INTRODUCTION: Early and lifelong treatment is essential in patients with familial hypercholesterolaemia (FH) due to genetically elevated low-density lipoprotein cholesterol (LDL-C) from the first years of life. In women with FH, lipid-lowering treatment is interrupted during childbearing years due to contraindication of the medication during conception, pregnancy and breastfeeding. However, little is known about the impact of breastfeeding on lipid profile and other risk markers for atherosclerotic cardiovascular disease (ASCVD) in women with FH compared with women without hypercholesterolaemia, and to what extent statins transfer into breast milk.We aim to investigate (1) the association between breastfeeding and serum lipid profile in women with and without FH; (2) the association between breastfeeding and other ASCVD risk markers in women with and without FH and (3) the concentration of statins in breast milk of women with FH. METHODS AND ANALYSIS: FH-FEMINA is a prospective study aiming to include 50 women with FH in Norway, the Netherlands and the Czech Republic. Additionally, 20 women without hypercholesterolaemia will be enrolled as a control group in Norway. Women will be included at the first study visit in gestational week 36, and follow-up visits will be scheduled at 2-4 weeks, and at 3, 6, 9 and 12 months postpartum. Information on lifestyle factors, treatment history and current and previous pregnancies will be collected. At each visit, a non-fasting blood sample, breast milk sample and information on diet, body mass index and blood pressure will be collected. Additional blood samples will be collected from the women with FH at 2, 4, 5, 7, 8, 10 and 11 months postpartum for as long as they are breastfeeding. At (re-)initiation of statin treatment, breast milk samples from women with FH will be collected for drug concentration measurements. ETHICS AND DISSEMINATION: Ethical approval will be obtained prior to study start in all three countries. Participants will be informed about the study and receive ample time to ask questions before the informed consent form is signed. The findings from this study will be disseminated to healthcare professionals, researchers and patients via peer-reviewed scientific article(s), conferences, patient organisations and social media. TRIAL REGISTRATION NUMBER: NCT05367310.
- MeSH
- Biomarkers blood MeSH
- Adult MeSH
- Hyperlipoproteinemia Type II * blood drug therapy complications MeSH
- Cardiovascular Diseases * MeSH
- Breast Feeding * MeSH
- Humans MeSH
- Lipids * blood MeSH
- Milk, Human * chemistry metabolism MeSH
- Prospective Studies MeSH
- Heart Disease Risk Factors MeSH
- Hydroxymethylglutaryl-CoA Reductase Inhibitors * therapeutic use MeSH
- Check Tag
- Adult MeSH
- Humans MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Clinical Trial Protocol MeSH
- Geographicals
- Czech Republic MeSH
- Netherlands MeSH
- Norway MeSH
Molecular techniques like metabarcoding, while promising for exploring diversity of communities, are often impeded by the lack of reference DNA sequences available for taxonomic annotation. Our study explores the benefits of combining targeted DNA barcoding and morphological taxonomy to improve metabarcoding efficiency, using beach meiofauna as a case study. Beaches are globally important ecosystems and are inhabited by meiofauna, microscopic animals living in the interstitial space between the sand grains, which play a key role in coastal biodiversity and ecosystem dynamics. However, research on meiofauna faces challenges due to limited taxonomic expertise and sparse sampling. We generated 775 new cytochrome c oxidase I DNA barcodes from meiofauna specimens collected along the Netherlands' west coast and combined them with the NCBI GenBank database. We analysed alpha and beta diversity in 561 metabarcoding samples from 24 North Sea beaches, a region extensively studied for meiofauna, using both the enriched reference database and the NCBI database without the additional reference barcodes. Our results show a 2.5-fold increase in sequence annotation and a doubling of species-level Operational Taxonomic Units (OTUs) identification when annotating the metabarcoding data with the enhanced database. Additionally, our analyses revealed a bell-shaped curve of OTU richness across the intertidal zone, aligning more closely with morphological analysis patterns, and more defined community dissimilarity patterns between supralittoral and intertidal sites. Our research highlights the importance of expanding molecular reference databases and combining morphological taxonomy with molecular techniques for biodiversity assessments, ultimately improving our understanding of coastal ecosystems.
- MeSH
- Invertebrates genetics classification MeSH
- Biodiversity MeSH
- Ecosystem MeSH
- Bathing Beaches MeSH
- Metagenomics methods MeSH
- Electron Transport Complex IV * genetics MeSH
- DNA Barcoding, Taxonomic * methods MeSH
- Animals MeSH
- Check Tag
- Animals MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Netherlands MeSH
- North Sea MeSH
BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.
- MeSH
- Dementia * MeSH
- Humans MeSH
- Caregivers * psychology MeSH
- Terminal Care MeSH
- Nursing Homes * organization & administration MeSH
- Advance Care Planning * MeSH
- Decision Making MeSH
- Aged MeSH
- Check Tag
- Humans MeSH
- Male MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
- Geographicals
- Czech Republic MeSH
- Ireland MeSH
- Italy MeSH
- Canada MeSH
- Netherlands MeSH
- United Kingdom MeSH
OBJECTIVES: Despite growing interest, the cost-effectiveness of eHealth interventions for supporting quality of life of people with dementia and their caregivers remains unclear. This study evaluated the cost-effectiveness of the FindMyApps intervention, compared to digital care-as-usual. FindMyApps aims to help people with dementia and their caregivers find and learn to use tablet apps that may support social participation and self-management of people with dementia and sense of competence of caregivers. METHOD: A randomised controlled trial (Netherlands Trial Register NL8157) was conducted, including people with mild cognitive impairment (MCI) or mild dementia and their informal caregivers (FindMyApps n = 76, digital care-as-usual n = 74). Outcomes for people with MCI/dementia were Quality-Adjusted Life-Years (QALYs), calculated from EQ-5D-5L data and the Dutch tariff for utility scores, social participation (Maastricht Social Participation Profile) and quality of life (Adult Social Care Outcomes Toolkit), and for caregivers, QALYs and sense of competence (Short Sense of Competence Questionnaire). Societal costs were calculated using data collected with the RUD-lite instrument and the Dutch costing guideline. Multiple imputation was employed to fill in missing cost and effect data. Bootstrapped multilevel models were used to estimate incremental total societal costs and incremental effects between groups which were then used to calculate Incremental Cost-Effectiveness Ratios (ICERs). Cost-effectiveness acceptability curves were estimated. RESULTS: In the FindMyApps group, caregiver SSCQ scores were significantly higher compared to care-as-usual, n = 150, mean difference = 0.75, 95% CI [0.14, 1.38]. Other outcomes did not significantly differ between groups. Total societal costs for people with dementia were not significantly different, n = 150, mean difference = €-774, 95%CI [-2.643, .,079]. Total societal costs for caregivers were significantly lower in the FindMyApps group compared to care-as-usual, n = 150, mean difference = € -392, 95% CI [-1.254, -26], largely due to lower supportive care costs, mean difference = €-252, 95% CI [-1.009, 42]. For all outcomes, the probability that FindMyApps was cost-effective at a willingness-to-pay threshold of €0 per point of improvement was 0.72 for people with dementia and 0.93 for caregivers. CONCLUSION: FindMyApps is a cost-effective intervention for supporting caregivers' sense of competence. Further implementation of FindMyApps is warranted.
- MeSH
- Cost-Benefit Analysis * MeSH
- Dementia * therapy economics MeSH
- Cognitive Dysfunction therapy economics MeSH
- Quality of Life * MeSH
- Quality-Adjusted Life Years MeSH
- Middle Aged MeSH
- Humans MeSH
- Mobile Applications economics MeSH
- Caregivers * psychology economics MeSH
- Aged, 80 and over MeSH
- Aged MeSH
- Telemedicine * economics MeSH
- Social Participation MeSH
- Check Tag
- Middle Aged MeSH
- Humans MeSH
- Male MeSH
- Aged, 80 and over MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Randomized Controlled Trial MeSH
- Geographicals
- Netherlands MeSH
It is necessary for nursing staff to have adequate knowledge of malnutrition in older people in order to provide high quality care. This study was conducted to update the Knowledge of Malnutrition-Geriatric (KoM-G) questionnaire to fit different settings and to cross-culturally adapt it to the German, Czech, Dutch and Turkish languages. In Part 1 of the study, the KoM-G questionnaire was updated and adapted for use in different settings. Content validation of the KoM-G 2.0 was carried out in a Delphi study with 16 experts. The final KoM-G 2.0 questionnaire consists of 16 items with a Scale Content Validity Index/Average of 94.5%. In Part 2, the English KoM-G 2.0 was cross-culturally adapted into the German, Czech, Dutch and Turkish languages. In the pilot test, between 96.9% (The Netherlands) and 97.8% (Austria) of the nursing staff rated the items as understandable. The KoM-G 2.0 is an up-to-date questionnaire with a highly satisfactory Content Validity Index. It was cross-culturally adapted into the German, Czech, Dutch, and Turkish languages, and the understandability was high. At the moment, the necessary comprehensive psychometric testing of the KoM-G 2.0 is in process. Afterwards it can be used to compare nurses' knowledge between various countries and settings.
- MeSH
- Delphi Technique MeSH
- Adult MeSH
- Language MeSH
- Middle Aged MeSH
- Humans MeSH
- Malnutrition * diagnosis MeSH
- Translations MeSH
- Surveys and Questionnaires MeSH
- Psychometrics MeSH
- Reproducibility of Results MeSH
- Aged MeSH
- Cross-Cultural Comparison * MeSH
- Health Knowledge, Attitudes, Practice MeSH
- Check Tag
- Adult MeSH
- Middle Aged MeSH
- Humans MeSH
- Male MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Czech Republic MeSH
- Germany MeSH
- Netherlands MeSH
- Turkey MeSH
- MeSH
- History, 17th Century * MeSH
- Microscopy * history MeSH
- Check Tag
- History, 17th Century * MeSH
- Publication type
- Biography MeSH
- Historical Article MeSH
- Geographicals
- Netherlands MeSH
- MeSH
- Euthanasia, Active * MeSH
- Alzheimer Disease * MeSH
- Living Wills MeSH
- Humans MeSH
- Aged MeSH
- Legislation as Topic MeSH
- Check Tag
- Humans MeSH
- Aged MeSH
- Female MeSH
- Publication type
- Case Reports MeSH
- Geographicals
- Netherlands MeSH
OBJECTIVE: Access to family planning services is a human right that plays an essential role in society's health, particularly women's health. The COVID-19 pandemic has affected all aspects of human life including access to family planning services. Accordingly, the main goal of this study was to explore the experiences of women and service providers from the main challenges and obstacles of access to family planning services and abortion services in Bangladesh, Iran, and the Netherlands during the COVID-19 pandemic. METHODS: In this qualitative study, the data were collected through online, telephone, or in-person semi-structured interviews with key informants. Participants selected by purposive sampling method. The participants included women aged 15 to 49 (n = 63) and service providers (n = 54) in the 3 abovementioned countries. These individuals were included from October 2020 until December 2020. Conventional thematic analysis was employed to analyze the collected data. RESULTS: The main extracted themes were challenges (reduction of referral; disruption of access to services; insufficient knowledge; worries among staff; rising prices; and unavailability of some contraceptives), measures (time extension and visit scheduling; telephone, online, and door to door services; and support of the media) and recommendations (health facility improvements; free, online, and closer services; and ongoing trainings and awareness campaigns). CONCLUSION: The COVID-19 pandemic has affected family planning and reproductive health services in different ways and has uncovered existing inequalities in access to these services. However, in Iran, the reported challenges were also rooted in new population policies that have further limited access to family planning and abortion services.
- MeSH
- COVID-19 * epidemiology MeSH
- Abortion, Induced * MeSH
- Humans MeSH
- Pandemics MeSH
- Family Planning Services methods MeSH
- Pregnancy MeSH
- Check Tag
- Humans MeSH
- Pregnancy MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
- Geographicals
- Bangladesh MeSH
- Iran MeSH
- Netherlands MeSH
In response to escalating cases of serogroup W (MenW) invasive meningococcal disease (IMD), multiple countries introduced quadrivalent conjugate MenACWY vaccines into their national immunization programs (NIPs). Here, we summarize the real-world impact and vaccine effectiveness (VE) data of MenACWY-TT from Chile, England, the Netherlands, and Australia. Incidence rate reductions (IRRs) and VE from baseline to post-NIP period were extracted from publications or calculated. After the administration of a single dose of MenACWY-TT, substantial IRRs of MenCWY were observed across the countries in vaccine-eligible age groups (83%-85%) and via indirect protection in non-vaccine-eligible age groups (45%-53%). The impact of MenACWY-TT was primarily driven by MenW IRRs, as seen in vaccine-eligible age groups (65%-92%) and non-vaccine-eligible age groups (41%-57%). VE against MenW was reported in vaccine-eligible toddlers (92%) in the Netherlands and in vaccine-eligible adolescents/young adults (94%) in England. These real-world data support the implementation and continued use of MenACWY-TT in NIPs.
- MeSH
- Vaccines, Combined MeSH
- Humans MeSH
- Meningococcal Infections * epidemiology prevention & control MeSH
- Adolescent MeSH
- Young Adult MeSH
- Check Tag
- Humans MeSH
- Adolescent MeSH
- Young Adult MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
- Review MeSH
- Geographicals
- England MeSH
- Australia MeSH
- Netherlands MeSH
Luis Alcocer (Mexico), Christina Antza (Greece), Mustafa Arici (Turkey), Eduardo Barbosa (Brazil), Adel Berbari (Lebanon), Luís Bronze (Portugal), John Chalmers (Australia), Tine De Backer (Belgium), Alejandro de la Sierra (Spain), Kyriakos Dimitriadis (Greece), Dorota Drozdz (Poland), Béatrice Duly-Bouhanick (France), Brent M. Egan (USA), Serap Erdine (Turkey), Claudio Ferri (Italy), Slavomira Filipova (Slovak Republic), Anthony Heagerty (UK), Michael Hecht Olsen (Denmark), Dagmara Hering (Poland), Sang Hyun Ihm (South Korea), Uday Jadhav (India), Manolis Kallistratos (Greece), Kazuomi Kario (Japan), Vasilios Kotsis (Greece), Adi Leiba (Israel), Patricio López-Jaramillo (Colombia), Hans-Peter Marti (Norway), Terry McCormack (UK), Paolo Mulatero (Italy), Dike B. Ojji (Nigeria), Sungha Park (South Korea), Priit Pauklin (Estonia), Sabine Perl (Austria), Arman Postadzhian (Bulgaria), Aleksander Prejbisz (Poland), Venkata Ram (India), Ramiro Sanchez (Argentina), Markus Schlaich (Australia), Alta Schutte (Australia), Cristina Sierra (Spain), Sekib Sokolovic (Bosnia and Herzegovina), Jonas Spaak (Sweden), Dimitrios Terentes-Printzios (Greece), Bruno Trimarco (Italy), Thomas Unger (The Netherlands), Bert-Jan van den Born (The Netherlands), Anna Vachulova (Slovak Republic), Agostino Virdis (Italy), Jiguang Wang (China), Ulrich Wenzel (Germany), Paul Whelton (USA), Jiri Widimsky (Czech Republic), Jacek Wolf (Poland), Grégoire Wuerzner (Switzerland), Eugene Yang (USA), Yuqing Zhang (China).
- MeSH
- Hypertension * drug therapy MeSH
- Humans MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Europe MeSH
- France MeSH
- Italy MeSH
- Netherlands MeSH
- Spain MeSH
