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Abstract Background Specialist palliative care teams (SPCTs) have significant benefits for patients with advanced disease or frailty, including improved quality of life, greater satisfaction with care, and less potentially inappropriate care at the end of life. Experienced SPCTs are recognised to have higher referral rates compared to novice teams. The aim of this study was to assess the development of hospital-wide integration of specialist palliative care (PC) and of SPCTs in Dutch hospitals between 2014 and 2020. Methods Three cross-sectional surveys of SPCTs in Dutch hospitals were conducted in 2015, 2018 and 2021. Key members of the hospital SPCTs completed questionnaires about the preceding year that included items on hospital and PC program characteristics, hospital-wide integration of specialist PC, and SPCT characteristics (92 hospitals in 2015, 79 in 2018 and 74 in 2021). The analysis included hospitals with an operational SPCT, as determined by providing inpatient PC consultation services. Univariate analyses compared hospitals and SPCTs by year. Significance was determined by p-values

Introduction In rheumatoid arthritis (RA), immunosuppressive therapies may achieve symptomatic relief, but do not induce long-term, drug-free remission. Meanwhile, the lifelong use of immunosuppressive drugs confers increased risk for malignancy and infections. As such, there is an unmet need for novel treatments that selectively target the pathogenic immune response in RA by inducing tolerance to autoantigens. Autologous cell therapy using antigen-loaded tolerogenic dendritic cells (tolDCs) aims to reinstate autoantigen-specific immunological tolerance in RA and could potentially meet this need.Methods and analysis We report here the design of the phase I/II, investigator-initiated, open-label, dose-escalation trial TOLERANT. In this study, we will evaluate the intranodal administration of tolDCs in patients with RA that are in remission under immunosuppressive therapy. The tolDCs in this trial are loaded with the heat shock protein 70-derived peptide mB29a, which is an effective surrogate autoantigen in animal models of arthritis. Within this study, three dose-escalation cohorts (two intranodal injections of 5×106, 10×106 and 15×106 tolDCs), each consisting of three patients, are evaluated to identify the highest safe dose (recommended dose), and an extension cohort of nine patients will be treated with the recommended dose. The (co-)primary endpoints of this study are safety and feasibility, which we assess by the number of AEs and the successful production of tolDCs. The secondary endpoints include the immunological effects of the treatment, which we assess with a variety of high-dimensional and antigen-specific immunological assays. Clinical effects are exploratory outcomes.Ethics and dissemination Ethical approval for this study has been obtained from the Netherlands Central Committee on Research Involving Human Subjects. The outcomes of the trial will be disseminated through publications in open-access, peer-reviewed scientific journals, scientific conferences and to patient associations.Trial registration numbers NCT05251870; 2019-003620-20 (EudraCT); NL71296.000.20 (CCMO register).

Introduction In the Netherlands, assisting in suicide is allowed for physicians and regulated by the Termination of Life on Request and Assisted Suicide (review procedures) Act. However, some people decide to end their lives outside the medical domain, without a physician’s help. Two approaches for such self-directed dying are voluntary stopping eating and drinking (VSED) and independently taking lethal medication attended by a confidant (ILMC). The frequency of deaths by either of these methods in the Netherlands was examined in 2007. Since then, there have been societal, political and healthcare developments which may have had an influence on the frequency of self-directed dying. The primary objective of this study is to estimate how many people in the Netherlands currently die by VSED or ILMC. Secondary objectives include providing insight in the characteristics and quality of dying of people who choose for self-directed dying.Methods and analysis This cross-sectional study consists of an online questionnaire study (January to February 2024) among a randomly drawn sample (n=37 500) from a representative panel of the Dutch adult population in which participants are asked about potential experiences of close relatives choosing for VSED or ILMC. A two-stage screening procedure will be used to determine whether the respondents’ experiences represent a death by VSED or ILMC. Additional interviews (n=40) will be held with questionnaire respondents indicating their willingness to participate (May to September 2024). Quantitative data will be analysed using SPSS software, and qualitative data will be thematically analysed using NVivo software.Ethics and dissemination The study obtained approval from the Medical Research Ethics Committee of the Erasmus Medical Center, under number MEC-2023-0689. Informed consent will be sought from study participants in line with General Data Protection Regulation legislation. Results of the study will be disseminated through publications in scientific journals and conference presentations.Trial registration number NCT06186791.

ObjectivesIn palliative care, it is important for family caregivers to spend time with and care for the patient, and to receive (in)formal support. These elements were compromised during the Covid-19-pandemic. This study investigates what family caregivers of non-Covid-19-patients in the palliative phase shared online during the first wave of the pandemic, and what their communicative intentions were with posting online.MethodsTo investigate what family caregivers shared online, a reflexive thematic analysis was performed on online newspaper articles and posts on Twitter, Facebook and online forums. To investigate family caregivers' communicative intentions with social media posts, content analysis was conducted guided by Speech Act Theory.ResultsIn total, 412 posts and articles were included, the majority being Tweets (86.7%). Four themes were constructed: 1) 'Being out of touch', 2) 'Fear, worries and uncertainties, 3) 'Disbelief, anger and resistance', and 4) 'Understanding, acceptance and gratitude'. Family caregivers felt overwhelmed with anger, sadness and anxiety, yet some expressing milder or positive attitudes towards the new circumstances. Family caregivers mostly posted online to share their personal experiences and emotions, and to express their opinions about the restrictions.ConclusionsThe pandemic had distinct implications for family caregivers of non-Covid-19-patients in the palliative phase. In future similar circumstances, restrictions should be tailored to individual conditions and interventions should be in place to facilitate contact between patients, family caregivers and healthcare professionals and to support family caregivers.

Background: Specialist palliative care teams (SPCTs) have significant benefits for patients with advanced disease or frailty, including improved quality of life, greater satisfaction with care, and less potentially inappropriate care at the end of life. Experienced SPCTs are recognised to have higher referral rates compared to novice teams. The aim of this study was to assess the development of hospital-wide integration of specialist palliative care (PC) and of SPCTs in Dutch hospitals between 2014 and 2020. Methods: Three cross-sectional surveys of SPCTs in Dutch hospitals were conducted in 2015, 2018 and 2021. Key members of the hospital SPCTs completed questionnaires about the preceding year that included items on hospital and PC program characteristics, hospital-wide integration of specialist PC, and SPCT characteristics (92 hospitals in 2015, 79 in 2018 and 74 in 2021). The analysis included hospitals with an operational SPCT, as determined by providing inpatient PC consultation services. Univariate analyses compared hospitals and SPCTs by year. Significance was determined by p-values < 0.05. Results: In 2014, 65% of participating hospitals provided inpatient PC consultations (n = 48). This increased to 92% in 2017 (n = 58) and 98% in 2020 (n = 48). Over the years, participating hospitals showed an increasing level of hospital-wide integration of specialist PC, such as an increased number of dedicated PC outpatient clinics (56% in 2020, compared with 47% in 2017 and 27% in 2014). The annual number of inpatient referrals to SPCTs has increased significantly over the years. The SPCTs have developed significantly in various aspects, including collaboration between primary and hospital care, the availability of services to patients at home and non-clinical activities. Conclusion: Over the years, Dutch hospitals have shown growth in hospital-wide integration of specialist PC. Specialist palliative care teams have made significant progress in increasing inpatient consultations, and in improving collaboration between primary and hospital care. [ABSTRACT FROM AUTHOR]

Abstract Background Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs’ service penetration, we explored the characteristics and level of integration of palliative care programmes and SPCTs in Dutch hospitals and we assessed the relation between these characteristics and specialist palliative care referral rates. Methods We performed a secondary analysis of a national cross-sectional survey conducted among hospitals in the Netherlands from March through May 2018. For this survey, a previously developed online questionnaire, containing 6 consensus-based integration indicators, was sent to palliative care programme leaders in all 78 hospitals. For referral rate we calculated the number of annual inpatient referrals to the SPCT as a percentage of the number of total annual hospital admissions. Referral rate was dichotomized into high (≥ third quartile) and low (< third quartile). Characteristics of SPCTs with high and low referral rate were compared using univariate analyses. P-values

Abstract Background In the Netherlands, healthcare professionals attending patients in the last phase of life, can consult an expert palliative care team (PCT) in case of complex problems. There are two types of PCTs: regional PCTs, which are mainly consulted by general practitioners, and hospital PCTs, which are mainly consulted by healthcare professionals in the hospital. Integration of these PCTs is expected to facilitate continuity of care for patients receiving care in different settings. We studied facilitators and barriers in the process of developing and implementing an integrated transmural palliative care consultation service. Methods A multiple case study was performed in four palliative care networks in the southwest Netherlands. We aimed to develop an integrated transmural palliative care consultation service. Researchers were closely observing the process and participated in project team meetings. A within-case analysis was conducted for each network, using the Consolidated Framework for Implementation Research (CFIR). Subsequently, all findings were pooled. Results In each network, project team members thought that the core goal of a transmural consultation service is improvement of continuity of palliative care for patients throughout their illness trajectory. It was nevertheless a challenge for hospital and non-hospital healthcare professionals to arrive at a shared view on goals, activities and working procedures of the transmural consultation service. All project teams experienced the lack of evidence-based guidance on how to organise the service as a barrier. The role of the management of the involved care organisations was sometimes perceived as unsupportive, and different financial reimbursement systems for hospital and out-of-hospital care made implementation of a transmural consultation service complex. Three networks managed to develop and implement a transmural service at some level, one network did not manage to do so. Conclusions Healthcare professionals are motivated to collaborate in a transmural palliative care consultation service, because they believe it can contribute to high-quality palliative care. However, they need more shared views on goals and activities of a transmural consultation service, more guidance on organisational issues and appropriate financing. Further research is needed to provide evidence on benefits and costs of different models of integrated transmural palliative care consultation services.

Objectives: In palliative care, it is important for family caregivers to spend time with and care for the patient, and to receive (in)formal support. These elements were compromised during the Covid-19-pandemic. This study investigates what family caregivers of non-Covid-19-patients in the palliative phase shared online during the first wave of the pandemic, and what their communicative intentions were with posting online. Methods: To investigate what family caregivers shared online, a reflexive thematic analysis was performed on online newspaper articles and posts on Twitter, Facebook and online forums. To investigate family caregivers' communicative intentions with social media posts, content analysis was conducted guided by Speech Act Theory. Results: In total, 412 posts and articles were included, the majority being Tweets (86.7%). Four themes were constructed: 1) 'Being out of touch', 2) 'Fear, worries and uncertainties, 3) 'Disbelief, anger and resistance', and 4) 'Understanding, acceptance and gratitude'. Family caregivers felt overwhelmed with anger, sadness and anxiety, yet some expressing milder or positive attitudes towards the new circumstances. Family caregivers mostly posted online to share their personal experiences and emotions, and to express their opinions about the restrictions. Conclusions: The pandemic had distinct implications for family caregivers of non-Covid-19-patients in the palliative phase. In future similar circumstances, restrictions should be tailored to individual conditions and interventions should be in place to facilitate contact between patients, family caregivers and healthcare professionals and to support family caregivers. [ABSTRACT FROM AUTHOR]

Autoimmune diseases affect many people worldwide. Current treatment modalities focus on the reduction of disease symptoms using anti-inflammatory drugs which can lead to side effects due to systemic immune suppression. Restoration of immune tolerance by down-regulating auto-reactive cells in an antigen-specific manner is currently the “holy grail” for the treatment of autoimmune diseases. A promising strategy is the use of nanoparticles that can deliver antigens to antigen-presenting cells which in turn can enhance antigen-specific regulatory T cells. In this review, we highlight some promising cell targets (e.g. liver sinusoidal endothelial cells and splenic marginal zone macrophages) for exploiting natural immune tolerance processes, and several strategies by which antigen-carrying nanoparticles can target these cells. We also discuss how nanoparticles carrying immunomodulators may be able to activate tolerance in other antigen-presenting cell types. Finally, we discuss some important aspects that must be taken into account when translating data from animal studies to patients.

[This corrects the article DOI: 10.1371/journal.pone.0201191.].

PURPOSE:Involvement of palliative care experts improves the quality of life and satisfaction with care of patients who are in the last stage of life. However, little is known about the relation between palliative care expert involvement and quality of dying (QOD) in the hospital. We studied the association between palliative care team (PCT) consultation and QOD in the hospital as experienced by relatives. METHODS:We conducted a secondary analysis of data from a prospective study among relatives of patients who died from cancer in a university hospital and compared characteristics and QOD of patients for whom the PCT was or was not consulted. RESULTS:175 out of 343 (51%) relatives responded to the questionnaire. In multivariable linear regression PCT was associated with a 1.0 point better QOD (95% CI 0.07-1.96). In most of the subdomains of QOD, we found a non-significant trend towards a more favorable outcome for patients for whom the PCT was consulted. Patients for whom the PCT was consulted had more often discussed their preferences for medical treatment, had more often been aware of their imminent death and had more often been at peace with their imminent death. Further, patients for whom the PCT was consulted and their relatives had more often been able to say goodbye. Relatives had also more often been present at the moment of death when a PCT had been consulted. CONCLUSION:For patients dying in the hospital, palliative care consultation is associated with a favorable QOD.

Background: Although support for family caregivers is an essential component of palliative care, routine provision of such support is often lacking. To improve support for family caregivers, we assessed current practice and influencing factors as perceived by healthcare professionals. Methods: A two-phase study was conducted including a survey exploring healthcare professionals' practice of supporting family caregivers in Western urbanized Netherlands in 2017, and focus groups exploring facilitators and barriers to supporting family caregivers in 2018. Focus group data were thematically analyzed with deductive coding based on the COM-B system. Results: Of the 379 survey respondents (response 11%), 374 were eligible (physicians, 28%; nurses, 64%; nurse assistants, 9%). The respondents practiced in academic hospitals (52%), general hospitals (31%), nursing homes (11%) and hospices (5%). They reported to always (38%), most of the time (37%), sometimes (21%) or never (5%) provide support to family caregivers during the illness trajectory. Respondents reported to always (28%), sometimes (39%), or never (33%) provide support after death. Four focus group discussions with 22 healthcare professionals elicited motivational facilitators and barriers to supporting family caregivers (e.g., relationship with family caregivers, deriving satisfaction from supporting them), and factors related to capability (e.g., (lacking) conversational skills, knowledge) and opportunity (e.g., (un)availability of protocols and time). Conclusions: Support for family caregivers, especially after the patient's death, is not systematically integrated in working procedures of healthcare professionals. The barriers and facilitators identified in this study can inform the development of an intervention aiming to enhance support for family caregivers. [ABSTRACT FROM AUTHOR]

The immune system plays a major role in protecting the host against viral infection. Rapid initial protection is conveyed by innate immune cells, while adaptive immunity (including T lymphocytes) requires several days to develop, yet provides high specificity and long-lasting memory. Invariant natural killer T (iNKT) cells are an unusual subset of T lymphocytes, expressing a semi-invariant T cell receptor together with markers of the innate NK cell lineage. Activated iNKT cells can exert direct cytolysis and can rapidly release a variety of immune-polarizing cytokines, thereby regulating the ensuing adaptive immune response. iNKT cells recognize lipids in the context of the antigen-presenting molecule CD1d. Intriguingly, CD1d-restricted iNKT cells appear to play a critical role in anti-viral defense: increased susceptibility to disseminated viral infections is observed both in patients with iNKT cell deficiency as well as in CD1d- and iNKT cell-deficient mice. Moreover, viruses have recently been found to use sophisticated strategies to withstand iNKT cell-mediated elimination. This review focuses on CD1d-restricted lipid presentation and the strategies viruses deploy to subvert this pathway.