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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 0.05% match score for this journal, so anything above that is already an above-average fit.

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Support needs, support use and perceived helpfulness of support in a cohort of people bereaved during the COVID-19 pandemic: Insights from a longitudinal survey

Goss, S.; Barawi, K.; Sutton, E.; Oates, R.; Seddon, K.; Sivell, S.; Longo, M.; Penny, A.; Selman, L. E.; Harrop, E.

2026-01-08 palliative medicine 10.64898/2026.01.06.26343556
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BackgroundThe negative impacts of the COVID-19 pandemic on bereavement experiences and grief outcomes are relatively well documented. However, less is known about the evolving support needs of people bereaved during this time, what support they used and, crucially, how this support helped (or hindered) their coping. Beyond the pandemic context, evidence of how bereavement support needs relate to the use and perceived helpfulness of different types of support is needed to inform bereavement service provision and policies. MethodsA longitudinal survey of people bereaved (any cause of death) during the COVID-19 pandemic in the UK, with data collected at four time points: baseline (T1; n = 711), c. 8 (T2; n = 384), 13 (T3; n = 295), and 25 (T4; n = 185) months post-bereavement. Support needs and use of informal and formal support sources were captured quantitatively at all time points, with the perceived helpfulness of support captured as free-text data and analysed thematically. Future support preferences were obtained in the final survey round (T4). At T2-T4, participants completed the Traumatic Grief Inventory (TGI-SR) to assess for indications of Prolonged Grief Disorder (PGD). Quantitative data were analysed descriptively. ResultsIn early bereavement, findings demonstrate high levels of support needs across multiple domains, with the highest needs at baseline relating to managing grief and feelings surrounding the loss (49.9-59.8% across 4 items), feelings of anxiety and depression (52.8%) and social isolation and loneliness (52.0%). Support needs decreased markedly over time but persisted for those with indicated PGD, of whom 44.2% at two-years post-bereavement (T4) needed help with coming to terms with how their loved one died and with expressing their feelings and feeling understood and 41.2% with loneliness and isolation. Participants primarily relied on support from family and friends, followed by online community support and one-to-one support (counselling), with support use decreasing over time. Those with indicated PGD engaged with all types of support more frequently across all time points, yet a third (35.3%) did not access any formal bereavement or mental health support during the first year following their bereavement. The qualitatively described benefits of different informal and formal support sources reflected and demonstrated their efficacy in meeting these support needs, though inadequacies in support were also highlighted, particularly from friends and family. Support preferences for future bereavements under non-pandemic circumstances most commonly included family and friends (96%), in-person one-to-one support (75%), self-help resources (63%) and GPs (61%). ConclusionFindings illustrate the multiple and varied emotional and social support needs of bereaved people, which for those with indicated PGD endured over time. While these needs can be effectively met by informal and formal support-types, dissatisfaction with support from friends and family, and under-utilisation of formal support services amongst high-risk groups, suggests significant unmet need and missed opportunities. This highlights the importance of strengthening the support available to people within their networks and communities and improving access to a wide variety of support options, according to peoples needs and preferences.

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How does palliative care fit into national health spending? A secondary analysis of trends in long-term healthcare expenditure in the United Kingdom

De-Alker, E.; Alcock, A.; Murtagh, F. E.

2026-01-24 palliative medicine 10.64898/2026.01.23.26344608
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ObjectivesCurrent methods of health expenditure reporting make spending on palliative care services difficult to quantify. This paper (1) examines trends in the components of government (public) spending on health-related long-term care reported in the UK Health Accounts for the period of 2013 to 2022 to establish the wider context of palliative care expenditure, and (2) relates these trends to existing knowledge of expenditure on specialist palliative care services in the UK. MethodsWe conducted a descriptive secondary analysis of annually reported government expenditure on health-related long-term care between 2013 and 2022 from the UK Health Accounts dataset. We contrasted this with UK governmental and non-governmental spending on specialist palliative care services using annual expenditure figures reported by Hospice UK. ResultsReal-terms UK government spending on health-related long-term care grew by {pound}6.4 billion (22.9%) between 2013 and 2022, from {pound}27.9 to {pound}34.3 billion. Real-terms spending on specialist palliative care grew by {pound}110 million (10.7%) over the same period, from {pound}1,027 to {pound}1,137 million. In 2022, spending on inpatient care comprised the majority of government health-related long-term care expenditure ({pound}22.6 billion; 65.9%). Home-based care comprised one-third ({pound}11.8 billion; 33.4%). Outpatient care accounted for 0.7% ({pound}260.2 million). Equivalent data was not available for analysis of specialist palliative care expenditure. ConclusionsLow granularity of UK national health expenditure accounts limits national and international comparisons of spending on palliative care. However, it is clear that UK expenditure on specialist palliative care services has not kept pace with growth in expenditure on health-related long-term care. What is already known on this topicO_LIGlobal demand for palliative care is increasing as rates of serious life-limiting illness, dementia, cancer and multiple long-term conditions rise internationally. C_LIO_LIIncreasing complexity of illness and population ageing are two factors implicated in both rising healthcare expenditure and growing demand for palliative care internationally. C_LIO_LIThe UK has previously been ranked as providing the highest quality of palliative care amongst international competitors - however, concerns about the longevity of funding sources for specialist palliative care services has led to calls for further investment. C_LI What this study addsO_LIReal terms UK government spending on health-related long-term care - which includes, but is not limited to, palliative care services - increased by 22.9% between 2013 and 2022. C_LIO_LIOver the same period, UK spending on specialist palliative care services as reported by Hospice UK grew by only 10.7%. C_LIO_LIOur results take into account health-related social care spending, which forms a key part of care for people living with illness, including those receiving palliative care services. C_LI How this study might affect research, practice or policyO_LIThe future of funding for specialist palliative care in the UK is uncertain, and current funding frameworks are complex. This paper adds to ongoing policy discussions surrounding this issue, highlighting the discrepancy between growth in public sector spending on health-related long-term care and overall spending on specialist palliative care services (from governmental and non-governmental sources). C_LI

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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
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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
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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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"I need policymakers to listen": a stakeholder needs assessment concerning anticipatory injectable medication systems, using a novel qualitative survey

Perera, B.; Bowers, B.

2026-01-03 palliative medicine 10.64898/2026.01.02.26343333
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BackgroundAnticipatory injectable medications for symptom control are a key end-of-life care intervention. However, ensuring their safe and timely use in the community is a global challenge. The needs and priorities of stakeholders involved in processes for prescribing and administering these medications remain underexplored. We must understand these perspectives to design inclusive and adaptive systems. AimTo identify the needs and priorities of key stakeholders involved in community-based systems for using anticipatory injectable medications. DesignWe adopted a qualitative exploratory design, using an online survey between September and October 2024. Participants provided anonymised demographic information and completed up to four prompts capturing their stakeholder role, needs and priorities. Data were analysed using a combined inductive-deductive framework to produce synthesised shortlists of priorities and needs. Setting/participantsUK-based professional and public participants were recruited through social media, professional networks, charities, and public engagement events. ResultsIn total, 439 participants contributed 729 responses across various stakeholder groups. Findings revealed substantial diversity in stakeholder needs and priorities, both within and between groups. However, most stakeholder groups prioritised timely care, minimising of suffering, and wanted nationally consistent guidance for using injectable medications. Broader societal influences also shaped responses. ConclusionsOur findings highlight wide diversity in priorities and needs between stakeholders for using anticipatory injectable medications in the community. We propose that inclusive system design should include comprehensive assessment of key stakeholders needs and priorities, with the aim of providing better care. Our study demonstrates that stakeholder needs assessment offers a valuable framework to achieve this. What is already known about the topic?O_LIAnticipatory injectable medications are a widely used intervention in several countries to support timely end-of-life symptom control at home. C_LIO_LIThere are ongoing challenges with delays, inconsistent access, and variations in prescribing and governance across regions, indicating that system design influences both timeliness and safety. C_LIO_LIExisting research has primarily focused on the needs of individual professional groups, and no prior work has mapped the differing needs of all stakeholders involved in these systems. C_LI What this paper adds?O_LIOur study demonstrates that stakeholder groups have diverse needs but most share some core priorities -timely care, national consistency in practice guidance, and minimising suffering. C_LIO_LIWider societal factors and concerns shape stakeholder expectations of end-of-life medication systems. C_LIO_LIOur approach to stakeholder needs assessment reveals system requirements that consensus-based or single-perspective approaches often overlook. C_LI Implications for practice, theory, or policyO_LISystem improvements should be tailored to the specific needs of key stakeholder groups rather than assuming uniform priorities. C_LIO_LIStrong cross-stakeholder support exists for national, practical guidance on anticipatory prescribing, equipment, training, and governance. C_LIO_LIStakeholder needs assessment offers a useful method for designing safer, more responsive end-of-life medication systems. C_LI

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An external, contemporary evaluation of the Epic End of Life Care Index among hospitalized patients across two large health systems: A retrospective cohort study

Kohn, R.; Courtright, K. R.; Grau-Sepulveda, M.; Olsen, M. K.; Madden, V. L.; Sewell, B.; Sheu, D.; Ahmad, Y. S.; Auriemma, C. L.; Nimetz, A.; Dennos, A.; Hart, K. W.; Lee, J.; Creekmur, B.; Nau, C. L.; Nguyen, H. Q.; Wang, S.; Boyer, G.; Lundstrom, T.; Postema, L.; Roth, D. J.; Vandewarker, J.; Halpern, S. D.; Lokhnygina, Y.

2026-01-03 palliative medicine 10.64898/2026.01.02.26343350
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BackgroundThe Epic End of Life Care Index (EOLCI) predicts one-year mortality and was developed to improve serious illness care. However, prior external EOLCI evaluations had limited sample sizes, populations, and equity evaluations. In preparation for a multi-system pragmatic clinical trial, we sought to evaluate the EOLCI performance and equity in the trials two participating health systems. ObjectiveEvaluate EOLCI model performance overall and across key subgroups. Design/Setting/PatientsRetrospective cohort study of patients hospitalized for [≥]36 hours in 2022 to 39 hospitals in the Trinity Health and Kaiser Permanente Southern California (KPSC) health systems. MeasurementsWe predicted one-year mortality risk stratified by health system using the EOLCI, a logistic regression model including age, sex, race/ethnicity, ethnicity, insurance, and diagnoses. We evaluated model performance using Scaled Brier Scores (SBS; range -1 to 1; composite measures of calibration and discrimination), calibration plots, and c-statistics. ResultsAmong 116,749 Trinity patients with 154,063 encounters, 12,054 (10.3%) patients died within one year. Among 94,489 KPSC patients with 133,043 encounters, 16,872 (17.9%) died within one year. The SBS was -0.007 at Trinity and 0.178 at KPSC. Calibration was poor for both. Trinitys discrimination was acceptable/good (c-statistic 0.76, 95% CI 0.76-0.77), and KPSCs was good/very good (c-statistic 0.81, 95% CI 0.81-0.81). Model performance across subgroups was similar to the overall cohort. LimitationsDeath data were collected exclusively within Trinity and KPSC, risking outcome misclassification; several subgroup evaluations were limited by small sample sizes. ConclusionsAn external evaluation of the widely available Epic EOLCI demonstrated adequate to very good discrimination, poor calibration, and equitable performance across sociodemographic characteristics and diagnoses in two of the nations largest health systems. Primary funding sourcePCORI PLACER-2022C3-30553.

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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
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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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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
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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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"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
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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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Lived Experiences of Never-Married Aging Nurses in Clinical Practice: A Qualitative Study

TORRENO, F. N.; FRINCESS, F.

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The global nursing workforce is aging, yet limited research has explored the lived experiences of never married nurses entering midlife and later adulthood. Existing studies have primarily focused on burnout and retention, with less attention to the social and existential dimensions of aging without a spouse or children. This study aimed to explore the experiences of never married clinical nurses aged 40 years and older, focusing on perceptions of aging, professional identity, social support, and future security. A qualitative descriptive design was employed. Twenty-five never married nurses aged 44-62 years were recruited through purposive sampling from intensive care, emergency, medical, surgical, oncology, outpatient, and community departments across four government hospitals. Semi-structured interviews were conducted and analyzed using reflexive thematic analysis. Trustworthiness was ensured through member checking, peer debriefing, and maintenance of an audit trail. Four themes were identified: Nursing as a Life Anchor, where professional identity provided meaning and structure; Independence Coexisting with Loneliness, reflecting autonomy alongside episodic loneliness; The Invisible but Available Workforce, describing expectations of greater work availability due to single status; and Anticipating an Uncertain Future, capturing concerns about retirement, declining health, and limited advocacy in later life. Never married aging nurses experience a complex balance of professional fulfillment, autonomy, vulnerability, and uncertainty. Healthcare organizations should recognize this subgroup and consider equitable workload policies, tailored retirement planning, and psychosocial support to promote well-being and workforce sustainability.

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Certified nursing assistants' perspectives on their role in advance care planning for older persons: a qualitative study

Jepma, P.; Bos, A.; Boulahfa, O.; Latour, C.; Buurman, B.; van Rijn, M.

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BackgroundAdvance care planning in older persons with palliative care needs is often not (timely) initiated. Certified nursing assistants are closely involved in the (daily) care for older persons and have important insights regarding their clients care preferences and quality of life. However, their role in advance care planning is currently overlooked. AimTo examine the perspectives of nursing assistants on their role in advance care planning for older persons. DesignA qualitative descriptive study design using semi-structured interviews. Setting/participantsFifteen nursing assistants working in community care and nursing homes in the Netherlands were interviewed between March and December 2023. A combined inductive and deductive thematic analysis was performed using the Capability, Opportunity, Motivation Behavioral model. ResultsMost nursing assistants were not structurally involved in advance care planning and were in need of additional knowledge and skills (capability). The team culture affected nursing assistants opportunities and motivation to participate in advance care planning both positively and negatively. The opportunity was further shaped by nursing assistants relationship with clients and relatives and time management, while motivation also depended on personal circumstances. ConclusionThis study found several barriers and facilitators affecting nursing assistants role in advance care planning for older persons. Structurally involving nursing assistants in advance care planning, supporting their work environment, and empowering them can foster equal collaboration with other healthcare professionals. This might contribute to the timely initiation of advance care planning and palliative care for older persons. Key statementsi) What is already known about the topic?O_LIAdvance care planning enables patients, relatives, and involved healthcare professionals to define and discuss goals and preferences for current and future medical treatment and care. C_LIO_LICertified nursing assistants are often closely involved in the (daily) care for older persons and their relatives, providing important insights into their preferences and quality of life. C_LIO_LINursing assistants are currently not structurally involved in the interprofessional collaboration regarding advance care planning. C_LI ii) What this paper addsO_LIVariation was observed in nursing assistants roles in advance care planning across care teams and settings, with most indicating a need for additional knowledge and skills (capability). C_LIO_LIThe team culture affected nursing assistants opportunities and motivation to participate in advance care planning both positively and negatively. C_LIO_LIThe opportunity was further shaped by nursing assistants relationship with clients and relatives and time management, while motivation was also depended on personal circumstances. C_LI iii) Implications for practiceO_LIStructural involvement of certified nursing assistants in advance care planning can contribute to timely initiation of advance care planning and palliative care for older persons. C_LIO_LIA supportive work environment that enables nursing assistants to develop their skills and grow professionally can facilitate an advance care planning process involving the expertise of all healthcare professionals. C_LIO_LIThe empowerment of nursing assistants could help them to become a more equal partner in advance care planning in collaboration with other involved professionals. C_LI

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Front-Line Decision-Making: A Thematic Analysis of Interviews with Hospital Staff on Referrals, Admissions, and Care for People with Multiple Long Term Conditions

Pretorius, S.; Bellass, S.; Cooper, R.; Evision, F.; Gallier, S.; Howe, N.; Sapey, E.; Sheppard, A.; Suklan, J.; Sayer, A. A.; Witham, M. D.

2026-02-09 health systems and quality improvement 10.64898/2026.02.04.26345456
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BackgroundMultiple long-term conditions (MLTC) are increasingly common and place significant strain on healthcare systems designed around single-organ conditions, often resulting in fragmented and reactive care for people living with MLTC. There is limited understanding of how health care professionals (HCPs) make decisions for and with individuals with MLTC at the point of hospital presentation. This study examined how HCPs in emergency and acute settings make decisions around pathways and places of care for people with MLTC, exploring the factors that shape clinical judgement, the challenges HCPs navigate in practice and structures that influence clinical decision-making. MethodsWe conducted semi-structured, individual interviews with 40 NHS professionals working in emergency departments (EDs) and acute assessment units across multiple regions, roles, and specialties. Participants included consultant physicians, resident doctors, senior nursing staff and allied health professionals. Interviews focused on how decisions were made around referrals, admissions, and care planning for people with MLTC. Data were analysed thematically using an inductive approach. ResultsFour themes were identified: A journey of uncertainty, Within and beyond limitations, Structures of care and Implementing relational care. Clinical decision-making is shaped by clinical uncertainty, limited resources, care approaches, and interpersonal relationships and communication. Fragmented services and single-disease pathways complicate care, but participants highlighted the value of continuity, communication, and relational approaches. Challenges include resource limitations, rigid pathways and limited community support. Key enablers of clinical decision-making include integrated care, ownership, and early conversations about priorities. ConclusionsClinical decision-making by HCPs in hospitals for patients with MLTC is complex and shaped by systemic misalignment, where clinical realities clash with health system structures. Improving clinical decision-making around referrals, admissions and care planning for people with MLTC will require adapting systems and training to reflect the realities of MLTC. Potentially beneficial adaptations include strengthening relational and multidisciplinary approaches and expanding intermediate care to reduce avoidable admissions.

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Mechanisms of change in a dog-assisted psycho-oncological group intervention: An explorative qualitative interview study

Topf, C.; Rutenkroeger, M.; Scholl, I.; Hahlweg, P.

2025-12-17 oncology 10.64898/2025.12.16.25342361
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BackgroundCancer survivors face substantial psychosocial stress in addition to disease-related challenges, often resulting in mood and anxiety disorders. Psycho-oncological interventions, such as group psychotherapy, are key in addressing these issues. Dog-assisted interventions also have the potential to alleviate psychosocial stress. This study aimed at investigating experienced mechanisms of change of a dog-assisted psycho-oncological group intervention (DAPOGI). MethodsAn exploratory cross-sectional qualitative study with semi-structured interviews with group participants (i.e., participating cancer survivors) and HCPs, (i.e., psychologists, dog handler) of a DAPOGI for highly anxious cancer survivors was carried out. Data was analyzed using qualitative content analysis. ResultsIn eleven interviews with eight group participants and three HCPs, various mechanisms of change were identified, particularly related to the group setting (e.g., sharing experiences for emotional release) and the presence of the dog (e.g., calming effects, promoting cohesion and therapeutic relationships). Various mechanisms were reported, emphasizing the dogs positive impact on the overall group therapy experience. We found great overlap between participants and HCPs experiences. Discussion and conclusionThis study suggests that DAPOGIs may be a valuable way to support psychologically distressed cancer survivors by enhancing traditional psycho-oncological group therapies through unique dog-related mechanisms of change. These mechanisms appear to surpass those of general group psychotherapy, fostering more positive experiences for group participants and HCPs alike. While these findings are encouraging, further research and clinical trials are needed to confirm the effectiveness of DAPOGIs and refine their clinical application.

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Exploring Nurses Perspectives on Video Consultations and the Nurse-Patient Relationship

Groth, S.; Brodsgaard, A.; Risom, S. S.; Hove, J.; Rosenstrom, S.

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AimThis study aims to deepen our understanding of how outpatient clinic nurses experience the use of video consultations. Further, the prerequisites that outpatient clinic nurses find important to increase the usage of video consultations in outpatient clinics. Materials and methodsA hermeneutic qualitative exploratory approach was utilised to investigate these experiences and perceptions comprehensively. Data were collected through two qualitative focus group interviews with a purposive sample of 12 nurses from two Danish cardiology outpatient clinics. ResultsData provided insights into the perspectives of nurses, resulting in three main themes: Video consultations must be used at the right time, Nursing care must remain as a relational practice, and Missing initiatives for enabling nurses to use video consultations. The study highlights the importance of organisational support and infrastructure in shaping nurses attitudes toward video consultations. Strategies for successful implementation include targeted training programmes, user-friendly technology, and a well-defined approach. Public ContributionsNo Patient or Public Contribution

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Adherence to Chemotherapy Among Patients with Advanced Epithelial Ovarian Cancer in the Netherlands and Its Impact on Survival: A Nationwide Cohort Study

Said, S. A.; Wenzel, H. H. B.; van Altena, A. M.; Walraven, J. E. W.; IntHout, J.; de Hullu, J. A.; van der Aa, M. A.

2026-02-02 oncology 10.64898/2026.01.30.26345198
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ObjectivePopulation-based information regarding adherence to first-line chemotherapy in epithelial ovarian cancer is scarce. This study aimed to evaluate chemotherapy adherence, reasons for chemotherapy modifications, and associations with overall survival. MethodsAdvanced-stage epithelial ovarian cancer patients diagnosed between January 2015 and December 2021 were identified from the Netherlands Cancer Registry. Patients who underwent cytoreductive surgery combined with platinum- and taxane-based chemotherapy were included. Patients were categorized into two groups: adherent (patients without modifications) and non-adherent (patients with modifications: dose reduction, chemotherapy interruption, and/or reduction in chemotherapy cycles). Reasons for modifications were assessed. Kaplan-Meier survival curves and Cox proportional hazards models were used to analyze overall survival. ResultsAmong the cohort (N = 3,687), 54% of patients underwent chemotherapy modifications. Dose reduction (38%) was the most common, followed by interruption (24%) and reduction in chemotherapy cycles (9%). Non-adherence was associated with poorer performance scores, higher comorbidity indices, and undergoing primary cytoreductive surgery. Neurotoxicity and hematologic toxicity were the primary reasons for modifications in platinum (33% and 37%) and taxane (47% and 35%) agents. No association with survival was found for dose reduction and interruption. However, reduction in chemotherapy cycles was associated with lower 5-year overall survival (32% (95% CI 26%-38%) vs. 36% (95% CI 34%-38%)), remaining significant after multivariable adjustment (hazard ratio 1.36; 95% CI 1.17-1.59). ConclusionA significant proportion of Dutch advanced-stage epithelial ovarian cancer patients undergo chemotherapy modifications. No impact on overall survival was found for dose reduction or chemotherapy interruption, warranting prospective studies. Reduction in chemotherapy cycles was negatively associated with overall survival, possibly reflecting underlying treatment ineffectiveness. Key messagesO_ST_ABSWhat is already known on this topicC_ST_ABSGuideline-recommended chemotherapy for advanced epithelial ovarian cancer is often difficult to deliver in routine practice, and real-world data on adherence and its impact on survival are limited. What this study addsIn this nationwide retrospective cohort, over half of patients experienced chemotherapy modifications; dose reductions and interruptions were not associated with poorer overall survival, whereas a reduction in the number of cycles showed an association with worse outcomes, although this may partly reflect underlying disease severity or treatment response. How this study might affect research, practice or policyOur findings suggest that standard dosing and treatment duration of six cycles may not always be necessary, emphasizing the need to tailor treatment plans to optimize both efficacy and tolerability in advanced-stage epithelial ovarian cancer patients

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Adaptation and psychometric evaluation of the ENhancing Assessment of Common Therapeutic factors (ENACT) tool to build the capacity of primary care physicians in low-resource settings

Humayun, A.; Nisa, A.; ul Haq, I.; Najmussaqib, A.; Muneeb, N. u. A.

2026-01-22 psychiatry and clinical psychology 10.64898/2026.01.20.26344430
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BackgroundWith the global focus on task-sharing initiatives to bridge the treatment gap, the assessment of competencies of non-specialists is essential. The ENhancing Assessment of Common Therapeutic factors (ENACT) was developed to assess the competence of non-specialists to deliver psychosocial interventions, but the evidence regarding its application, implementation and adaptation process is limited. The present study aims to fill this gap by adapting and pilot testing the ENACT tool for resource-constrained settings. Methods and ResultsWe used a sequential, mixed-methods approach to adapt and pilot test the ENACT tool for evaluating therapeutic skills of non-specialists trained in mhGAP trainings. The adaptation process consisted of selection of competencies through literature review and focus group discussion. This was followed by designing a test strategy comprising development of a case vignette, its iterative refinement and adapting scoring framework. Lastly, feasibility was tested in the mhGAP workshop setting. Eight competencies were retained based on their relevance, comprehensibility and feasibility. Each competency was rated on a four-point ordinal scale, with level 1 indicating no skill, while 2, 3 and 4 reflecting some, all and advanced skills, respectively. Role-plays were video-recorded and rated by trained raters. Good inter-rater reliability and significant correlation between competencies were observed. Discussion/ConclusionENACT can be used to assess therapeutic skills but must be paired with structured rater training and contextual adaptation. Our study addressed its implementation challenges by making it manageable with limited resources, time and raters, making it scalable for low-resource settings. Our findings can inform mhGAP training design and delivery, facilitate in shifting its emphasis from a biomedical centered training to patient-centered approach. It can also guide curriculum refinement, identify priority skill areas for refresher trainings, and serve as mechanism for quality improvement for training and supervision. Lastly, it can inform policy decisions to integrate foundational competencies into large-scale training and supervision systems.

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The associations of lifestyle factors with fatigue and the ability to work in the first year after colorectal cancer surgery and rehabilitation

Vlaski, T.; Caspari, R.; Fischer, H.; Bilsing, B.; Fernandes Almeida, C. M.; Hoffmeister, M.; Slavic, M.; Steindorf, K.; Brenner, H.; Schoettker, B.

2026-02-18 epidemiology 10.64898/2026.02.17.26346469
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BackgroundThe dynamic associations of lifestyle factors with fatigue and work ability in colorectal cancer (CRC) from pre-diagnosis, over rehabilitation until convalescence in the first year after rehabilitation are largely unexplored. MethodsN = 682 CRC patients were recruited for the MIRANDA cohort study in 4 German rehabilitation clinics. The five-component Healthy Lifestyle Score (HLS; smoking, alcohol, diet, physical activity, BMI) was assessed pre-diagnosis, during rehabilitation (which was up to 12 months after surgery), and 12 months after rehabilitation. Fatigue and the ability to work were assessed during rehabilitation and in 3-month-intervals thereafter. ResultsThe HLS was rather stable over time, whereas fatigue and ability to work improved in the first 3 months after rehabilitation and remained stable thereafter. Higher HLS points, either assessed prior diagnosis or during rehabilitation, were associated with lower fatigue and better ability to work during in-patient rehabilitation. Compliance with the smoking criterion was the most important factor. Compliance with the physical activity criterion during rehabilitation was also associated with fatigue and ability to work during rehabilitation. In longitudinal analysis adjusted for fatigue and ability to work at rehabilitation, pre-diagnosis adherence to the alcohol consumption criterion was associated with favorable changes of fatigue and ability to work from rehabilitation to 3- and 12-month follow-up. However, the total HLS and other life-style factors were not associated with the outcomes in longitudinal analysis. ConclusionsAddressing lifestyle factors during rehabilitation is an important cornerstone in fatigue management and can improve the ability to work of CRC patients.

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Clustering high-cost patients in England using machine learning: a population-based cohort study

Wang, S.; Anselmi, L.; Sutton, M.; Kontopantelis, E.; Beaney, T.; Anderson, M.

2025-12-30 health systems and quality improvement 10.64898/2025.12.23.25342912
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ObjectiveTo identify clusters of high-cost patients in England based on diagnoses and sociodemographic characteristics to inform targeted population health management. DesignA retrospective population-based cohort study using unsupervised machine learning. SettingEnglish primary care electronic health records from the Clinical Practice Research Datalink, linked to Hospital Episode Statistics for hospital records and Office for National Statistics mortality data. Participants10,119,490 adult patients aged 18 years or over registered with 1,397 general practices in England on 1 April 2018. High-cost patients were defined as the top 1% of total healthcare spending (n=101,195). Additional high-cost population were examined, including age-specific subgroups, patients who died during the year and patients in the top 1% of unplanned care costs. Main outcome measuresPrimary and secondary care costs in financial year 2018/19. Clusters of high-cost patients defined using unsupervised machine learning based on age, sex, area-level deprivation, ethnicity, and diagnoses recorded during 2006/07-2018/19. ResultsHigh-cost patients accounted for GBP1.8billion (26.8%) of GBP6.6billion population costs. Mean annual costs per high-cost patients were GBP17,485 (median GBP14,609; interquartile range: GBP12,028 to GBP19,633) compared with GBP653 (GBP103; GBP14 to GBP352) in the overall population. Hierarchical clustering identifying nine clusters was the optimal solution based on evaluation combining multiple validity and stability metrics. Across those clusters, mean age ranged from 56 to 79 years, and mean annual costs ranged from GBP15,792 (95%CI GBP15,629 to GBP15,955) to GBP19,107 (GBP18,784 to GBP19,430). Notable clusters produced across clustering approaches and high-cost populations, including younger people with liver disease and mental health conditions, patients with nodal metastases, patients with prostate cancer and hyperplasia, and older people with cardiovascular disease and dementia. ConclusionHigh-cost patients are a heterogeneous population with distinct clinical and sociodemographic profiles and utilization patterns. Clustering across multiple high-cost populations identified recurrent clusters, highlighting common pathways of high expenditure, while also revealing population-specific patterns of need. Incorporating cluster-based approaches into population health management may improve the targeting of case management programmes, optimise resource allocation, and support more effective and sustainable health system planning. What is already known on this topicO_LIA small proportion of patients account for a large share of healthcare costs, and are a priority for population health management. C_LIO_LIPrevious clustering studies show heterogeneity among high-cost patients, but are often limited by scale, care settings, or lack of robustness assessment C_LI What this study addsO_LIUsing linked English primary and secondary care data for over 10 million adults, the top 1% high-cost patients accounted for more than a quarter of total costs. C_LIO_LIBy comparing multiple clustering methods across several high-cost populations, we identify recurrent, clinically interpretable subgroups, including younger adults with liver disease and mental health conditions, highly deprived, with heavy emergency use; oncology with nodal metastases, intensive planned pathways and high mortality; older men with prostate cancer or hyperplasia, sustained planned care; and older adults with cardiovascular disease and dementia, recurrent emergency admissions and high primary-care contact C_LI How this study might affect research, practice or policyO_LIRobust segmentation can complement risk prediction by supporting more tailored, multidisciplinary care for high-cost patients. C_LIO_LICluster profiles can inform population health management and service planning in universal healthcare systems. 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
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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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Determinants of Collaborative Physician-PA Teams in Ambulatory Care: A Qualitative Study

Nordan, A. G.; Ward, I.; Stancil, M. L.; Schmale, G.; Bodner, G.

2026-02-17 health systems and quality improvement 10.64898/2026.02.16.26346411
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BackgroundThe physician assistant (PA) workforce has expanded rapidly in the United States, increasing the importance of effective physician-PA collaboration. Although PAs improve patient outcomes and access to care, the determinants of effective collaboration has not been well studied. North Carolina provides a relevant context due to its growing PA workforce and supervisory regulatory structure, in which physicians retain administrative responsibility for PA supervision across practice settings. This study examines determinants of effective physician-PA collaboration in ambulatory care settings in North Carolina. MethodsFour virtual focus groups were conducted with practicing physicians (n=7) and PAs (n=9) across multiple specialties in NC. Transcripts were analyzed using thematic analysis to identify facilitators and barriers to collaboration. ResultsThematic analysis identified six major themes reflecting relational, organizational, and systemic influences on teamwork. Findings demonstrate collaboration evolves over time through early-career mentorship, continuity of working relationships, and progressive trust development. Differences in professional identity, power dynamics, and misunderstanding of PA scope of practice influenced autonomy and delegation. Systemic factors such as reimbursement structures and organizational supervisory policies hindered efficient teamwork. LimitationsFindings are based on a small, purposive sample within a single state and may not be generalizable to all ambulatory settings or regulatory environments. Perspectives may also reflect self-selection bias among participants with strong views on collaboration. ConclusionsEffective physician-PA collaboration depends on intentional onboarding, role clarity, interprofessional education, and alignment of organizational policies with regulatory standards to support team-based care.