). Participants viewed a hypothetical health scenario (fever and vomiting) followed by a screenshot of an online symptom checker from national health service provider, healthdirect. InterventionsParticipants were randomised to symptom acuity level (low: self-care at home; or moderate: see a General Practitioner (GP) in 24 hours) and one of five symptom checker formats. The standard format showed the existing healthdirect symptom checker advice. The remaining formats were AI-enhanced versions. These included an AI-enhanced version with e.g. more tailored advice, rationale for acuity level, and AI disclosure statement. The other AI-enhanced formats had additional features: numbered steps, multimedia, and more detailed information about the use of AI. Main outcome measuresPrimary outcomes were intentions to follow the symptom checkers self-care advice and intentions to see a GP in 24 hours. Secondary outcomes were trust in advice, knowledge of symptom management, and acceptability of the tool. All outcomes were assessed immediately post-intervention; knowledge was also assessed after 2 weeks. ResultsWhen advised to self-care at home, the AI-enhanced groups reported lower intentions to see a GP in 24 hours (median 3.00 out of 5), compared to the standard (original) tool (median 4.00; adjusted p = 0.003). There were no other significant effects on intentions. Immediately following the intervention, participants who viewed an AI-enhanced format reported greater knowledge about how to manage current and changing symptoms, across both acuity levels (adjusted ps <0.001). Knowledge gains were not sustained at 2 week follow-up. There were no significant effects on trust or acceptability. ConclusionsParticipants who viewed the more tailored information in the AI-enhanced formats demonstrated stronger knowledge for managing symptoms than those who viewed the standard format. There was also some evidence that an AI-enhanced format may be more effective at reducing use of primary care for symptoms that can be managed at home. Trust and acceptability were high across formats, and the explicit use of AI did not impact significantly on these outcomes. Future research should investigate these formats using interactive prototypes across a wider variety of health contexts. RegistrationACTRN ACTRN12625000474459p Key messagesO_LIWhat is already known on this topic: Although online, evidence-based symptom checkers have been widely available from reputable health organisations for over a decade, they often face poor uptake and may not adequately meet health literacy needs of diverse users. C_LIO_LIWhat this study adds: Symptom checker features that could be implemented with AI, such as tailored information and a clear rationale for triage advice, may help support appropriate symptom management. Statements about the tools use of AI did not appear to impact trust or acceptability of the symptom checker tool. C_LIO_LIHow this study might affect research, practice or policy: Findings from this study suggest that using AI to enhance symptom checker advice may not impact negatively on trust and acceptability of the tool, and may improve appropriate symptom management. Further research is needed to investigate AI-enhanced symptom checker formats using interactive prototypes across a wider variety of health contexts. C_LI

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What works, for whom, and under what circumstances for recipients of training in opportunistic behaviour change conversations: a mixed methods realist evaluation protocol

Nichol, B.; Rodrigues, A. M.; Anderson-Weaver, R.; Dalkin, S.; Hunter, R.; Brown, H.; Morganer, C.; Stuart, B.; Albury, C.; Haighton, C.

2026-03-23 public and global health 10.64898/2026.03.19.26348867 medRxiv
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Background Making Every Contact Count (MECC) is a person-centred initiative that enables service providers across settings to support behaviour change through conversations about health and wellbeing. MECC has been widely implemented across the UK and internationally, although training approaches vary considerably and do not consistently translate into MECC delivery. Evidence suggests that Healthy Conversation Skills (HCS) training, which supports service users to identify their own solutions, may be an acceptable and effective means of delivering MECC across settings. This realist evaluation aims to understand which elements of HCS training work, for whom, under what circumstances, in what respects, to what extent, and why, to inform the adaptation of HCS across settings to ensure that all recipients are equipped to deliver MECC. MethodsThis mixed-methods realist evaluation will comprise pre- and post-training surveys (at baseline, immediately post-training, and approximately eight weeks post-training) and realist interviews. Two participant groups were selected for comparison: service providers working or volunteering in the voluntary, community, and social enterprise (VCSE) sector, and undergraduate pharmacy students. Initial programme theories were developed through abductive reasoning, literature scoping, and stakeholder engagement. Survey data will assess outcomes of HCS training, while realist interviews will explore how these outcomes are generated by underlying mechanisms within specific contexts. DiscussionA refined programme theory will be produced, explaining how and why HCS training leads to MECC delivery across different settings. Findings will inform how HCS training can be adapted for distinct audiences, identify the core components of MECC training that must be preserved, and guide future evaluations by examining whether HCS training translates into sustained MECC delivery. The findings of this study will inform resource allocation for preventative health interventions outside of healthcare settings and thus have the potential to shape public health policy, empower non-specialist providers, and strengthen strategies for disease prevention.