The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4–18 years, with Marfan syndrome (MFS, n = 74), Loeys–Dietz syndrome (n = 8), molecular confirmed Ehlers–Danlos syndromes (n = 15), and hypermobile Ehlers–Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p < 0.001, d = 0.9) and Psychosocial sum scores (p = 0.024, d = 0.2), indicating decreased HRQoL. Similar findings were obtained for child-reported HRQoL. The parent-reported mental health of the HCTD-group showed significantly increased Total difficulties sum scores (p = 0.01, d = 0.3), indicating decreased mental health. While the male and female MFS- and hEDS-subgroups both reported decreased HRQoL, only the hEDS-subgroup reported decreased mental health. In conclusion, children and adolescents with HCTD report decreased HRQoL and mental health, with most adverse outcomes reported in children with hEDS and least in those with MFS. These findings call for systematic monitoring and tailored interventions.
Background: Honorary authorship refers to the practice of naming an individual who has made little or no contribution to a publication as an author. Honorary authorship inflates the output estimates of honorary authors and deflates the value of the work by authors who truly merit authorship. This manuscript presents the protocol for a systematic review that will assess the prevalence of five honorary authorship issues in health sciences. Methods: Surveys of authors of scientific publications in health sciences that assess prevalence estimates will be eligible. No selection criteria will be set for the time point for measuring outcomes, the setting, the language of the publication, and the publication status. Eligible manuscripts are searched from inception onwards in PubMed, Lens.org, and Dimensions.ai. Two calibrated authors will independently search, determine eligibility of manuscripts, and conduct data extraction. The quality of each review outcome for each eligible manuscript will be assessed with a 14-item checklist developed and piloted for this review. Data will be qualitatively synthesized and quantitative syntheses will be performed where feasible. Criteria for precluding quantitative syntheses were defined a priori. The pooled random effects double arcsine transformed summary event rates of five outcomes on honorary authorship issues with the pertinent 95% confidence intervals will be calculated if these criteria are met. Summary estimates will be displayed after back-transformation. Stata software (Stata Corporation, College Station, TX, USA) version 16 will be used for all statistical analyses. Statistical heterogeneity will be assessed using Tau2 and Chi2 tests and I2 to quantify inconsistency. Discussion: The outcomes of the planned systematic review will give insights in the magnitude of honorary authorship in health sciences and could direct new research studies to develop and implement strategies to address this problem. However, the validity of the outcomes could be influenced by low response rates, inadequate research design, weighting issues, and recall bias in the eligible surveys. Systematic review registration: This protocol was registered a priori in the Open Science Framework (OSF) link: https://osf.io/5nvar/.
De Haagse Hogeschool heeft 'Kwaliteit van het leven: technologie voor gezondheid' tot een van haar profileringsthema's benoemd. Daarmee wil zij inspelen op maatschappelijke behoeften en tevens bijdragen aan een reductie van de zorgkosten. Aansluiting wordt gezocht bij het topsectorenbeleid Life Sciences & Health en de Europese onderzoeks- en innovatieagenda voor 2020; the European Innovation Partnership on Active and Healthy Ageing.
Horse riding falls under the “Sport for Life” disciplines, where a long-term equestrian development can provide a clear pathway of developmental stages to help individuals, inclusive of those with a disability, to pursue their goals in sport and physical activity, providing long-term health benefits. However, the biomechanical interaction between horse and (disabled) rider is not wholly understood, leaving challenges and opportunities for the horse riding sport. Therefore, the purpose of this KIEM project is to start an interdisciplinary collaboration between parties interested in integrating existing knowledge on horse and (disabled) rider interaction with any novel insights to be gained from analysing recently collected sensor data using the EquiMoves™ system. EquiMoves is based on the state-of-the-art inertial- and orientational-sensor system ProMove-mini from Inertia Technology B.V., a partner in this proposal. On the basis of analysing previously collected data, machine learning algorithms will be selected for implementation in existing or modified EquiMoves sensor hardware and software solutions. Target applications and follow-ups include: - Improving horse and (disabled) rider interaction for riders of all skill levels; - Objective evidence-based classification system for competitive grading of disabled riders in Para Dressage events; - Identifying biomechanical irregularities for detecting and/or preventing injuries of horses. Topic-wise, the project is connected to “Smart Technologies and Materials”, “High Tech Systems & Materials” and “Digital key technologies”. The core consortium of Saxion University of Applied Sciences, Rosmark Consultancy and Inertia Technology will receive feedback to project progress and outcomes from a panel of international experts (Utrecht University, Sport Horse Health Plan, University of Central Lancashire, Swedish University of Agricultural Sciences), combining a strong mix of expertise on horse and rider biomechanics, veterinary medicine, sensor hardware, data analysis and AI/machine learning algorithm development and implementation, all together presenting a solid collaborative base for derived RAAK-mkb, -publiek and/or -PRO follow-up projects.
Co-creatie is steeds vaker de gebruikte aanpak bij het ontwikkelen van innovatieve diensten en producten in de zorg, waarbij beoogd wordt om het spanningsveld tussen stijgende zorgvraag en afnemend zorgaanbod te verminderen, zoals bij het proces van extramuralisering . Deze diensten en producten worden ontworpen door zorginnovatoren via co-creatietools en -methoden. Co-creatie bestaat niet alleen uit het betrekken van relevante stakeholders in het ontwerpproces via creatieve methoden, maar ook uit het beschouwen van specifieke omgevingselementen (zowel sociaal als fysiek) en het continu oog hebben voor de complexe zorgprocessen waar de innovaties in ingebed moeten worden. Hoe dit precies moet, is bij zorginnovatoren vaak onbekend. Juist in de extramuralisering van de zorg is innoveren vanuit een systemisch perspectief essentieel aangezien er dan juist grote (vaak onvoorspelbare) veranderingen in omgeving en processen zullen gaan optreden, zoals geïdentificeerd in het concept onderzoeks- en innovatieprogramma Co-Creating Health, van de topsectoren Life Sciences & Health en Creatieve Industrie. Doel is om in een kleinschalig project van vijf maanden de basis te leggen voor een systemische ontwerptoolkit voor extramuralisering in de zorg, waarvoor bestaande kennis uit eerdere zorginnovatieprojecten wordt geïntegreerd. In een vervolgproject kan e.e.a. opgeschaald worden naar zorgcontexten in bredere zin (en/of preventie) Op basis van een systematische review van uitgevoerde co-creatie in de zorgprojecten (feb en maart ’18), aangevuld met literatuuronderzoek m.b.t. procesanalyse en systemische methoden wordt een lijst van “werkzame toolkitelementen” geformuleerd die wordt gevalideerd door experts werkzaam bij ontwerpbureaus voor de zorg (april en mei ’18). Tot slot wordt een aantal conceptrichtingen m.b.t. vorm (al dan niet digitaal) en inhoud (bijv. kaartenset, mock-uproom of game) ontwikkeld (juni ‘18) en wordt op een vervolgonderzoeksaanvraag (bijvoorbeeld voor SIA) geanticipeerd om de toolkit(s) daadwerkelijk te kunnen gaan maken.
Effectiveness of Supported Education for students with mental health problems, an experimental study.The onset of mental health problems generally occurs between the ages of 16 and 23 – the years in which young people follow postsecondary education, which is a major channel in ourso ciety to prepare for a career and enhance life goals. Several studies have shown that students with mental health problems have a higher chance of early school leaving. Supported Education services have been developed to support students with mental health to remain at school. The current project aims to study the effect of an individually tailored Supported Education intervention on educational and mental health outcomes of students with mental health problems at a university of applied sciences and a community college. To that end, a mixed methods design will be used. This design combines quantitative research (Randomized Controlled Trial) with qualitative research (focus groups, monitoring, interviews). 100 students recruited from the two educational institutes will be randomly allocated to either the intervention or control group.
