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Aiming to illuminate the effects of enforced confinements on people's lives, this paper presents a novel dataset that measures human behaviour holistically and longitudinally during the COVID-19 outbreak. In particular, we conducted a study during the first wave of the lockdown, where 21 healthy subjects from the Netherlands and Greece participated, collecting multimodal raw and processed data from smartphone sensors, activity trackers, and users' responses to digital questionnaires. The study lasted more than two months, although the duration of the data collection varies per participant. The data are publicly available and can be used to model human behaviour in a broad sense as the dataset explores physical, social, emotional, and cognitive domains. The dataset offers an exemplary perspective on a given group of people that could be considered to build new models for investigating behaviour changes as a consequence of the lockdown. Importantly, to our knowledge, this is the first dataset combining passive sensing, experience sampling, and virtual assistants to study human behaviour dynamics in a prolonged lockdown situation. Measurement(s) 'human behaviour during the COVID-19 outbreak', 'human behaviour', 'physical behaviour', 'social behaviour', 'emotional behaviour', 'cognitive behaviour' Technology Type(s) 'smartphone device', 'activity tracker', 'digital questionnaires' Sample Characteristic - Organism 'human beings' Sample Characteristic - Location 'The Netherlands', 'Greece' [ABSTRACT FROM AUTHOR]

Background: Accounting for patients' perspective has become increasingly important. Based on the Consumer Quality Index method (founded on Consumer Assessment of Healthcare Providers and Systems) a questionnaire was recently developed for Dutch cancer patients. As a next step, this study aimed to adapt and pilot this questionnaire for international comparison of cancer patients experience and satisfaction with care in six European countries.Method: The Consumer Quality Index was translated into the local language at the participating pilot sites using cross-translation. A minimum of 100 patients per site were surveyed through convenience sampling. Data from seven pilot sites in six countries was collected through an online and paper-based survey. Internal consistency was tested by calculating Cronbach's alpha and validity by means of cognitive interviews. Demographic factors were compared as possible influencing factors.Results: A total of 698 patients from six European countries filled the questionnaire. Cronbach's alpha was good or satisfactory in 8 out of 10 categories. Patient satisfaction significantly differed between the countries. We observed no difference in patient satisfaction for age, gender, education, and tumor type, but satisfaction was significantly higher in patients with a higher level of activation.Conclusion: This European Cancer Consumer Quality Index(ECCQI) showed promising scores on internal consistency (reliability) and a good internal validity. The ECCQI is to our knowledge the first to measure and compare experiences and satisfaction of cancer patients on an international level, it may enable healthcare providers to improve the quality of cancer care. [ABSTRACT FROM AUTHOR]

Worldwide, the use of private supplementary tutoring, commonly referred to as shadow education, has become increasingly prevalent since the turn of the millennium. Recently, participation rates in the Netherlands have substantially increased. This paper aims to explore the place of shadow education in students' academic lives by studying the goals and experienced benefits that students identify. Data were collected through 37 semi-structured interviews with tutored students in secondary education in the Netherlands. Our findings indicate that students conceived of shadow education as a skill-building institution to which they turned to for self-study, to receive career support, and to boost their performance. Students' reflections reveal that shadow education builds upon and extends, but does not replace, learning activities at home and school. Based on our findings, we discuss how shadow education can function as a "third place" between school and home, occupying an increasingly prominent position in students' academic lives. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. Methods: We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision‐making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire. Results: A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self‐awareness; (5) consideration skills; (6) self‐efficacy; (7) emotional distress; and (8) experienced time. We developed the 20‐item ReadySDM to retrospectively measure these elements in an oncological setting. Conclusion: We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM. The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. Patient or Public Contribution: Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire. [ABSTRACT FROM AUTHOR]

Previous studies have reported an association between the COVID-19 pandemic, social distancing regulations and longing for touch (LFT; i.e., a discrepancy between actual touch frequency and one's desire to be touched). However, less is known about the prevalence and severity of LFT in the general population in the absence of social distancing regulations. The aim of this study was therefore to exploratively compare data collected during and after the pandemic. Pandemic data was collected online in an international sample (n = 1982), of which a matched subsample (n = 115) was used in the reported analyses. Post-pandemic data was collected one week after social distancing regulations restrictions were lifted in the Netherlands (n = 60) and when virtually no restrictions were in place (n = 55). The severity of LFT was significantly higher during the pandemic than afterwards. Although there were no significant differences in the general prevalence of LFT, significantly more participants reported high levels of LFT (score of 75–100) during the pandemic. We cautiously conclude that, although LFT may have peaked during the pandemic, a large portion of the general population desires to experience more interpersonal touch, even in the absence of social distancing regulations. [ABSTRACT FROM AUTHOR]

Background: A personal health record (PHR) is an online application through which individuals can access, manage, and share their health information in a private, secure, and confidential environment. Personal health records empower patients, facilitate collaboration among healthcare professionals, and improve health outcomes. Given these anticipated positive effects, we want to implement a PHR, named MyPregn@ncy, in a Dutch maternity care setting and to evaluate its effects in routine care. This paper presents the study protocol.Methods/design: The effects of implementing a PHR in maternity care on patients and professionals will be identified in a stepped-wedge, cluster-randomised, controlled trial. The study will be performed in the region of Nijmegen, a Dutch area with an average of 4,500 births a year and more than 230 healthcare professionals involved in maternity care. Data analyses will describe the effects of MyPregn@ncy on health outcomes in maternity care, quality of care from the patients' perspectives, and collaboration among healthcare professionals. Additionally, a process evaluation of the implementation of MyPregn@ncy will be performed. Data will be collected using data from the Dutch perinatal registry, questionnaires, interviews, and log data.Discussion: The study is expected to yield new information about the effects, strengths, possibilities, and challenges to the implementation and usage of a PHR in routine maternal care settings. Results may lead to new insights and improvements in the quality of maternal and perinatal care.Trial Registration: Netherlands Trial Register: NTR4063. [ABSTRACT FROM AUTHOR]

This paper intends to give an overview of almost 20 years (1994–2013) of field measurements at the Petten site in the Netherlands and to list the main research findings derived from these measurements. The main objectives of the Petten site were to obtain field data of (i) wave propagation from deep water through the surf zone to the dike, (ii) wave run-up against the dike, and (iii) (since 2006) wave overtopping. The paper describes the evolution of the site lay-out during its existence and discusses the data collection, processing and dissemination. The most important research findings based on Petten site data have been obtained in research projects like OPTICREST (1998–2001), CLASH (2002–2004) and WTI (2003–2013). The results of the WTI project (on wave overtopping, wave run-up, redundant wave measurements and rapid bathymetric changes) are described here in more detail, because these results have not gained widespread attention yet. [ABSTRACT FROM AUTHOR]

Background: Quality of care at the end of life in hospitals is often perceived to be lower compared to the care that is provided to people who die in their own home. Documenting and measuring indicators of common end-of-life symptoms could help improve end-of-life care in hospitals. This study provided insight into quality indicators for the end-of-life care of patients who died in a Dutch hospital, and assessed differences between deceased patients who were admitted for palliative/terminal care versus patients admitted for other reasons. Methods: In a retrospective record review study, trained nurses reviewed electronic health records (EHRs) of patients who died in 2019 (n = 2998), in a stratified sample of 20 Dutch hospitals. The nurses registered whether data was found in de EHRs about quality indicators for end-of-life care. This concerned: symptoms (pain, shortness of breath, anxiety, depressive symptoms), spiritual and psychological support and advance care planning. Multilevel regression analyses were performed to assess differences between patients who had been admitted for palliative/terminal care and patients admitted for other reasons. Results: Common end-of-life symptoms were rarely measured using a standardized method (e.g. Numeric Rating Scale, Visual Analogue Scale or Utrecht Symptom Diary). The symptom burden of pain was measured using a standardized method more often (63.3%) than the symptom burden of shortness of breath (2.2%), anxiety (0.5%) and depressive symptoms (0.3%). Similarly, little information was documented in the EHRs regarding wish to involve a spiritual counsellor, psychologist or social worker. Life expectancy was documented in 66%. The preferred place of death was documented less often (20%). The documentation of some quality indicators differed between patients who were admitted for palliative/terminal care compared to other patients. Conclusion: Except for the burden of pain, symptoms are rarely measured with standardized methods in patients who died in Dutch Hospitals. This study underlines the importance of documenting information about symptom burden and aspects related to advance care planning, and spiritual and psychological support to improve the quality of end-of-life care for patients in hospitals. Furthermore, uniformity in measuring methods improves the possibility to compare results between patient groups and settings. [ABSTRACT FROM AUTHOR]

Background. To date, there has been no attempt to describe or compare physical therapy as practiced globally, nor any evidence that an international data set exists to support this effort. It is known that research evidence can be used in strategic and tactical ways, especially within the highly politicized context of the policy arena. The International Private Practitioners Association recognized the potential value a global evidence base could have in influencing policy and supporting professional development in a number of countries, yet it lacked a mechanism to achieve these aims. Objectives. The purposes of this study were: (1) to identify and test an international data set, definitions, and means of data collection and (2) to establish views in relation to the value of international collaborations. Design. A mixed, prospective design was used in the study. Method. Phase 1 (2006-2007) involved the development of a data set, definitions, and Web-based and paper-based data collection options involving 98 physical therapists from 68 physical therapy practices in 7 countries. Phase 2 (2008-2009) involved testing of the data set in 34 practices involving 3,195 patient episodes and included physical therapist feedback of experience, local relevance of the data set, and value of international collaborations. Results. Testing confirmed the relevance and reliability of the data set and definitions and a preference for Web-based data collection (74.0%). Physical therapist feedback supported these findings. Most respondents (60.0%-100.0%) reported the value of further international collaborations for their profession nationally or internationally. Limitations. Although a true international collaboration, the limited sample size should be recognized. Conclusions. It is possible to develop an agreed-upon international data set and means of data collection. Testing appears to support its acceptability and relevance for use in practice. Participants highly valued the opportunity to undertake international collaborations that may benefit their profession nationally and internationally. Further testing and use of the data set are advocated before final validation is sought. [ABSTRACT FROM AUTHOR]

Background In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. Methods A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. Results The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. Conclusion Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills. [ABSTRACT FROM AUTHOR]

Introduction: Exertional heat stroke (EHS) is a medical emergency, occurring when the body generates more heat than it can dissipate, and frequently associated with exertional rhabdomyolysis (ERM). In the present study we aimed to (I) identify clinical features and risk factors, (II) describe current prehospital management, (III) investigate long-term outcomes including the impact on mental health, and review the guidance received during restarting activities. We hope that our approach will improve individual and organizational heat illness preparedness, and improve follow-up care. Methods: We performed a prospective online survey and retrospective medical record review among athletes and military personnel with an episode of EHS/ERM in the Netherlands between 2010 and 2020. We evaluated prehospital management, risk factors, clinical features and long-term outcomes at 6 and 12 months after the event, including mental health symptoms. Furthermore, we investigated what guidance participants received during follow-up, and assessed the patients' perspective on these outcomes. Results: Sixty participants were included, 42 male (70%) and 18 female (30%), of which 47 presented with EHS (78%) and 13 with ERM (22%). Prehospital management was inconsistent and in the majority of participants not conducted according to available guidelines. Self-reported risk factors included not feeling well-acclimatized to environmental heat (55%) and peer pressure (28%). Self-reported long-term symptoms included muscle symptoms at rest (26%) or during exercise (28%), and neurological sequelae (11%). Validated questionnaires (CIS, HADS and SF-36) were indicative of severe fatigue (30%) or mood/anxiety disorders (11%). Moreover, 90% expressed a lack of follow-up care and that a more frequent and intensive follow-up would have been beneficial for their recovery process. Conclusion: Our findings indicate major inconsistencies in the management of patients with EHS/ERM, emphasizing the compelling need for implementing standardized protocols. Based on the results of long-term outcome measures, we recommend to counsel and evaluate every patient not only immediately after the event, but also in the long-term. Key Findings: Major inconsistencies in prehospital and in-hospital management emphasizes the need to implement a standardizing prehospital treatment protocol. A large proportion of patients experience symptoms 12 months after the event, including muscle and mental health issues; Patients express a preference to receive more consistent advice when restarting their normal activities and/or sports. [ABSTRACT FROM AUTHOR]

Background: Compliance with perioperative anticoagulation guidelines is essential to minimize bleeding and thromboembolic risks in patients undergoing surgery. Compared to vitamin-K antagonists (VKAs), perioperative management of direct oral anticoagulants (DOACs) contains fewer steps. Therefore, we hypothesized that noncompliance with guidelines in VKA users is higher than in DOAC users. The primary aim of our study was to investigate the difference in noncompliance to perioperative anticoagulant management guidelines between elderly patients using VKAs versus those using DOACs. The secondary aim was to determine the difference in occurrence of conflicting information communicated to the patients and the difference in incidence of coagulation-related adverse events. Methods: This retrospective non-controlled observational cohort study examined elderly patients undergoing elective orthopedic surgery in a teaching hospital in the Netherlands. All patients undergoing elective orthopedic surgery between 1 May 2016 and 1 January 2020, aged 70 years and over, using VKAs or DOACs were selected. Nonelective surgeries were excluded. The primary outcome was the noncompliance to perioperative anticoagulant management guidelines. Secondary outcomes were missing or conflicting information on anticoagulation management communicated to the patient and coagulation-related adverse events. For continuous data, the unpaired T-test was used and for categorical data, the chi-square test. Results: In patients using VKAs, noncompliance to one of the steps of perioperative anticoagulation management was 81%, compared to 55% in patients using DOACs (p < 0.001). In most cases, VKAs or DOACs were interrupted for longer than recommended. In 13% of patients using a VKA with perioperative bridging, bridging was not conducted as recommended in the guidelines. In 13% of patients using a DOAC, a low-molecular-weight heparin (LMWH) was prescribed while a DOAC had already been restarted postoperatively. VKA users received conflicting information about perioperative anticoagulation management more often than DOAC users (33% versus 20%; p < 0.001). No difference was seen in postoperative coagulation-related complications. Conclusion: Guidelines compliance in DOAC users is higher than in VKA users. Clinical decision support to help in selecting the right interruption interval in DOAC users, simplified standardized perioperative management, good coordination of instructions given to patients, and familiarity with updated guidelines are important in reducing noncompliance. [ABSTRACT FROM AUTHOR]

Introduction: Acute respiratory infections are common in frail, community-dwelling older people and are accompanied by considerable diagnostic and prognostic uncertainties. Inadequately coordinated care is associated with unnecessary hospital referral and admission with potential iatrogenic harm. Therefore, we aimed to cocreate a regional integrated care pathway (ICP), including a hospital at home journey. Developing the ICP: Tasked with using design thinking methodology, stakeholders from regional healthcare facilities, together with patient representatives, were assigned to different focus groups based on their expertise. The focus of each session was to co-create ideal patient journeys suitable for embedding in the ICP. Results: Based on these sessions, a regional cross-domain ICP was developed that comprises three patient journeys. The first journey included a hospital at home track, the second a tailored visit, with priority assessment, to regional emergency departments, and the third concerned referral to readily available nursing home ‘recovery-beds’ under the supervision of an elderly care medicine specialist. Conclusion: Using design thinking and involving end-users during the whole process, we created an ICP for community-dwelling frail older people with moderate-severe acute respiratory infections. This resulted in three realistic patient journeys, including a hospital at home track, which will be implemented and evaluated in the near future. [ABSTRACT FROM AUTHOR]

Background: Studies focusing on patterns of psychotropic drug prescriptions (PDPs) for subpopulations of community-dwelling older people with dementia are lacking. Objective: The aim of this study was to identify the longitudinal patterns of PDPs in subpopulations. Methods: This retrospective study used electronic health records from general practitioners (GPs) in the Netherlands. People (N = 1278) firstly diagnosed with dementia between 2013 and 2015, aged 65 years or older, were selected and categorized into four subpopulations: community-dwelling (CD) group throughout follow-up, ultimately admitted to nursing homes (NH) group, ultimately died (DIE) group, and ultimately deregistered for unclear reasons (DeR) group. Generalised estimating equations were used to estimate the patterns of psychotropic drug prescriptions, after the diagnosis of dementia for a five-year follow-up, and 0–3 months before institutionalisation or death. Results: Over the five-year follow-up, antipsychotic prescriptions increased steadily in CD (OR = 1.07 [1.04–1.10]), NH (OR = 1.10 [1.04–1.15]), and DIE (OR = 1.05 [1.02–1.08]) groups. Similarly, prescriptions of antidepressants also showed upward trends in CD (OR = 1.04 [1.02–1.06]), NH (OR = 1.10 [1.02–1.18]), and DIE (OR = 1.04 [1.00–1.08]) groups. The other psychotropic drugs did not show clear changes over time in most of the subpopulations. In the three months before institutionalisation, antipsychotic prescriptions increased (OR = 2.12 [1.26–3.57]) in the NH group compared to prior periods. Likewise, before death, prescriptions of antipsychotics (OR = 1.74 [1.28–2.38]) and hypnotics and sedatives (OR = 2.11 [1.54–2.90]) increased in the DIE group, while anti-dementia drug prescriptions decreased (OR = 0.42 [0.26–0.69]). Conclusions: After community-dwelling older people are diagnosed with dementia, all subpopulations' prescriptions of antipsychotics and antidepressants increase continuously during the follow-up. While we cannot judge whether these prescriptions are appropriate, GPs might consider a more reluctant use of psychotropic drugs and use alternative psychosocial interventions. Additionally, antipsychotic prescriptions rise considerably shortly before institutionalisation or death, which might reflect that older people experience more neuropsychiatric symptoms during this period. [ABSTRACT FROM AUTHOR]

Large-scale cultural events bring many economic, social, and cultural benefits to the hosting cities. Although event producers aim to satisfy the visitors' needs, they do not usually receive feedback on visitors' experiences. Moreover, lack of spatial dispersal of visitors might result in less visibility for some activities and locations. An understanding of visitors' spatial and temporal behavior and the factors influencing visitors' intra-event destination choices is key to efficient and successful event management and future planning. In this article, we examine the relationship between visitors' spatial and temporal behavior, the spatial structure of the host city, and visitor characteristics. In order to do this, data are collected from 281 event visitors by means of GPS tracking and paper surveys at the Dutch Design Week (DDW) 2017 event in Eindhoven, the Netherlands. Data are used to understand the area of interest locations, visitor flows, visitor clusters and area of interest choices by applying data processing, network analysis, cluster analysis and bivariate analysis. The results show that one of the three dedicated event areas was considerably less popular by the DDW visitors. Moreover, the choice of intra-event destination locations and areas depended mainly on temporal constraints of the visitors. The findings of this study can inform future event planning and management policies in hosting cities. [ABSTRACT FROM AUTHOR]

Objectives The presence of melanoma differentiation-associated protein 5 (MDA5) antibodies in patients with DM is associated with the development of a rapidly progressive interstitial lung disease (RPILD), unresponsive to conventional treatment. We characterize patients and provide more insight into potential biomarkers to identify patients with RPILD. Methods Patients diagnosed with anti-MDA5 positive DM between December 2015 and November 2017 were included in this study. Clinical data were retrospectively retrieved from medical records. A total of 180 immune-related markers were measured in sera of 16 patients and 15 healthy controls using proximity extension assay-based technology. Results Twenty patients were included, with a median time from symptoms till diagnosis of 4 months. All patients had clinically amyopathic DM. Interstitial lung disease (ILD) was present at diagnosis in 94% of the patients, 45% presented with RPILD. The mortality rate was 35% within 4 months after diagnosis and respiratory failure was the main cause of death in these patients. Furthermore, unsupervised analysis revealed that patients with RPILD show clearly different inflammatory serum profiles than healthy controls. In addition, in comparison to healthy controls, the IFN, IL1, IL10 and IL18 signalling pathways are different regulated in anti-MDA5 positive patients. Conclusion In this Dutch anti-MDA5 positive clinically amyopathic DM (CADM) cohort, one-third of the patients died due to RPILD soon after diagnosis, which underlines the severity of this disease. In addition, we have found several possible pathways that are differentially regulated in RPILD vs no RPILD DM and healthy controls. These markers await further validation before clinical use. [ABSTRACT FROM AUTHOR]

This document introduces the process for the creation of a testbed for energy applications based on a semantic 3D city model for the municipality of Rijssen-Holten in The Netherlands. The creation of this dataset requires the consolidation from multiple data sources as well as a lot of manual work so the authors can warranty as much as possible the quality of the dataset so in can be used in several use cases. The data is stored following the OGC standard CityGML v2.0 and contain the geometrical and semantical information of CityObjects from the thematic modules Building, Vegetation and Relief. This data set consolidates the open weather data from the closest weather station to the study area located in Heino in the Netherlands. We discuss the decisions taken during the manual data collection process and we present some use cases that have already consume the dataset at the time of writing this document. [ABSTRACT FROM AUTHOR]

The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe. [ABSTRACT FROM AUTHOR]

Background: Hospital readmission after transplantation is common in kidney transplant recipients (KTRs). In this study, we aim to compare the risk of 3-month hospital readmission after kidney transplantation with different donor types in the overall population and in both young (< 65 years) and elderly (≥65 years) KTRs.Methods: We included all first-time adult KTRs from 2016 to 2018 in the Netherlands Organ Transplant Registry. Multivariable logistic regression models were used to estimate the effect while adjusting for baseline confounders.Results: Among 1917 KTRs, 615 (32.1%) had at least one hospital readmission. Living donor kidney transplantation (LDKT) recipients had an adjusted OR of 0.76 (95%CI, 0.61 to 0.96; p = 0.02) for hospital readmission compared to deceased donor kidney transplantation (DDKT) recipients. In the young and elderly, the adjusted ORs were 0.69 (95%CI, 0.52 to 0.90, p = 0.01) and 0.93 (95%CI, 0.62 to 1.39, p = 0.73) and did not differ significantly from each other (p-value for interaction = 0.38). In DDKT, the risk of hospital readmission is similar between recipients with donation after cardiac death (DCD) or brain death (DBD) and the risk was similar between the young and elderly.Conclusion: A lower risk of post-transplant 3-month hospital readmission was found in recipients after LDKT compared to DDKT, and this benefit of LDKT might be less dominant in elderly patients. In DDKT, having either DCD or DBD donors is not associated with post-transplant 3-month hospital readmission, regardless of age. Tailored patient management is needed for recipients with DDKT and elderly KTRs. [ABSTRACT FROM AUTHOR]

Purpose: This study examines how modular interfaces manifest in multi-provider contexts and how they can improve coordination and customization of services. The aim of the study is to describe interfaces in multi-provider contexts and elaborate on how they support the delivery of integrated patient care. Design/methodology/approach: A qualitative, multiple case study was conducted in two multi-provider contexts in healthcare services: one representing paediatric Down syndrome care in the Netherlands and one representing home care for the elderly in Finland. Data collection involved semi-structured interviews in both contexts. Findings: This study provides insight into several types of interfaces and their role in multi-provider contexts. Several inter- and intra-organizational situations were identified in which the delivery of integrated patient care was jeopardized. This study describes how interfaces can help to alleviate these situations. Originality/value: This study deepens the understanding of interfaces in service modularity by describing interfaces in multi-provider contexts. The multi-provider contexts studied inspired to incorporate the inter-organizational aspect into the literature on interfaces in service modularity. This study further develops the typology for interfaces in modular services by adding a third dimension to the typology, that is, the orientation of interfaces. [ABSTRACT FROM AUTHOR]

Background: The potentials of audit and feedback (AF) to improve healthcare are currently not exploited. To unlock the potentials of AF, this study focused on the process of making sense of audit data and translating data into actionable feedback by studying a specific AF-case: limiting antimicrobial resistance (AMR). This was done via audit and feedback of AMR prevention measures (APM) that are executed by healthcare workers (HCW) in their day-to-day contact with patients. This study's aim was to counterbalance the current predominantly top-down, expert-driven audit and feedback approach for APM, with needs and expectations of HCW. Methods: Qualitative semi-structured interviews were held with sixteen HCW (i.e. physicians, residents and nurses) from high-risk AMR departments at a regional hospital in The Netherlands. Deductive coding was succeeded by open and axial coding to establish main codes, subcodes and variations within codes. Results: HCW demand insights from audits into all facets of APM in their working routines (i.e. diagnostics, treatment and infection control), preferably in the form of simple and actionable feedback that invites interdisciplinary discussions, so that substantiated actions for improvement can be implemented. AF should not be seen as an isolated ad-hoc intervention, but as a recurrent, long-term, and organic improvement strategy that balances the primary aims of HCW (i.e. improving quality and safety of care for individual patients and HCW) and AMR-experts (i.e. reducing the burden of AMR). Conclusions: To unlock the learning and improvement potentials of audit and feedback, HCW' and AMR-experts' perspectives should be balanced throughout the whole AF-loop (incl. data collection, analysis, visualization, feedback and planning, implementing and monitoring actions). APM-AF should be flexible, so that both audit (incl. collecting and combining the right data in an efficient and transparent manner) and feedback (incl. persuasive and actionable feedback) can be tailored to the needs of various target groups. To balance HCW' and AMR-experts' perspectives a participatory holistic AF development approach is advocated. [ABSTRACT FROM AUTHOR]

The PHARMO Database Network provides a unique opportunity to gain insight in the complete patient journey and healthcare in the Netherlands. The PHARMO Database Network is a population-based network of electronic healthcare databases and combines anonymous data from different primary and secondary healthcare settings in the Netherlands. Healthcare settings include general practitioners, out-patient and in-patient pharmacies, hospitals and clinical laboratories. Furthermore, databases are linked with external registries such as the Cancer Registry, Pathology Registry and Perinatal Registry. The different data sources are linked on a patient level through probabilistic linkage based on validated algorithms. The longitudinal and ongoing nature of the PHARMO Database Network system enables to follow up more than 10 million residents of the Netherlands for an average of 12 years. Data collection period, catchment area and overlap between data sources differ. Access to the PHARMO Database Network is, by governance regulations of the data collection, restricted to researchers of the PHARMO Institute and academic affiliates. Each data request is checked against privacy and company policies, and requires approval of the privacy and governance board. The terms and conditions and a data application form are available on the PHARMO website (www.pharmo.com). [ABSTRACT FROM AUTHOR]

Background: Regional population health management (PHM) initiatives need an understanding of regional patient experiences to improve their services. Websites that gather patient ratings have become common and could be a helpful tool in this effort. Therefore, this study explores whether unsolicited online ratings can provide insight into (differences in) patient's experiences at a (regional) population level.Methods: Unsolicited online ratings from the Dutch website Zorgkaart Nederland (year = 2008-2017) were used. Patients rated their care providers on six dimensions from 1 to 10 and these ratings were geographically aggregated based on nine PHM regions. Distributions were explored between regions. Multilevel analyses per provider category, which produced Intraclass Correlation Coefficients (ICC), were performed to determine clustering of ratings of providers located within regions. If ratings were clustered, then this would indicate that differences found between regions could be attributed to regional characteristics (e.g. demographics or regional policy).Results: In the nine regions, 70,889 ratings covering 4100 care providers were available. Overall, average regional scores (range = 8.3-8.6) showed significant albeit small differences. Multilevel analyses indicated little clustering between unsolicited provider ratings within regions, as the regional level ICCs were low (ICC pioneer site < 0.01). At the provider level, all ICCs were above 0.11, which showed that ratings were clustered.Conclusions: Unsolicited online provider-based ratings are able to discern (small) differences between regions, similar to solicited data. However, these differences could not be attributed to the regional level, making unsolicited ratings not useful for overall regional policy evaluations. At the provider level, ratings can be used by regions to identify under-performing providers within their regions. [ABSTRACT FROM AUTHOR]

Background: Periods of extreme food shortages during war force people to eat food that they normally do not consider edible. The last time that countries in Western Europe experienced severe scarcities was during World War II. The so-called Dutch famine or Hunger Winter (1944-1945) made at least 25,000 victims. The Dutch government took action by opening soup kitchens and providing information on wild plants and other famine food sources in "wartime cookbooks." The Dutch wartime diet has never been examined from an ethnobotanical perspective. Methods: We interviewed 78 elderly Dutch citizens to verify what they remembered of the consumption of vegetal and fungal famine food during World War II by them and their close surroundings. We asked whether they experienced any adverse effects from consuming famine food plants and how they knew they were edible. We identified plant species mentioned during interviews by their local Dutch names and illustrated field guides and floras. We hypothesized that people living in rural areas consumed more wild species than urban people. A Welch t test was performed to verify whether the number of wild and cultivated species differed between urban and rural citizens. Results: A total number of 38 emergency food species (14 cultivated and 21 wild plants, three wild fungi) were mentioned during interviews. Sugar beets, tulip bulbs, and potato peels were most frequently consumed. Regularly eaten wild species were common nettle, blackberry, and beechnuts. Almost one third of our interviewees explicitly described to have experienced extreme hunger during the war. People from rural areas listed significantly more wild species than urban people. The number of cultivated species consumed by both groups was similar. Negative effects were limited to sore throats and stomachache from the consumption of sugar beets and tulip bulbs. Knowledge on the edibility of famine food was obtained largely by oral transmission; few people remembered the written recipes in wartime cookbooks. Conclusion: This research shows that 71 years after the Second World War, knowledge on famine food species, once crucial for people's survival, is still present in the Dutch society. The information on famine food sources supplied by several institutions was not distributed widely. For the necessary revival of famine food knowledge during the 1940s, people needed to consult a small group of elders. Presumed toxicity was a major reason given by our participants to explain why they did not collect wild plants or mushrooms during the war. [ABSTRACT FROM AUTHOR]

Background: High levels of mental well-being might protect against the onset of mental disorders but longitudinal evidence is scarce. This study examines whether flourishing mental health predicts first-incidence and recurrent mental disorders 3 years later. Methods: Data were used from 4482 representative adults participating in the second (2010-12) and third wave (2013-15) of the Netherlands Mental Health Survey and Incidence Study-2 (NEMESIS-2). Mental well-being was assessed with the Mental Health Continuum-Short Form (MHC-SF) at the second wave. The classification criteria of this instrument were used to classify participants as having flourishing mental health: high levels of both hedonic well-being (life-satisfaction, happiness) and eudaimonic well-being (social contribution, purpose in life, personal growth). DSM-IV mood, anxiety and substance use disorders were measured with the Composite International Diagnostic Interview (CIDI) 3.0 at all waves. Odds ratios of (first and recurrent) incident disorders were estimated, using logistic regression analyses adjusting for potential confounders. Results: Flourishing reduced the risk of incident mood disorders by 28% and of anxiety disorders by 53%, but did not significantly predicted substance use disorders. A similar pattern of associations was found for either high hedonic or high eudaimonic well-being. Significant results were found for substance use disorders when life-events and social support were removed as covariates. Conclusion: This study underscores the rationale of promoting mental well-being as a public mental health strategy to prevent mental illness. In wealthy European nations it seems fruitful to measure and pursuit a flourishing life rather than merely high levels of hedonic well-being. [ABSTRACT FROM AUTHOR]

Background: Ethnic differences in colon cancer (CC) care were shown in the United States, but results are not directly applicable to European countries due to fundamental healthcare system differences. This is the first study addressing ethnic differences in treatment and survival for CC in the Netherlands.Methods: Data of 101,882 patients diagnosed with CC in 1996-2011 were selected from the Netherlands Cancer Registry and linked to databases from Statistics Netherlands. Ethnic differences in lymph node (LN) evaluation, anastomotic leakage and adjuvant chemotherapy were analysed using stepwise logistic regression models. Stepwise Cox regression was used to examine the influence of ethnic differences in adjuvant chemotherapy on 5-year all-cause and colorectal cancer-specific survival.Results: Adequate LN evaluation was significantly more likely for patients from 'other Western' countries than for the Dutch (OR 1.09; 95% CI 1.01-1.16). 'Other Western' patients had a significantly higher risk of anastomotic leakage after resection (OR 1.24; 95% CI 1.05-1.47). Patients of Moroccan origin were significantly less likely to receive adjuvant chemotherapy (OR 0.27; 95% CI 0.13-0.59). Ethnic differences were not fully explained by differences in socioeconomic and hospital-related characteristics. The higher 5-year all-cause mortality of Moroccan patients (HR 1.64; 95% CI 1.03-2.61) was statistically explained by differences in adjuvant chemotherapy receipt.Conclusion: These results suggest the presence of ethnic inequalities in CC care in the Netherlands. We recommend further analysis of the role of comorbidity, communication in patient-provider interaction and patients' health literacy when looking at ethnic differences in treatment for CC. [ABSTRACT FROM AUTHOR]

Aims: Implantable cardioverter-defibrillator (ICD) treatment is beneficial in selected patients. However, it remains difficult to accurately predict which patients benefit most from ICD implantation. For this purpose, different risk models have been developed. The aim was to validate and compare the FADES, MADIT, and SHFM-D models.Methods and Results: All patients receiving a prophylactic ICD at the Leiden University Medical Center were evaluated. Individual model performance was evaluated by C-statistics. Model performances were compared using net reclassification improvement (NRI) and integrated differentiation improvement (IDI). The primary endpoint was non-benefit of ICD treatment, defined as mortality without prior ventricular arrhythmias requiring ICD intervention. A total of 1969 patients were included (age 63 ± 11 years; 79% male). During a median follow-up of 4.5 ± 3.9 years, 318 (16%) patients died without prior ICD intervention. All three risk models were predictive for event-free mortality (all: P < 0.001). The C-statistics were 0.66, 0.69, and 0.75, respectively, for FADES, MADIT, and SHFM-D (all: P < 0.001). Application of the SHFM-D resulted in an improved IDI of 4% and NRI of 26% compared with MADIT; IDI improved 11% with the use of SHFM-D instead of FADES (all: P < 0.001), but NRI remained unchanged (P = 0.71). Patients in the highest-risk category of the MADIT and SHFM-D models had 1.7 times higher risk to experience ICD non-benefit than receive appropriate ICD interventions [MADIT: mean difference (MD) 20% (95% CI: 7-33%), P = 0.001; SHFM-D: MD 16% (95% CI: 5-27%), P = 0.005]. Patients in the highest-risk category of FADES were as likely to experience ICD intervention as ICD non-benefit [MD 3% (95% CI: -8 to 14%), P = 0.60].Conclusion: The predictive and discriminatory value of SHFM-D to predict non-benefit of ICD treatment is superior to FADES and MADIT in patients receiving prophylactic ICD treatment. [ABSTRACT FROM AUTHOR]

Introduction: Integrated stroke care in the Netherlands is constantly changing to strive to better care for stroke patients. The aim of this study was to explore if and on what topics integrated stroke care has been improved in the past three years and if stroke services were further developed. Methods: A web based self-assessment instrument, based on the validated Development Model for Integrated Care, was used to collect data. In total 53 coordinators of stroke services completed the questionnaire with 98 elements and four phases of development concerning the organisation of the stroke service. Data were collected in 2012 and 2015. Descriptive-comparative statistics were used to analyse the data. Results: In 2012, stroke services on average had implemented 56 of the 89 elements of integrated care (range 15-88). In 2015 this was increased up to 70 elements on average (range 37-89). In total, stroke services showed development on all clusters of integrated care. In 2015, more stroke services were in further phases of development like in the consolidation and transformation phase and less were in the initiative and design phase. The results show large differences between individual stroke services. Priorities to further develop stroke services changed over the three years of data collection. Conclusions: Based on the assessment instrument, it was shown that stroke services in the Netherlands were further developed in terms of implemented elements of integrated care and their phase of development. This three year comparison showed unique first analyses over time of integrated stroke care in the Netherlands on a large scale. Interesting further questions are to research the outcomes of stroke care in relation to this development, and if benefits on patient level can be assessed. [ABSTRACT FROM AUTHOR]

Background: In 2006 The Dutch Health Care system changed to a market oriented system. The GP remuneration changed from ±2/3 capitation patients and 1/3 private patients before 2006 to a mixed payment scheme. From 2006 onward every patient was insured and the GP received partly capitation, partly fees for consultations and for specific services. This change coincided with many other organisational changes in General Practice care. Our research question was if during the years after 2006 patient experiences of Dutch family practice had changed. We also wanted to explore the influence of patient and practice characteristics on patient experiences. Data on patient experiences were available from 2007 to 2012. Method: In a series of annual cross sectional patient surveys the performance of GPs and practices was measured. Patient sampling took place as a part of the Dutch accreditation program in 1657 practices involving 2966 GPs. Patients' experiences, gender, age, health status, and number of annual consultations were documented as well as the type and location of practices. Linear regression analysis was used to examine time trends in patient experiences and the impact of patient and practice characteristics. Results: 78,985 patients assessed the performance of 2966 GPs, and 45,773 patients assessed the organisation of 1657 practices. The number of patients with positive experiences increased significantly between 2007 and 2012; respectively 4.8 % for GPs (beta 0.20 and p < 0.0001) and 6.6 % for practices (beta 0.10, p < 0.004). Higher age, having no chronic illness, more frequent consultations and attending single-handed practices, predicted better patient experiences. Conclusions: In our evaluation of patient experiences with general practice care from 2007 to 2012 we found an increase of 4.8 % for GPs and 6.6 % for practices respectively. This improvement is significant. While no direct causation can be made, possible explanations may be found in the various reforms in Dutch family practice since 2006. More insight is needed into key determinants of this improvement before policymakers and care providers can attribute the improvement to these reforms. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration.Methods: A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.Results: Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.Conclusion: Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death. [ABSTRACT FROM AUTHOR]

Background: Measuring patients’ experiences to determine health ‐ care performance and quality of care from their perspective can provide valuable evidence for international improvements in the quality of care. We compare patients’ experiences in Accident & Emergency departments (A&E) in England and the Netherlands and discuss the usefulness of this comparison. Methods: A cross ‐ sectional survey was conducted among patients attending A&Es aged 18 years and older. In England, 134 A&Es were surveyed. In the Netherlands, nine hospitals participated in the study. Main outcome measures were patients’ experiences represented by six domain scores aggregated on the country level or on the A&E level. Results: In England, 43 892 completed questionnaires were received (40%). In the Netherlands, 1865 completed questionnaires were received (42%). Three of six domain scores were significantly higher for patients in the Netherlands: ‘waiting time’ [mean scores of 73.8 (NL) versus 67.2 (ENG)], ‘doctors and nurses’ [mean scores of 85.7 (NL) versus 80.6 (ENG)] and ‘your care and treatment’ [mean scores of 82.6 (NL) and 80.2 (ENG)]. The variance among the English A&Es was large. The best and worst practices on five domains were English. Conclusions: The mean quality of care in the A&E appeared to be better in the Netherlands on three domains, but the best practices were English A&Es. The within ‐ country differences between A&Es were much larger than differences between countries. Healthcare performance in the A&E can be compared between countries by surveying patients’ experiences, and there seems much to learn across A&Es both within and among countries. [ABSTRACT FROM AUTHOR]

Background: Strong primary care systems are believed to have an important role in dealing with healthcare challenges. Strengthening primary care systems is therefore a common policy goal for many countries. This study aims to investigate whether the Netherlands, the UK and Germany have strengthened their primary care systems in 2006-2012. Method: For this cross-sectional study, data from the International Health Policy surveys of the Commonwealth Fund in 2006, 2009 and 2012 were used. The surveys represent the experiences and perspectives of primary care physicians with their primary care system. The changes over time were researched in three areas: organization of primary care processes, use of IT in primary care and use of benchmarking and financial incentives for performance improvement. Results: Regarding organization of primary care processes, in all countries the use of supporting personnel in general practice increased, but at the same time practice accessibility decreased. IT services were most advanced in the UK. The UK and the Netherlands showed increased use of performance feedback information. German GPs were least satisfied with how their system works across the 2006-2012 timeframe. Conclusion: All three countries show trends towards stronger primary care systems, although in different areas. Coordination and comprehensive care through the assignment of assisting personnel and use of disease management programs improved in all countries. In the Netherlands and the UK, informational continuity is in part ensured through better IT services. All countries showed increasing difficulties upholding primary care accessibility. [ABSTRACT FROM AUTHOR]

Background: The number of people with multiple chronic conditions demanding primary care services is increasing. To deal with the complex health care demands of these people, professionals from different disciplines collaborate. This study aims to explore influential factors regarding interprofessional collaboration related to care plan development in primary care. Methods: A qualitative study, including four semi-structured focus group interviews (n = 4). In total, a heterogeneous group of experts (n = 16) and health care professionals (n = 15) participated. Participants discussed viewpoints, barriers, and facilitators regarding interprofessional collaboration related to care plan development. The data were analysed by means of inductive content analysis. Results: The findings show a variety of factors influencing the interprofessional collaboration in developing a care plan. Factors can be divided into 5 key categories: (1) patient-related factors: active role, self-management, goals and wishes, membership of the team; (2) professional-related factors: individual competences, domain thinking, motivation; (3) interpersonal factors: language differences, knowing each other, trust and respect, and motivation; (4) organisational factors: structure, composition, time, shared vision, leadership and administrative support; and (5) external factors: education, culture, hierarchy, domain thinking, law and regulations, finance, technology and ICT. Conclusions: Improving interprofessional collaboration regarding care plan development calls for an integral approach including patient- and professional related factors, interpersonal, organisational, and external factors. Further, the leader of the team seems to play a key role in watching the patient perspective, organising and coordinating interprofessional collaborations, and guiding the team through developments. The results of this study can be used as input for developing tools and interventions targeted at executing and improving interprofessional collaboration related to care plan development. [ABSTRACT FROM AUTHOR]

Background: Children attending day care centres are at increased risk of infectious diseases, in particular gastrointestinal and respiratory infections. Hand hygiene of both caregivers and children is an effective prevention measure. This study examined hand hygiene behaviour of children attending day care centres, and describes hygiene facilities at day care centres. Methods: Data were collected at 115 Dutch day care centres, among 2318 children cared for by 231 caregivers (August to October 2010). Children's hand hygiene behaviour was observed and data on hand hygiene facilities of the day care centres collected by direct unobtrusive observation. National guidelines indicate hand hygiene is required before eating, after toilet use and after playing outside. Results: Among 1930 observed hand hygiene opportunities for children, overall adherence to hand hygiene guidelines was 31% (95% CI: 29-33%). Adherence after both toilet use and playing outside was 48%. Hands were less frequently washed before eating, where guideline adherence was 15%. In 38% of the playrooms there was no soap within reach of children and 17% had no towel facilities. In over 40% of the playrooms, appropriate hand hygiene facilities for children were lacking. Conclusion: Adequate hand washing facilities were available for children in only half of the participating day care centres in our study and children washed their hands in only 15-48% of the occasions defined by official guidelines. More attention is needed to hand hygiene of children attending day care centres in the prevention of infectious diseases. [ABSTRACT FROM AUTHOR]

Background: Routine primary care data are increasingly being used for evaluation and research purposes but there are concerns about the completeness and accuracy of diagnoses and events captured in such databases. We evaluated how well patients with major cardiovascular disease (CVD) can be identified using primary care morbidity data and drug prescriptions.Methods: The study was conducted using data from 17,230 diabetes patients of the GIANTT database and Dutch Hospital Data register. To estimate the accuracy of the different measures, we analyzed the sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) relative to hospitalizations and/or records with a diagnosis indicating major CVD, including ischaemic heart diseases and cerebrovascular events.Results: Using primary care morbidity data, 43% of major CVD hospitalizations could be identified. Adding drug prescriptions to the search increased the sensitivity up to 94%. A proxy of at least one prescription of either a platelet aggregation inhibitor, vitamin k antagonist or nitrate could identify 85% of patients with a history of major CVD recorded in primary care, with an NPV of 97%. Using the same proxy, 57% of incident major CVD recorded in primary or hospital care could be identified, with an NPV of 99%.Conclusions: A substantial proportion of major CVD hospitalizations was not recorded in primary care morbidity data. Drug prescriptions can be used in addition to diagnosis codes to identify more patients with major CVD, and also to identify patients without a history of major CVD. [ABSTRACT FROM AUTHOR]

Background: Back pain is one of the most expensive health complaints. Comparing the economic aspects of back pain interventions may therefore contribute to a more efficient use of available resources. This study reports on a long-term cost-effectiveness analysis (CEA) and cost-utility analysis (CUA) of two treatments as viewed from a societal perspective: 1) exposure in vivo treatment (EXP), a recently developed cognitive behavioral treatment for patients with chronic low back pain who have elevated pain-related fear and 2) the more commonly used graded activity (GA) treatment.Methods: Sixty-two patients with non-specific chronic low back pain received either EXP or GA. Primary data were collected at four participating treatment centers in the Netherlands. Primary outcomes were self-reported disability (for the CEA) and quality-adjusted life years (for the CUA). Program costs, health care utilization, patient and family costs, and production losses were measured by analyzing therapy records and cost diaries. Data was gathered before, during, and after treatment, and at 6 and 12 months after treatment. Non-parametric bootstrap analyses were used to quantify the uncertainty concerning the cost-effectiveness ratio. In addition, cost-effectiveness planes and cost-effectiveness acceptability curves were performed.Results: EXP showed a tendency to reduce disability, increase quality adjusted life years and decrease costs compared to GA. The incremental cost-effectiveness ratios of both the CEA and CUA are in favor of EXP.Conclusions: Based on these results, implementing EXP for this group of patients seems to be the best decision.Trial Registration: ISRCTN88087718. [ABSTRACT FROM AUTHOR]

Background and objective: Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample: The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method: This study had a descriptive design using qualitative methods: 18 in‐depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion: The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short‐term solutions to practical problems, while professionals perceived great benefits in long‐term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long‐term support, to build a solid basis for pursuing meaningful involvement in the entire decision‐making process. [ABSTRACT FROM AUTHOR]

The article focuses on the role of general practitioner (GP) regarding the use of publicly available quality information when selecting health-care provider. Topics mentioned include the health care quality management, the social aspects of public health, and the patients participation. Also mentioned are the public health management and the decision-making in GP.

The article presents the study on the perceived efficacy and barriers in consultation participation, interest in communication support, and the correlation of perceived efficacy and efficacy among chronic patients. Methods for gathering data on the barriers to communication support and participation through Perceived Efficacy in Patient-Provider Interaction scale was provided. Results were outlined and conclude the confidence on medical interaction among chronically ill patients.

The article presents a study which aims to investigate the children's experience and perspectives on the quality of hospital care in Netherlands. The study used a qualitative study with key methods such as participatory data collection, photovoice, and children's letter writing to the hospital executives.

The article presents a study which aims to explore the use and consequences of personal health community (PHC) in the health care setting. Among the key focus of the study include the quality of health care on patients wih Parkinson's disease and women with infertility problems. Results conclude that PHC is a promising tool in improving the healthcare and patient's experience.

Objective: To describe influences on decision-making and prognostic variables in the prenatal management of fetal lower urinary tract obstruction (LUTO).Methods: This was a prospective registry study of pregnant women with a male fetus with LUTO from centers within the British Isles and The Netherlands. Women and/or their clinicians were given the treatment option of either conservative management or vesicoamniotic shunting (VAS). Baseline characteristics of women in the registry, reasons for entry to the registry and pregnancy outcomes were assessed. The main study outcomes were survival to 28 days after delivery, further survival to 2 years and renal function. Logistic regression analysis was used to examine prognostic variables that affected outcome. Results were compared with those of women in a randomized controlled trial (RCT) who were allocated randomly to a treatment option.Results: Forty-five women were registered, of whom 78% (35/45) underwent conservative management. Twenty-seven women entered the registry owing to their clinician's preference for management and 18 because of their own preference. Compared to the conservative-management group of the RCT, a higher proportion of women in the registry opting for conservative management had a normal amniotic fluid volume at diagnosis (P = 0.05) and a diagnosis of LUTO ≥ 24 weeks' gestation (P = 0.003). On multivariable logistic regression analysis, these variables showed a significant association with perinatal survival (P < 0.001). Survival to 28 days after delivery was higher in the conservative-management group, at 69% (24/35), compared to 40% (4/10) in the VAS group (P = 0.02) but this difference had limited statistical significance owing to small study size (relative risk, 0.58 (95% CI, 0.26-1.29); P = 0.14).Conclusion: In our prospective registry, the majority of fetuses with LUTO received conservative management, which was associated with better short- and long-term outcomes. A significant proportion of these pregnancies had normal amniotic fluid volume and a gestational age at diagnosis of ≥ 24 weeks, characteristics shown to be associated with improved survival. [ABSTRACT FROM AUTHOR]

The LifeLines Cohort Study is a large population-based cohort study and biobank that was established as a resource for research on complex interactions between environmental, phenotypic and genomic factors in the development of chronic diseases and healthy ageing. Between 2006 and 2013, inhabitants of the northern part of The Netherlands and their families were invited to participate, thereby contributing to a three-generation design. Participants visited one of the LifeLines research sites for a physical examination, including lung function, ECG and cognition tests, and completed extensive questionnaires. Baseline data were collected for 167 729 participants, aged from 6 months to 93 years. Follow-up visits are scheduled every 5 years, and in between participants receive follow-up questionnaires. Linkage is being established with medical registries and environmental data. LifeLines contains information on biochemistry, medical history, psychosocial characteristics, lifestyle and more. Genomic data are available including genome-wide genetic data of 15 638 participants. Fasting blood and 24-h urine samples are processed on the day of collection and stored at -80 °C in a fully automated storage facility. The aim of LifeLines is to be a resource for the national and international scientific community. Requests for data and biomaterials can be submitted to the LifeLines Research Office [LLscience@umcg.nl]. [ABSTRACT FROM AUTHOR]

Object: To determine the level of mainstream education in a nationwide cohort of adolescents with Down Syndrome (DS), and to find characteristics related to mainstream or special school attendance. Method: Dutch children with DS born in 1992, 1993 or 1994, were assessed when 16–19 years old. Parents scored school enrolment between the age of 4–18 years, general characteristics and the levels of intellectual disability using the Dutch Social Competence Rating Scale. Associations between disability and years in mainstream school were assessed by ordinal logistic regression, adjusting for sex and parental education. Results: We collected data from 170 boys and 152 girls (response 63%); mean age 18.3 years (ranges 16.8–19.9). Intellectual disability was mostly moderate (43%). Most children (74%) entered mainstream education between 4 and 6 years of age. At 13 years 17% was in mainstream school and 7% stayed in up to 16 years. From the age of 8 years onwards the majority was in special education, while 6% never attended school. Girls were more often in mainstream school and stayed in longer. Level of disability was significantly associated with number of years in mainstream education. Conclusion: Three out of four Dutch children with DS entered mainstream primary education, however late entry and high dropout are common. [ABSTRACT FROM AUTHOR]

Background: For health care performance indicators (PIs) to be reliable, data underlying the PIs are required to be complete, accurate, consistent and reproducible. Given the lack of regulation of the data-systems used in the Netherlands, and the self-report based indicator scores, one would expect heterogeneity with respect to the data collection and the ways indicators are computed. This might affect the reliability and plausibility of the nationally reported scores. Methods: We aimed to investigate the extent to which local hospital data collection and indicator computation strategies differ and how this affects the plausibility of self-reported indicator scores, using survey results of 42 hospitals and data of the Dutch national quality database. Results: The data collection and indicator computation strategies of the hospitals were substantially heterogenic. Moreover, the Hip and Knee replacement PI scores can be regarded as largely implausible, which was, to a great extent, related to a limited (computerized) data registry. In contrast, Breast Cancer PI scores were more plausible, despite the incomplete data registry and limited data access. This might be explained by the role of the regional cancer centers that collect most of the indicator data for the national cancer registry, in a standardized manner. Hospitals can use cancer registry indicator scores to report to the government, instead of their own locally collected indicator scores. Conclusions: Indicator developers, users and the scientific field need to focus more on the underlying (heterogenic) ways of data collection and conditional data infrastructures. Countries that have a liberal software market and are aiming to implement a self-report based performance indicator system to obtain health care transparency, should secure the accuracy and precision of the heath care data from which the PIs are calculated.Moreover, ongoing research and development of PIs and profound insight in the clinical practice of data registration is warranted. [ABSTRACT FROM AUTHOR]

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Copyright of Population (1634-2941) is the property of Institut National d'Etudes Demographiques and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aim: To assess and compare the secular trend in age at menarche in Dutch girls (1955–2009) and girls from Turkish and Moroccan descent living in the Netherlands (1997–2009). Methods: Data on growth and maturation were collected in 20,867 children of Dutch, Turkish and Moroccan descent in 2009 by trained health care professionals. Girls, 9 years and older, of Dutch (n = 2138), Turkish (n = 282), and Moroccan (n = 295) descent were asked whether they had experienced their first period. We compared median menarcheal age in 2009 with data from the previous Dutch Nationwide Growth Studies in 1955, 1965, 1980 and 1997. Age specific body mass index (BMI) z-scores were calculated to assess differences in BMI between pre- and postmenarcheal girls in different age groups. Results: Median age at menarche in Dutch girls, decreased significantly from 13.66 years in 1955 to 13.15 years in 1997 and 13.05 years in 2009. Compared to Dutch girls there is a larger decrease in median age of menarche in girls of Turkish and Moroccan descent between 1997 and 2009. In Turkish girls age at menarche decreased from 12.80 to 12.50 years and in Moroccan girls from 12.90 to 12.60 years. Thirty-three percent of Turkish girls younger than 12 years start menstruating in primary school. BMI-SDS is significantly higher in postmenarcheal girls than in premenarcheal girls irrespective of age. Conclusion: There is a continuing secular trend in earlier age at menarche in Dutch girls. An even faster decrease in age at menarche is observed in girls of Turkish and Moroccan descent in the Netherlands. [ABSTRACT FROM AUTHOR]

Based on an in-depth, longitudinal case study involving the public employment services in the Netherlands, we provide a novel conceptual imagery of how pluralistic fields may evolve over time. Our study shows how multiple institutional logics remain in play after a dominant logic is settled in an organizational field. We uncover several factors that explain the process of temporary stability and change and focus especially on two factors — negative choice and deliberate ambiguity — that explain ongoing change. These factors solve the struggle between competing logics, but simultaneously sow the seeds for further subsequent change. This study contributes to the institutional logics perspective beyond competing logics to the study of how fields with plural logics evolve. [ABSTRACT FROM AUTHOR]