PET-CT-guided versus CT-guided biopsy in suspected malignant pleural thickening: a randomised trial.

BACKGROUND: Pleural biopsy is the gold standard for diagnosis of pleural malignancy but a significant proportion will have an inconclusive biopsy despite ongoing clinical suspicion of malignancy. We investigated whether positron emission tomography-computed tomography (PET-CT) targeted pleural biopsy is superior to standard CT-guided pleural biopsy following an initial non-diagnostic biopsy. METHODS: The TARGET trial was a multicentre, parallel group randomised trial. Patients with a previous inconclusive pleural biopsy but an ongoing suspicion of pleural malignancy were randomised (1:1) to receive either CT-guided biopsy (standard care) or PET-CT followed by a targeted CT biopsy (intervention). The primary outcome was pleural malignancy correctly identified from the trial biopsy. RESULTS: Between September 2015 and September 2018, 59 participants were randomised from eight UK hospital sites: 29 to CT-only followed by targeted biopsy and 30 to PET-CT followed by targeted biopsy. The proportion of pleural malignancy correctly identified was similar between the groups (risk ratio 1.03 (95% CI 0.83-1.29); p=0.77). The sensitivity of the trial biopsy to identify pleural malignancy was 79% (95% CI 54-94%) in the CT-only group versus 81% (95% CI 54-96%) in the PET-CT group. CONCLUSIONS: The results do not support the practice of PET-CT to guide pleural biopsies in patients with a previous non-diagnostic biopsy. The diagnostic sensitivity in the CT-only group was higher than anticipated and supports the practice of repeating a CT-guided biopsy following an inconclusive result if clinical suspicion of malignancy persists.

Mutational landscape, inhibitor development, and health-care burden in non-severe haemophilia A: A single-centre Australian experience.

AIM: To characterise non-severe haemophilia A (HA) patients enrolled on the Australian Bleeding Disorders Registry (ABDR) treated through a state-wide Haemophilia Treatment Centre (HTC) with respect to their mutational profile, inhibitor risk and health-care burden. METHOD: We conducted a single-centre observational study of all non-severe HA patients treated at the Alfred Health HTC registered on the ABDR as of the 26th July 2023. Data were extracted from the ABDR and electronic medical record (EMR) regarding demographics, severity, genetic testing, treatment, inhibitors, bleeding events and procedures. Inhibitor risk was calculated as a function of exposure days (EDs) of FVIII replacement. RESULTS: There were 289 non-severe HA patients treated at the Alfred HTC registered on the ABDR as of July 2023, all of whom were adult patients aged > 18 years old. Genotyping had been performed in 228/289 (78.9%). Of the inhibitor analysis population, 14/193 (7.3%) had an inhibitor. The cumulative incidence of inhibitor development at 75 EDs was 31% (95% CI 13%-46%). The median cost of bypassing agents per inhibitor patient was $57,087.50/year. CONCLUSION: These results demonstrate a relatively high inhibitor prevalence and incidence risk in non-severe HA compared to previously published work, although this may partly reflect a smaller population size. High rates of genotyping have allowed representative mutational characterisation. The burden of care imposed by non-severe HA in terms of bleeding events, procedures and bypassing agent cost is larger than expected, particularly within the inhibitor population.

Gender, diversity, and the responsible assessment of researchers.

In response to the Hong Kong Principles for assessing researchers, this Formal Comment argues that it is time to take gender and diversity considerations seriously in the pursuit of fostering research integrity; this requires acknowledging and reshaping the influence of research assessment criteria on researcher representation.

Curious? The relationship between curiosity and creativity is likely NOT novelty.

The target article tackles an important and complicated issue of the underlying links between curiosity and creativity. Although thought-provoking, the target article overlooks contemporary theories and research on these constructs. Consequently, the proposed model is inconsistent with prior research in the developmental and educational fields and would benefit from better specification and clarity around key constructs and processes.

Optimal Dose of Intranasal Dexmedetomidine for Laceration Repair in Children: A Phase II Dose-Ranging Study.

STUDY OBJECTIVE: To determine the optimal sedative dose of intranasal dexmedetomidine for children undergoing laceration repair. METHODS: This dose-ranging study employing the Bayesian Continual Reassessment Method enrolled children aged 0 to 10 years with a single laceration (<5 cm), requiring single-layer closure, who received topical anesthetic. Children were administered 1, 2, 3, or 4 mcg/kg intranasal dexmedetomidine. The primary outcome was the proportion with adequate sedation (Pediatric Sedation State Scale score of 2 or 3 for ≥90% of the time from sterile preparation to tying of the last suture). Secondary outcomes included the Observational Scale of Behavior Distress-Revised (range: 0 [no distress] to 23.5 [maximal distress]), postprocedure length of stay, and adverse events. RESULTS: We enrolled 55 children (35/55 [64%] males; median [interquartile range {IQR}] age 4 [2, 6] years). At 1, 2, 3, and 4 mcg/kg intranasal dexmedetomidine, respectively, the proportion of participants "adequately" sedated was 1/3 (33%), 2/9 (22%), 13/21 (62%), and 12/21 (57%); the posterior mean (95% equitailed credible intervals) for the probability of adequate sedation was 0.38 (0.04, 0.82), 0.25 (0.05, 0.54), 0.61 (0.41, 0.80), and 0.57 (0.36, 0.76); the median (IQR) Observational Scale of Behavior Distress-Revised scores during suturing was 2.7 (0.3, 3), 0 (0, 3.8), 0.6 (0, 5), and 0 (0, 3.7); the median (IQR) postprocedure length of stay was 67 (60, 78), 76 (60, 100), 89 (76, 109), and 113 (76, 150) minutes. There was 1 adverse event, a decrease in oxygen saturation at 4 mcg/kg, which resolved with head repositioning. CONCLUSION: Despite limitations, such as our limited sample size and subjectivity in Pediatric Sedation State Scale scoring, sedation efficacy for 3 and 4 mcg/kg were similarly based on equitailed credible intervals suggesting either could be considered optimal.

The Contribution of Moral Case Deliberation to Teaching RCR to PhD Students.

Teaching responsible conduct of research (RCR) to PhD students is crucial for fostering responsible research practice. In this paper, we show how the use of Moral Case Deliberation-a case reflection method used in the Amsterdam UMC RCR PhD course-is particularity valuable to address three goals of RCR education: (1) making students aware of, and internalize, RCR principles and values, (2) supporting reflection on good conduct in personal daily practice, and (3) developing students' dialogical attitude and skills so that they can deliberate on RCR issues when they arise. What makes this method relevant for RCR education is the focus on values and personal motivations, the structured reflection on real experiences and dilemmas and the cultivation of participants' dialogical skills. During these structured conversations, students reflect on the personal motives that drive them to adhere to the principles of good science, thereby building connections between those principles and their personal values and motives. Moreover, by exploring personal questions and dilemmas related to RCR, they learn how to address these with colleagues and supervisors. The reflection on personal experiences with RCR issues and questions combined with the study of relevant normative frameworks, support students to act responsibly and to pursue RCR in their day-to-day research practice in spite of difficulties and external constraints.

What do Retraction Notices Reveal About Institutional Investigations into Allegations Underlying Retractions?

Academic journal publications may be retracted following institutional investigations that confirm allegations of research misconduct. Retraction notices can provide insight into the role institutional investigations play in the decision to retract a publication. Through a content analysis of 7,318 retraction notices published between 1927 and 2019 and indexed by the Web of Science, we found that most retraction notices (73.7%) provided no information about institutional investigations that may have led to retractions. A minority of the retraction notices (26.3%) mentioned an institutional investigation either by journal authorities (12.1%), research performing organizations (10.3%), joint institutions (1.9%), research integrity and ethics governing bodies (1.0%), third-party institutions (0.5%), unspecified institutions (0.4%), or research funding organizations (0.1%). Comparing retraction notices issued before and after the introduction of retraction guidelines by the Committee on Publication Ethics (COPE) in 2009 revealed that those published after the guidelines' publication were more likely to report investigations by journal authorities. Comparing retraction notices from different disciplines revealed that those from social sciences and the humanities were more likely to disclose investigations by research performing organizations than those from biomedical and natural sciences. Based on these findings, we suggest that the COPE retraction guidelines in the future make it mandatory to disclose in retraction notices institutional investigations leading to retractions.

Co-creating Research Integrity Education Guidelines for Research Institutions.

To foster research integrity (RI), research institutions should develop a continuous RI education approach, addressing various target groups. To support institutions to achieve this, we developed RI education guidelines together with RI experts and research administrators, exploring similarities and differences in recommendations across target groups, as well as recommendations about RI education using approaches other than formal RI training. We used an iterative co-creative process. We conducted four half-day online co-creation workshops with 16 participants in total, which were informed by the RI education evidence-base. In the first two workshops, participants generated ideas for guidelines' content, focusing on different target groups and various approaches to RI education. Based on this content we developed first drafts of the guidelines. Participants in the third and fourth workshop refined those drafts. We next organized a working group which further prioritized, reorganized, and optimized the content of the guidelines. We developed four guidelines on RI education focusing on (a) bachelor, master and PhD students; (b) post-doctorate and senior researchers; (c) other RI stakeholders; as well as (d) continuous RI education. Across guidelines, we recommend mandatory RI training; follow-up refresher training; informal discussions about RI; appropriate rewards and incentives for active participation in RI education; and evaluation of RI educational events. Our work provides experience-based co-created guidance to research institutions on what to consider when developing a successful RI education strategy. Each guideline is offered as a distinct, publicly available tool in our toolbox ( www.sops4ri.eu/toolbox ) which institutions can access, adapt and implement to meet their institution-specific RI education needs.Trial registration https://osf.io/zej5b .

Establishing irremediable psychiatric suffering in the context of medical assistance in dying in the Netherlands: a qualitative study.

BACKGROUND: Establishing irremediability of suffering is a central challenge in determining the appropriateness of medical assistance in dying (MAiD) for patients with a psychiatric disorder. We sought to evaluate how experienced psychiatrists define irremediable psychiatric suffering in the context of MAiD and what challenges they face while establishing irremediable psychiatric suffering. METHODS: We conducted a qualitative study of psychiatrists in the Netherlands with experience assessing irremediable psychiatric suffering in the context of MAiD. We collected data from in-depth, semistructured interviews focused on the definition of irremediable psychiatric suffering and on the challenges in establishing irremediability. We analyzed themes using a modified grounded theory approach. RESULTS: The study included 11 psychiatrists. Although irremediable psychiatric suffering is a prospective concept, most participants relied on retrospective dimensions to define it, such as a history of failed treatments, and expressed that uncertainty was inevitable in this process. When establishing irremediable psychiatric suffering, participants identified challenges related to diagnosis and treatment. The main diagnostic challenge identified was the frequent co-occurrence of more than 1 psychiatric diagnosis. Important challenges related to treatment included assessing the quality of past treatments, establishing when limits of treatment had been reached and managing "treatment fatigue." INTERPRETATION: Challenges regarding the definition, diagnosis and treatment of irremediable psychiatric suffering complicate the process of establishing it in the context of MAiD. Development of consensus clinical criteria for irremediable psychiatric suffering in this context and further research to understand "treatment fatigue" among patients with psychiatric disorders may help address these challenges. Registration: This study was preregistered under osf.io/2jrnd.

Manifestations of circulatory assist devices in noninvasive arterial duplex evaluation: A pictorial review.

Spectral Doppler and plethysmographic waveforms vary significantly in the presence of circulatory assist devices. Understanding the effect these devices have on the waveforms and flow characteristics is necessary for the appropriate interpretation of duplex ultrasound and other noninvasive vascular studies. We review the different arterial waveforms that can be seen with circulatory assist devices.

Irremediable Psychiatric Suffering in The Context of Medical Assistance in Dying: A Delphi-Study.

OBJECTIVE: Patients with a psychiatric disorder are eligible to request medical assistance in dying (MAID) in a small but growing number of jurisdictions, including the Netherlands and Belgium. In Canada, MAID for mental illness will become possible in 2023. For this request to be granted, most of these jurisdictions demand that the patient is competent in her request, and that the suffering experienced is unbearable and irremediable. Especially the criterion of irremediability is challenging to establish in patients with psychiatric disorders. The aim of this research is to establish what criteria Dutch and Belgian experts agree to be necessary in characterising irremediable psychiatric suffering (IPS) in the context of MAID. METHODS: A two-round Delphi procedure among psychiatrists with relevant experience. RESULTS: Thirteen consensus criteria were established: five diagnostic and eight treatment-related criteria. Diagnostically, the participants deem a narrative description and attention to contextual and systemic factors necessary. Also, a mandatory second opinion is required. The criteria concerning treatment show that extensive biopsychosocial treatment is needed, and the suffering must be present for several years. Finally, in the case of refusal, the participants agree that there are limits to the number of diagnostic procedures or treatments a patient must undergo. CONCLUSIONS: Consensus was found among a Dutch and Belgian expert group on potential criteria for establishing IPS in the context of MAID. These criteria can be used in clinical decision-making and can inform future procedural demands and research.

Moral values of Dutch physicians in relation to requests for euthanasia: a qualitative study.

BACKGROUND: In the Netherlands, patients have the legal right to make a request for euthanasia to their physician. However, it is not clear what it means in a moral sense for a physician to receive a request for euthanasia. The aim of this study is to explore the moral values of physicians regarding requests for euthanasia. METHODS: Semi-structured interviews were conducted with nine primary healthcare physicians involved in decision-making about euthanasia. The data were inductively analyzed which lead to the emergence of themes, one of which was about values regarding end-of-life decisions. RESULTS: Four clusters of values related to euthanasia requests are described: values related to 1) the patient; 2) the family; 3) the physician; and 4) life and death. The data show that the participants value patient autonomy as a necessary but not sufficient condition for meeting a euthanasia request. A good relationship with the patient and the family are important. For the physician, the values physician autonomy, responsibility, understanding the patient and relief of suffering play a role. Life as an intrinsic good and a peaceful death are also important values. CONCLUSION: This study shows that next to patient autonomy and the relationship with the patient and the family, it is important for the participants to act in accordance with their professional values and to do justice to values related to life and death. The awareness of going against the intrinsic value of life is crucial, even if performing euthanasia may result in a feeling of relief or gratitude afterwards.

Stakeholders' Experiences of Research Integrity Support in Universities: A Qualitative Study in Three European Countries.

Fostering research integrity (RI) increasingly focuses on normative guidance and supportive measures within institutions. To be successful, the implementation of support should be informed by stakeholders' experiences of RI support. This study aims to explore experiences of RI support in Dutch, Spanish and Croatian universities. In total, 59 stakeholders (Netherlands n = 25, Spain n = 17, Croatia n = 17) participated in 16 focus groups in three European countries. Global themes on RI support experiences were identified by thematic analysis. Themes identified were: 'RI governance and institutional implementation', 'RI roles and structures', 'RI education and supervision', and 'Infrastructure, technology and tools supporting daily practice'. Experiences of support differed between countries in relation to: the efforts to translate norms into practice; the extent to which RI oversight was a responsibility of RE structures, or separate RI structures; and the availability of support close to research practice, such as training, responsible supervision, and adequate tools and infrastructure. The study reinforces the importance of a whole institutional approach to RI, embedded within local jurisdictions, rules, and practices. A whole institutional approach puts the emphasis of responsibility on institutions rather than individual researchers. When such an approach is lacking, some stakeholders look for intervention by authorities, such as funders, outside of the university.

Call to Action to Prevent Venous Thromboembolism in Hospitalized Patients: A Policy Statement From the American Heart Association.

Venous thromboembolism (VTE) is a major preventable disease that affects hospitalized inpatients. Risk stratification and prophylactic measures have good evidence supporting their use, but multiple reasons exist that prevent full adoption, compliance, and efficacy that may underlie the persistence of VTE over the past several decades. This policy statement provides a focused review of VTE, risk scoring systems, prophylaxis, and tracking methods. From this summary, 5 major areas of policy guidance are presented that the American Heart Association believes will lead to better implementation, tracking, and prevention of VTE events. They include performing VTE risk assessment and reporting the level of VTE risk in all hospitalized patients, integrating preventable VTE as a benchmark for hospital comparison and pay-for-performance programs, supporting appropriations to improve public awareness of VTE, tracking VTE nationwide with the use of standardized definitions, and developing a centralized data steward for data tracking on VTE risk assessment, prophylaxis, and rates.

Outpatient Talc Administration by Indwelling Pleural Catheter for Malignant Effusion.

BACKGROUND: Malignant pleural effusion affects more than 750,000 persons each year across Europe and the United States. Pleurodesis with the administration of talc in hospitalized patients is the most common treatment, but indwelling pleural catheters placed for drainage offer an ambulatory alternative. We examined whether talc administered through an indwelling pleural catheter was more effective at inducing pleurodesis than the use of an indwelling pleural catheter alone. METHODS: Over a period of 4 years, we recruited patients with malignant pleural effusion at 18 centers in the United Kingdom. After the insertion of an indwelling pleural catheter, patients underwent drainage regularly on an outpatient basis. If there was no evidence of substantial lung entrapment (nonexpandable lung, in which lung expansion and pleural apposition are not possible because of visceral fibrosis or bronchial obstruction) at 10 days, patients were randomly assigned to receive either 4 g of talc slurry or placebo through the indwelling pleural catheter on an outpatient basis. Talc or placebo was administered on a single-blind basis. Follow-up lasted for 70 days. The primary outcome was successful pleurodesis at day 35 after randomization. RESULTS: The target of 154 patients undergoing randomization was reached after 584 patients were approached. At day 35, a total of 30 of 69 patients (43%) in the talc group had successful pleurodesis, as compared with 16 of 70 (23%) in the placebo group (hazard ratio, 2.20; 95% confidence interval, 1.23 to 3.92; P=0.008). No significant between-group differences in effusion size and complexity, number of inpatient days, mortality, or number of adverse events were identified. No significant excess of blockages of the indwelling pleural catheter was noted in the talc group. CONCLUSIONS: Among patients without substantial lung entrapment, the outpatient administration of talc through an indwelling pleural catheter for the treatment of malignant pleural effusion resulted in a significantly higher chance of pleurodesis at 35 days than an indwelling catheter alone, with no deleterious effects. (Funded by Becton Dickinson; EudraCT number, 2012-000599-40 .).

Pleural Fluid suPAR Levels Predict the Need for Invasive Management in Parapneumonic Effusions.

Rationale: Parapneumonic effusions have a wide clinical spectrum. The majority settle with conservative management but some progress to complex collections requiring intervention. For decades, physicians have relied on pleural fluid pH to determine the need for chest tube drainage despite a lack of prospective validation and no ability to predict the requirement for fibrinolytics or thoracic surgery.Objectives: To study the ability of suPAR (soluble urokinase plasminogen activator receptor), a potential biomarker of pleural fluid loculation, to predict the need for invasive management compared with conventional fluid biomarkers (pH, glucose, and lactate dehydrogenase) in parapneumonic effusions.Methods: Patients presenting with pleural effusions were prospectively recruited to an observational study with biological samples stored at presentation. Pleural fluid and serum suPAR levels were measured using the suPARnostic double-monoclonal antibody sandwich ELISA on 93 patients with parapneumonic effusions and 47 control subjects (benign and malignant effusions).Measurements and Main Results: Pleural suPAR levels were significantly higher in effusions that were loculated versus nonloculated parapneumonic effusions (median, 132 ng/ml vs. 22 ng/ml; P < 0.001). Pleural suPAR could more accurately predict the subsequent insertion of a chest tube with an area under the curve (AUC) of 0.93 (95% confidence interval, 0.89-0.98) compared with pleural pH (AUC 0.82; 95% confidence interval, 0.73-0.90). suPAR was superior to the combination of conventional pleural biomarkers (pH, glucose, and lactate dehydrogenase) when predicting the referral for intrapleural fibrinolysis or thoracic surgery (AUC 0.92 vs. 0.76).Conclusions: Raised pleural suPAR was predictive of patients receiving more invasive management of parapneumonic effusions and added value to conventional biomarkers. These results need validation in a prospective multicenter trial.

Examining the impact of children's exploration behaviors on creativity.

Creativity is typically measured using divergent thinking tasks where participants are asked to generate multiple responses following a prompt. However, being able to generate responses captures only a partial picture of creativity. Convergent thinking, in which a single solution is chosen, is an equally important part of creativity that is often left out of divergent thinking assessments. Moreover, as the field of creativity evolves, exploration is starting to be recognized as an understudied component of how children generate and apply creative solutions. The current study moved beyond typical divergent thinking tasks and examined a measure of creativity that also captured 4- to 6-year-old children's convergent thinking and exploration behaviors. A total of 130 children participated in a creative problem-solving task where they were asked to remove a ball from a jar using everyday objects. Children's actions were coded as divergent thinking, convergent thinking, or exploration behaviors. Results demonstrated that divergent and convergent thinking performance was not associated with success on the task, indicating that simply generating and selecting more responses is not always enough to achieve a creative outcome. Children's exploration behaviors were positively associated with success on the task. Exploration behaviors were more likely to lead to success if they were purposeful and iterative. These findings provide some of the first evidence that children's exploration is a vital component of creativity.

Important Topics for Fostering Research Integrity by Research Performing and Research Funding Organizations: A Delphi Consensus Study.

To foster research integrity (RI), it is necessary to address the institutional and system-of-science factors that influence researchers' behavior. Consequently, research performing and research funding organizations (RPOs and RFOs) could develop comprehensive RI policies outlining the concrete steps they will take to foster RI. So far, there is no consensus on which topics are important to address in RI policies. Therefore, we conducted a three round Delphi survey study to explore which RI topics to address in institutional RI policies by seeking consensus from research policy experts and institutional leaders. A total of 68 RPO and 52 RFO experts, representing different disciplines, countries and genders, completed one, two or all rounds of the study. There was consensus among the experts on the importance of 12 RI topics for RPOs and 11 for RFOs. The topics that ranked highest for RPOs concerned education and training, supervision and mentoring, dealing with RI breaches, and supporting a responsible research process (e.g. through quality assurance). The highest ranked RFO topics concerned dealing with breaches of RI, conflicts of interest, and setting expectations on RPOs (e.g. about educating researchers about RI). Together with the research policy experts and institutional leaders, we developed a comprehensive overview of topics important for inclusion in the RI policies of RPOs and RFOs. The topics reflect preference for a preventative approach to RI, coupled with procedures for dealing with RI breaches. RPOs and RFOs should address each of these topics in order to support researchers in conducting responsible research.

Effect of Thoracoscopic Talc Poudrage vs Talc Slurry via Chest Tube on Pleurodesis Failure Rate Among Patients With Malignant Pleural Effusions: A Randomized Clinical Trial.

Importance: Malignant pleural effusion (MPE) is challenging to manage. Talc pleurodesis is a common and effective treatment. There are no reliable data, however, regarding the optimal method for talc delivery, leading to differences in practice and recommendations. Objective: To test the hypothesis that administration of talc poudrage during thoracoscopy with local anesthesia is more effective than talc slurry delivered via chest tube in successfully inducing pleurodesis. Design, Setting, and Participants: Open-label, randomized clinical trial conducted at 17 UK hospitals. A total of 330 participants were enrolled from August 2012 to April 2018 and followed up until October 2018. Patients were eligible if they were older than 18 years, had a confirmed diagnosis of MPE, and could undergo thoracoscopy with local anesthesia. Patients were excluded if they required a thoracoscopy for diagnostic purposes or had evidence of nonexpandable lung. Interventions: Patients randomized to the talc poudrage group (n = 166) received 4 g of talc poudrage during thoracoscopy while under moderate sedation, while patients randomized to the control group (n = 164) underwent bedside chest tube insertion with local anesthesia followed by administration of 4 g of sterile talc slurry. Main Outcomes and Measures: The primary outcome was pleurodesis failure up to 90 days after randomization. Secondary outcomes included pleurodesis failure at 30 and 180 days; time to pleurodesis failure; number of nights spent in the hospital over 90 days; patient-reported thoracic pain and dyspnea at 7, 30, 90, and 180 days; health-related quality of life at 30, 90, and 180 days; all-cause mortality; and percentage of opacification on chest radiograph at drain removal and at 30, 90, and 180 days. Results: Among 330 patients who were randomized (mean age, 68 years; 181 [55%] women), 320 (97%) were included in the primary outcome analysis. At 90 days, the pleurodesis failure rate was 36 of 161 patients (22%) in the talc poudrage group and 38 of 159 (24%) in the talc slurry group (adjusted odds ratio, 0.91 [95% CI, 0.54-1.55]; P = .74; difference, -1.8% [95% CI, -10.7% to 7.2%]). No statistically significant differences were noted in any of the 24 prespecified secondary outcomes. Conclusions and Relevance: Among patients with malignant pleural effusion, thoracoscopic talc poudrage, compared with talc slurry delivered via chest tube, resulted in no significant difference in the rate of pleurodesis failure at 90 days. However, the study may have been underpowered to detect small but potentially important differences. Trial Registration: ISRCTN Identifier: ISRCTN47845793.

Who provides care in the last year of life? A description of care networks of community-dwelling older adults in the Netherlands.

BACKGROUND: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. METHODS/DESIGN: We used data from participants of the Longitudinal Aging Study Amsterdam (2001-2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees. RESULTS: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care. CONCLUSION: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.