Search

Objective The primary study aims were to evaluate the implementation, mechanisms and context of a timely short-term specialised palliative care intervention for older people with frailty (Frailty+ intervention) as well as to assess the feasibility of a randomised controlled trial to evaluate Frailty+. Our secondary aim was to describe any preliminary effects of Frailty+.Design Pilot randomised controlled trial with process evaluation.Setting/Participants We aimed to recruit 50 adults (≥70 years) with Clinical Frailty Scale score 5–7, and complex care needs and their main family carer, if available, from two Belgian hospitals on discharge.Interventions Patients were randomised to the Frailty+ intervention alongside standard care or standard care alone.Outcome measures Implementation and trial feasibility were assessed through interviews, focus groups and quantitative data. The primary outcome to be used in a potential full-scale trial if the study is feasible and implementable was mean change in five palliative care symptoms over 8 weeks.Results We enrolled 37 patients (19 intervention, 18 control) and 26 family carers (15 intervention, 11 control). Patients and family carers valued the home visits from palliative care nurses, and nurses saw value in Frailty+. But most patients received only one visit over 8 weeks, and nurses did not organise foreseen multidisciplinary meetings, referring to absence of urgent needs. Many aspects of the trial methods were feasible, but recruitment was challenging. The baseline mean score on the five palliative care symptoms was 6.0 and 5.6 in intervention and control group, respectively; and 4.5 and 4.1 at 8 weeks (adjusted ratio 1.0, ie, no effects on symptoms).Conclusions While Frailty+ was generally welcomed by older people with frailty, families and palliative care nurses, our process evaluation uncovered multiple barriers, mostly rooted in the current organisation of specialised palliative care that is tailored to advanced stages of illness. Ensuring timely access requires efforts beyond timely referral alone, and implies profound organisational and cultural change.Trial registration number ISRCTN39282347.

Background: Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological and existential well-being. Our understanding of these end-of-life trajectories is very limited, focuses predominantly on physical function and clinical predictors and neglects inter-individual differences. A better understanding of end-of-life trajectories, including what is shared among people and what is individually specific, is needed for an optimal provision of palliative care and health services planning. Objectives: TRAJECT is a European Research Council-funded interdisciplinary project with a central aim to gain understanding of what is generalisable and what is individually specific in older people’s end-of-life trajectories and in the circumstances that shape them. Design: Convergent mixed-methods design including a quantitative longitudinal survey study, a serial narrative study and a mortality follow-back survey. Methods and analysis: TRAJECT applies a novel methodological and analytical framework, examining trajectories through two distinct scientific lenses, both suited for uncovering variability as well as general principles: a structured quantitative approach to capture fluctuations in a standardised way, and an experience-focused qualitative approach to study the subjective stories and meanings behind changes in health. The findings of the quantitative and qualitative methods will be integrated through triangulation and by systematically threading key findings from one method across to the other. The research is conducted in Belgium. Discussion: This project will lead to a new understanding of the varied ways in which older people’s end-of-life trajectories unfold and which circumstances and experiences shape them. It will also reveal which elements of trajectories are shared across groups of people and which are individually specific. These new insights will provide a much-needed evidence base concerning groups at risk of poor well-being as they near death, which is needed to optimise palliative care practice, needs assessment, as well as health service planning.

BackgroundThe experience sampling method (ESM), a self-report method that typically uses multiple assessments per day, can provide detailed knowledge of the daily experiences of people with cancer, potentially informing oncological care. The use of the ESM among people with advanced cancer is limited, and no validated ESM questionnaires have been developed specifically for oncology. ObjectiveThis study aims to develop, content validate, and optimize the digital Experience Sampling Method for People Living With Advanced Cancer (ESM-AC) questionnaire, covering multidimensional domains and contextual factors. MethodsA 3-round mixed methods study was designed in accordance with the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) and the European Organization for Research and Treatment of Cancer guidelines. The study included semistructured interviews with 43 people with stage IV breast cancer or stage III to IV lung cancer and 8 health care professionals. Round 1 assessed the appropriateness, relative importance, relevance, and comprehensiveness of an initial set of ESM items that were developed based on the existing questionnaires. Round 2 tested the comprehensibility of ESM items. Round 3 tested the usability of the digital ESM-AC questionnaire using the m-Path app. Analyses included descriptive statistics and qualitative content analysis. ResultsFollowing the first round, we developed an initial core set of 68 items (to be used with all patients) and a supplementary set (optional; patients select items), both covering physical, psychological, social, spiritual-existential, and global well-being domains and concurrent contexts in which experiences occur. We categorized items to be assessed multiple times per day as momentary items (eg, “At this moment, I feel tired”), once a day in the morning as morning items (eg, “Last night, I slept well”), or once a day in the evening as evening items (eg, “Today, I felt hopeful”). We used participants’ evaluations to optimize the questionnaire items, the digital app, and its onboarding manual. This resulted in the ESM-AC questionnaire, which comprised a digital core questionnaire containing 31 momentary items, 2 morning items, and 7 evening items and a supplementary set containing 39 items. Participants largely rated the digital questionnaire as “easy to use,” with an average score of 4.5 (SD 0.5) on a scale from 1 (“completely disagree”) to 5 (“completely agree”). ConclusionsWe developed the ESM-AC questionnaire, a content-validated digital questionnaire for people with advanced breast or lung cancer. It showed good usability when administered on smartphone devices. Future research should evaluate the potential of this ESM tool to uncover daily experiences of people with advanced breast or lung cancer, explore its clinical utility, and extend its validation to other populations with advanced diseases.

Background: Navigation interventions could support, educate and empower older people with cancer and/or their family caregivers by addressing barriers and ensuring timely access to needed services and resources throughout the continuum of supportive, palliative and end-of-life care. Objectives: European Union (EU) NAVIGATE is an interdisciplinary and cross-country Horizon Europe-funded project (2022–2027) aiming to evaluate the effectiveness, cost-effectiveness and implementation of a navigation intervention for older people with cancer and their family caregivers in Europe. EU NAVIGATE aims to advance the evidence on cancer patient navigation in Europe. Design: Adaptation, implementation and evaluation of a navigation intervention with an international pragmatic randomized controlled trial (RCT) and embedded mixed-method process evaluation at its core. A logic model guides dissemination and impact-generating strategies. EU NAVIGATE involves six experienced EU academic partners; one EU national cancer league with their affiliated academic partner; three EU dissemination partners; and a Canadian partner. Methods: We adapted the Canadian Navigation: Connecting, Advocating, Resourcing, and Engaging (Nav-CARE © ) volunteer programme to healthcare contexts in Belgium, Ireland, Italy, the Netherlands, Poland and Portugal following the new ADAPT guidance. Nav-CARE was developed over the past 15 years and supports people with declining health and their families to improve their quality of life and well-being, foster empowerment and facilitate timely and equitable access to healthcare and social services. In EU NAVIGATE, the navigation intervention is being provided by trained and mentored social workers in Poland and by trained and mentored volunteers in the other five countries. Via a pragmatic RCT with process evaluation, we implement and evaluate the navigation intervention to study its impact on older people with cancer and their family caregivers. We also aim to understand its cost-effectiveness, how to optimally implement it in different countries, and its differential effects in patient subgroups. We will also map existing cancer navigation interventions in Europe, the United States and Canada to position EU NAVIGATE within the field of navigation interventions worldwide. Conclusion: EU NAVIGATE aims to deliver high-quality evidence on a navigation intervention for older people with cancer in Europe and to develop practice and policy recommendations for sustainable implementation of navigation interventions in Europe and beyond.

ObjectivesTo explore the timing of menarche, postmenarcheal growth, and to investigate the impact of various variables on menarcheal age and postmenarcheal and pubertal growth.Study DesignThis longitudinal community population-based study analyzed pubertal growth and menarcheal age in 793 healthy term-born Swedish girls, a subset of the GrowUp1990Gothenburg cohort. The timing of menarche and postmenarcheal growth was related to variables from the Quadratic-Exponential-Pubertal-Stop (QEPS) growth model, birth characteristics, and parental height. Multivariable models were constructed for clinical milestones; at birth, age 7 years, pubertal growth onset, and midpuberty.ResultsMenarche aligned with 71.6% (18.8) of the QEPS model's specific pubertal growth function, at a mean age of 13.0 (1.3) years, ranging from 8.2 to 17.2 years. Postmenarcheal growth averaged 8.0 (4.9) cm, varying widely from 0.2 to 31.1 cm, decreasing with later menarche. Significant factors associated with menarcheal age included height at 7 years, childhood body-mass index, parental height, and QEPS-derived pubertal growth variables. Multivariable models demonstrated increasing explanatory power for each milestone, explaining 1% of the variance in menarcheal age at birth, 8% at age 7 years, 44% at onset of pubertal growth, and 45% at midpuberty.ConclusionsThis study underscores the strong link between pubertal growth and age at menarche. Data available at start of puberty explain 44% of the variation in menarcheal age, apparent on average 3.2 years before menarche. In addition, the study shows a previously seldom noticed wide variation in postmenarcheal height gain from 0.2 to 31.1 cm.

BackgroundIntensive longitudinal methods offer a powerful tool for capturing daily experiences of individuals. However, its feasibility, effectiveness, and optimal methodological approaches for studying or monitoring experiences of oncology patients remain uncertain. ObjectiveThis scoping review aims to describe to what extent intensive longitudinal methods with daily electronic assessments have been used among patients with breast or lung cancer and with which methodologies, associated outcomes, and influencing factors. MethodsWe searched the electronic databases (PubMed, Embase, and PsycINFO) up to January 2024 and included studies reporting on the use of these methods among adults with breast or lung cancer. Data were extracted on population characteristics, intensive monitoring methodologies used, study findings, and factors influencing the implementation of these methods in research and clinical practice. ResultsWe identified 1311 articles and included 52 articles reporting on 41 studies. Study aims and intensive monitoring methodologies varied widely, but most studies focused on measuring physical and psychological symptom constructs, such as pain, anxiety, or depression. Compliance and attrition rates seemed acceptable for most studies, although complete methodological reporting was often lacking. Few studies specifically examined these methods among patients with advanced cancer. Factors influencing implementation were linked to both patient (eg, confidence with intensive monitoring system) and methodology (eg, option to use personal devices). ConclusionsIntensive longitudinal methods with daily electronic assessments hold promise to provide unique insights into the daily lives of patients with cancer. Intensive longitudinal methods may be feasible among people with breast or lung cancer. Our findings encourage further research to determine optimal conditions for intensive monitoring, specifically in more advanced disease stages.

Abstract Aims Compelling evidence from randomized trials has shown that sodium‐glucose cotransporter 2 inhibitors (SGLT2is) are effective in heart failure (HF) across the spectrum of left ventricular ejection fractions. However, there are very few studies with real‐world data. Methods and results A retrospective cohort analysis was performed based on patient‐level data from the Swedish Heart Failure Registry (SwedeHF) linked with three other national registers. Patients included had an index registration between 3 September 2013 and 31 December 2020 in SwedeHF and were on treatment with guideline‐recommended therapy without or with SGLT2i 3 months before or 6 months after their index registration. Endpoints were mortality or readmissions. Association between the use of SGLT2i and endpoints was studied using adjusted Cox models. In the overall cohort, 796/22 405 patients were included with/without SGLT2i. In patients with SGLT2i, 93.5% had diabetes mellitus. In the overall cohort, SGLT2i was statistically significantly associated with all‐cause mortality {hazard ratio [HR]: 0.61 [95% confidence interval (CI) 0.48–0.79], P

Abstract Background Advance care planning (ACP) is a process that enables individuals to define goals and preferences for their future care. It is particularly relevant for people with dementia and their family. Interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the ACP process. However, considering the specific needs of people with dementia, it is important to develop adapted tools for this population. This study was conducted to define the content of an interactive website for people with dementia and their family caregivers to support them in ACP and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals. Methods Online focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, using a semi-structured topic guide. To analyse the data, we used thematic framework analysis with a combination of deductive and inductive approaches to coding. Results We conducted 4 focus groups with family caregivers of people with dementia (n = 18) and 3 with healthcare professionals (n = 17). Regarding the content of the website, participants highlighted that information on ACP (what and why) and guidance on how to start talking about ACP throughout the dementia trajectory should be included on the website. To increase the usability of the website, most participants considered a text-to-speech and a print option as important functionalities. A lack of computer literacy was found to be the most significant barrier to finding and using the website. Conclusion A website for people with dementia and their family caregivers to support them in ACP should focus on comprehensive content on ACP, peer testimonials, and interactive communication tools. Moreover, there should be certain flexibility in navigating through the website so people with dementia and their family caregivers can use it at their own pace. As the next step, we will include people with dementia in developing the website.

Introduction People with advanced cancer can experience a wide range of multidimensional symptoms or concerns, but little is known about when and how these fluctuate in daily life. Experience sampling methods (ESMs) involve repeated self-reports in people’s natural contexts aimed at uncovering everyday life experiences. ESM has limited recall bias and good ecological validity but might be burdensome to patients. This study aims to pretest and evaluate the feasibility and clinical utility of a validated ESM and use it to explore everyday experiences of people living with advanced breast or lung cancer.Methods and analysis In step 1, we will optimise our ESM method by pretesting it through usability interviews and a pilot ESM study. In step 2, we will evaluate and use the ESM method through an observational ESM study to investigate the daily experiences of people with advanced breast or lung cancer. Step 2 also includes interviews with healthcare professionals to determine the clinical utility of ESM in oncology. Participants will complete a digital questionnaire ten times per day, measuring momentary experiences in the physical, psychological, social, spiritual-existential domains and context. Multilevel regression models will analyse fluctuations and temporal relations among measured experiences and context. Analyses also include evaluation of compliance and participation rates. We will apply content analysis to the usability interviews and follow-up interviews of the pilot ESM study.Ethics and dissemination We obtained approval from the ethics committees of the University Hospitals of Brussels (BUN: 1432023000043) and Ghent (ONZ-2023-0136). Results will be published in open-access, peer-reviewed journals and presented at conferences. If ESM appears feasible in this population, it could offer new insights into the daily experiences and help optimise support for people with advanced cancer.

Abstract Aim Heart failure (HF) is predominantly a disorder of the elderly. During the last decades, cardiovascular primary and secondary prevention and life expectancy have improved. Accordingly, trends in incidence and prevalence of HF are dynamic and may differ over time by age and gender. We aim to investigate the overall and age‐specific and sex‐specific trends, in incidence, prevalence, and the proportion with co‐morbidities of HF over a 10 year period in Region Västra Götaland, Sweden. Methods and results The VEGA database is an administrative database of all patients managed in hospital and/or in primary care (private and public) living in Region Västra Götaland. All patients with a main or contributory diagnosis of HF (I50) aged 18 years or older between 2008 and 2017 were included. Incidence and prevalence of HF were calculated based on the entire adult population of Region Västra Götaland. The adult population in Region Västra Götaland increased by 8% from 2008 (n = 1 234 609) to 2017 (n = 1 338 906). Half the population was female and 69% 75 years. A constantly higher incidence of HF was seen for men compared with women in all age categories, RR 1.46 (95% CI 1.44–1.49), P 85 years of age who had a prevalence of 16.5% (men) and 14.6% (women) in 2008 and 23.5% (men) and 21.5% (women) in 2017. The overall 1 year mortality rate was 22.7%. When adjusted for age, women had a lower risk for death by 13% compared with men [hazard ratio 0.87 (95% CI 0.84–0.90, P 85 years. Our findings emphasize the need for implementation of effective preventive strategies for HF.

Abstract Background Little is known about the nature and intensity of palliative care needs of hospitalised older people. We aimed to describe the palliative care symptoms, concerns, and well-being of older people with frailty and complex care needs upon discharge from hospital to home, and to examine the relationship between palliative care symptoms and concerns, and well-being. Methods Cross-sectional study using baseline survey data of a pilot randomised controlled trial. Hospital staff identified patients (≥ 70 years) about to be discharged home, with a clinical frailty score of 5 to 7 and complex needs based on physician-assessment. Patients completed structured interviews, using the Integrated Palliative Care Outcome Scale (IPOS), ICEpop CAPability measure for supportive care (ICECAP-SCM) and IPOS Views on Care quality of life item. We calculated descriptive statistics. Results We assessed 37 older people with complex needs (49% women, mean age 84, standard deviation 6.1). Symptoms rated as causing severe problems were weakness (46%) and poor mobility (40%); 75% reported that their family felt anxious at least occasionally. Of the 17 IPOS items, 41% of patients rated five or more symptoms as causing severe problems, while 14% reported that they were not severely affected by any symptom. 87% expressed feeling supported. There was a negative correlation between symptoms (IPOS) and well-being (ICECAP); r = -0.41. Conclusion We identified a large variety of symptoms experienced by older people identified as having frailty and complex needs upon hospital discharge. Many were severely affected by multiple needs. This population should be considered for palliative care follow-up at home.

Background Web-based tools (e.g., websites, apps) for people with dementia and their family caregivers may be useful in supporting advance care planning (ACP). Using a user-centred design approach, we developed an ACP website for people with dementia and their families. This protocol describes how we will test and evaluate the ACP website. Publishing a study protocol can guide others who want to evaluate web-based tools. Moreover, the data collection methods used in this study are very innovative since they aim to involve people living with dementia without overburdening them. Methods We will conduct an evaluation study of the ACP website in Flanders, Belgium, using a convergent parallel mixed methods pre-post-test design with continuous follow-up. Thirty eligible dyads of people with mild to moderate dementia (both early and late onset) and their family caregivers will use the website in their everyday life for 8 weeks. We will evaluate the usage, usability, acceptability, and feasibility of the website, as well as the experiences of users. Additionally, we evaluate the effects of using the website on ACP readiness, ACP knowledge, attitudes, perceived barriers to engage in ACP, self-efficacy and skills to engage in ACP Results Recruitment and data collection is foreseen between end of 2022 and 2023. Conclusion This evaluation study of an ACP website for people with dementia and their family caregivers will be the first to evaluate how a web-based tool can support people living with dementia and their families in ACP. The strength of this study lies in the combination of interviews, surveys, and ongoing data logging, which provide insights into the use of support tools in people's daily context. We expect that recruiting people with dementia and their families will be difficult so we have set up a thorough strategy to reach the anticipated sample size.

BackgroundGlioblastoma is the most common and most aggressive primary brain tumor in adults. Despite multimodal treatment, the median survival time is 15–16 months and 5-year survival rate 5%–10%. The primary goal of this study was to identify prognostic factors for survival in an unselected population of patients operated for glioblastoma. The secondary goal was to explore changes in outcome and the clinical management of this patient group over time.MethodsWe identified 222 consecutive adults operated for glioblastoma between November 2012 and June 2016 at the Department of Neurosurgery, Sahlgrenska University Hospital in Gothenburg, serving a health care region in the western part of Sweden with 1.900.000 inhabitants. Clinical variables were identified and tested as predictors for prognosis in extended Poisson regression models. The results were compared with a previously published cohort from 2004 to 2008, before current standard of care based on molecular tumor diagnosis was fully implemented.ResultsMedian overall survival was 1.07 years, which was significantly longer than in the 2004–2008 cohort (1.07 vs. 0.73 y, age- and sex adjusted HR = 1.89, p

Introduction Liver resection carries a high risk for extensive bleeding and need for blood transfusions, which is associated with significant negative impact on outcome. In malignant disease, the most common indication for surgery, it also includes increased risk for recurrence of cancer. Argipressin decreases liver and portal blood flow and may have the potential to reduce bleeding during liver surgery, although this has not been explored.Method and analysis ARG-01 is a prospective, randomised, placebo-controlled, double-blinded study on 248 patients undergoing liver resection at Sahlgrenska University Hospital, Sweden. Patients will be randomised to one of two parallel groups, infusion of argipressin or normal saline administered peroperatively. The primary endpoint is peroperative blood loss. Secondary outcomes include need for blood transfusion, perioperative variables, length of hospital stay, the inflammatory response, organ damage markers and complications at 30 days.Ethics and dissemination The study is enrolling patients since March 2022. The trial is approved by the Swedish Ethical Review Authority (Dnr 2021-03557) and the Swedish Medical Product Agency (Dnr 5.1-2021-90115). Results will be announced at scientific meetings and in international peer-reviewed journals.Trial registration number ClinicalTrials.gov, NCT05293041 and EudraCT, 2021-001806-32

BackgroundWeb-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families. ObjectiveThis paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families. MethodsThe development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire. ResultsThis study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023. ConclusionsThe methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study. International Registered Report Identifier (IRRID)DERR1-10.2196/46935

Background: Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited. Aims: To introduce experience sampling methods to the field of palliative care as a valuable tool for studying the everyday experiences of people with advanced illness, and to present the findings of an experience sampling methods pilot study with people with advanced breast or advanced lung cancer. Evidence used to support the information presented: We draw on published health research using experience sampling methods. We present a newly developed experience sampling methods questionnaire (ESM-AC) and report pilot study findings on the feasibility and acceptability of experience sampling methods among people with advanced breast or lung cancer. Key learning points: Experience sampling methods hold potential to uncover the dynamics of everyday experiences of people with advanced illness. The methods offer considerable flexibility and options to answer a variety of research questions, but consideration is required regarding sampling protocols and participant burden. We showed appropriate feasibility and acceptable participant burden of the methods among people with advanced breast or advanced lung cancer. [ABSTRACT FROM AUTHOR]

Background: We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff's self-efficacy, it did not change their knowledge about advance care planning. Aim: To describe the level of implementation, mechanisms of impact, and contextual factors. Design: Process evaluation embedded in a cluster randomized controlled trial in nursing homes (NCT03521206). Throughout and immediately following the 8-month ACP+ implementation, we collected weekly diaries, post-training surveys, attendance records, facility data, and conducted interviews (n = 32). We applied descriptive statistics and thematic analysis. Setting and participants: Management, staff, and ACP+ trainers in seven intervention homes. Results: Although most participants reported they valued ACP+, 33% of eligible staff across nursing homes attended training (range: 6%–69%) and only a few reported they felt ready to engage in actual care planning conversations. Half of all nursing homes adapted parts of the intervention (e.g., more/fewer/shortened training; assigning a coordinating role for practical management). Enough time to consolidate skills, and management support were key for staff engagement in advance care planning, and limited time and staff shortages were significant barriers. Staff reported increased awareness of the importance of advance care planning and felt there was a more systematic way of organizing advance care planning. Conclusions: There was limited staff engagement. Management ownership, clear roles, and collaborative practices may enhance nursing home advance care planning. Accessible and ongoing training for all staff, and ample practical learning opportunities are needed. [ABSTRACT FROM AUTHOR]

Background: Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological and existential well-being. Our understanding of these end-of-life trajectories is very limited, focuses predominantly on physical function and clinical predictors and neglects inter-individual differences. A better understanding of end-of-life trajectories, including what is shared among people and what is individually specific, is needed for an optimal provision of palliative care and health services planning. Objectives: TRAJECT is a European Research Council-funded interdisciplinary project with a central aim to gain understanding of what is generalisable and what is individually specific in older people's end-of-life trajectories and in the circumstances that shape them. Design: Convergent mixed-methods design including a quantitative longitudinal survey study, a serial narrative study and a mortality follow-back survey. Methods and analysis: TRAJECT applies a novel methodological and analytical framework, examining trajectories through two distinct scientific lenses, both suited for uncovering variability as well as general principles: a structured quantitative approach to capture fluctuations in a standardised way, and an experience-focused qualitative approach to study the subjective stories and meanings behind changes in health. The findings of the quantitative and qualitative methods will be integrated through triangulation and by systematically threading key findings from one method across to the other. The research is conducted in Belgium. Discussion: This project will lead to a new understanding of the varied ways in which older people's end-of-life trajectories unfold and which circumstances and experiences shape them. It will also reveal which elements of trajectories are shared across groups of people and which are individually specific. These new insights will provide a much-needed evidence base concerning groups at risk of poor well-being as they near death, which is needed to optimise palliative care practice, needs assessment, as well as health service planning. [ABSTRACT FROM AUTHOR]

Context Neurodevelopmental impairments are common among survivors of extremely preterm birth, particularly in males. Hyperactivation of the hypothalamic–pituitary–gonadal (HPG) axis has been suggested as an underlying cause, but this has been poorly investigated. Objective Establish levels and temporal changes in circulating androgens in extremely preterm infant males. Methods Observational cohort study analyzing cord blood serum (n = 25) and postnatal plasma (n = 13) collected from day 0 until week 11 from infant males born at 22.8-27.9 weeks gestational age. Testosterone and dihydrotestosterone (DHT) were determined using gas chromatography mass spectrometry, sex hormone–binding globulin (SHBG) with an enzyme-linked immunosorbent assay, and follicle-stimulating hormone (FSH) and luteinizing hormone (LH) with the Luminex xMAP multiplex assay. Results Testosterone and DHT levels were higher on day 0 (median 4.27 and 0.30 ng/mL) than in cord blood (0.15 and 0.01 ng/mL) (P <.001 for both). Levels of the hormones then declined rapidly until day 5 (median 0.16 and 0.12 ng/mL), then remained relatively constant throughout the study period. Median levels of testosterone and DHT across the whole study period were approximately 6-fold higher than reported in utero levels. FSH and LH showed similar postnatal patterns as the androgens. SHBG steadily increased over time, and, as a result, the fraction of bioavailable testosterone declined with infant postnatal age. Conclusion The HPG axis is activated immediately after birth in extremely preterm infant males, resulting in an androgen pulse occurring several months earlier than during a normal pregnancy. The long-term implications of high androgen exposure during a sensitive neurodevelopmental period warrant further studies. [ABSTRACT FROM AUTHOR]

Abstract Aims This study aimed to evaluate the outcome and prognostic factors in patients with dilated cardiomyopathy (DCM) and long‐standing heart failure (LDCM) vs. recent‐onset heart failure (RODCM). Methods and results We compared 2019 patients with RODCM (duration

Objective The current grading of retinopathy of prematurity (ROP) does not sufficiently discriminate disease severity for evaluation of trial interventions. The published ROP Activity Scales (original: ROP-ActS and modified: mROP-ActS), describing increasing severity of ROP, versus the categorical variables severe ROP, stage, zone and plus disease were evaluated as discriminators of the effect of an ROP preventive treatment.Methods and analysis The Mega Donna Mega trial investigated ROP in infants born

Abstract Aims To study clinical phenotype, prognosis for all‐cause and cardiovascular (CV) mortality and predictive factors in patients with incident heart failure (HF) after aortic valvular intervention (AVI) for aortic stenosis (AS). Methods and results In this retrospective, observational study we included patients from the Swedish Heart Failure Registry (SwedeHF) recorded 2003–2016, with AS diagnosis and AVI before HF diagnosis. The AS diagnosis was established according to International Classification of Diseases 10th revision (ICD‐10) codes, thus without information concerning clinical or echocardiographical data on the aortic valve disease. The patients were divided into two subgroups: left ventricular ejection fraction (LVEF) ≥ 50% (AS‐HFpEF) and

Abstract Background Temporal trends in clinical composition and outcome in dilated cardiomyopathy (DCM) are largely unknown, despite considerable advances in heart failure management. We set out to study clinical characteristics and prognosis over time in DCM in Sweden during 2003–2015. Methods DCM patients (n = 7873) from the Swedish Heart Failure Registry were divided into three calendar periods of inclusion, 2003–2007 (Period 1, n = 2029), 2008–2011 (Period 2, n = 3363), 2012–2015 (Period 3, n = 2481). The primary outcome was the composite of all-cause death, transplantation and hospitalization during 1 year after inclusion into the registry. Results Over the three calendar periods patients were older (p = 0.022), the proportion of females increased (mean 22.5%, 26.4%, 27.6%, p = 0.0001), left ventricular ejection fraction was higher (p = 0.0014), and symptoms by New York Heart Association less severe (p