Objective: To explore the nature and extent of possible residual complaints among Dutch hypothyroid patients using thyroid replacement therapy, we initiated a comprehensive study measuring health-related quality of life (QoL), daily functioning, and hypothyroidism-associated symptoms in patients and control persons. Methods: An online survey measuring thyroid-specific QoL (ThyPRO), daily functioning, and hypothyroidismassociated symptoms (ThySHI) was distributed among treated hypothyroid patients and control individuals. The advertising text was formulated in an open-ended manner. Patients also provided their most recent thyroid blood values and their thyroid medication. Results: There was a large-sized impairment of QoL (Cohen’s d = 1.04, +93 % ThyPRO score) in hypothyroid patients on thyroid replacement therapy (n = 1195) as compared to controls (n = 236). Daily functioning was significantly reduced i.e., general health (-38 %), problems with vigorous- (+64 %) and moderate activities (+77 %). Almost 80 % of patients reported having complaints despite thyroid medication and in-range thyroid blood values, with 75 % expressing a desire for improved treatment options for hypothyroidism (total n = 1194). Hypothyroid patients experienced 2.8 times more intense hypothyroidism-associated symptoms than controls (n = 865, n = 203 resp). Patients’ median reported serum concentrations were: TSH 0.90 mU/L, FT4 17.0 pmol/L, and FT3 2.67 pmol/L, with 52 % having low T3 levels (<3.1 pmol/L). The QoL was not found to be related to age, sex, BMI, menopausal status, stress, serum thyroid parameters, the origin and duration of hypothyroidism, the type of thyroid medication, or the LT4 dose used. Conclusions: Our study revealed major reductions in quality of life and daily functioning, and nearly three times more intense hypothyroidism-associated symptoms in treated hypothyroid patients as compared to controls, despite treatment and largely in-range serum TSH/FT4 concentrations. The QoL was not associated with serum thyroid parameters. We recommend future research into the origin of persisting complaints and the development of improved treatment modalities for hypothyroidism.
Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
MULTIFILE
Objective:The objective of this scoping review is threefold: (1) to describe outcomes of and determinants for physical functioning in pediatric intensive care unit (PICU) survivors evaluated during and/or after their PICU stay, (2) to provide an overview how physical functioning and its associated determinants in this population are reported, measured and classified in accordance with the International classification of Functioning, Disability and Health-Children and Youth framework (ICF-CY) components and (3) to synthesize key gaps in knowledge and research and clinical recommendations related to our review questions.Introduction:Optimal physical functioning in children is of major importance in their developmental trajectories and for the prevention and recovery of health problems across lifespan. PICU children are at high risk of poor physical functioning during and after critical illness. A recent overview of the literature, concerning evaluation of physical functioning in PICU survivors according to the ICF-CY components, is lacking. Inclusion criteria:This review includes empirical studies reporting outcomes and determinants of physical functioning in PICU survivors evaluated during and/or after PICU stay. All English language studies reporting empirical data will be included with no restrictions set on the types of study designs used.Methods:This review will be conducted in accordance with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) statement. To locate studies eligible for inclusion, the electronic databases Pubmed, EMBASE, CINAHL and Cochrane Library will be searched from the earliest records to October 2019. Study selection will be performed by two independent reviewers. Covidence software will be used to screen titles and abstracts as well as the full-text of included studies. Data extraction will be conducted using a customized form. The extracted data will be presented in diagrammatic or tabular form with an accompanying narrative summary.
266 woorden Op school kan de situatie zich voordoen dat de leerkracht onvoldoende tegemoet kan komen aan de extra ondersteuning die leerlingen met autisme nodig hebben. De klas kan te groot zijn, de leerkracht kan handelingsverlegen zijn, etc.. In dit projectplan wordt onderbouwd wat de relevantie is voor de dagelijkse praktijk van de leerkracht en de leerling met autisme en daaraan gerelateerde problemen. Tevens wordt onderbouwd waarom beeldende therapie theoretisch en empirisch kan bijdragen als creatieve oplossing voor kinderen met aan autisme gerelateerde problemen die in de klas extra aandacht vragen. Deze kinderen hebben een andere manier van informatie verwerken, kunnen zich vaak verbaal moeilijk uiten en hebben vaak sociale problemen. Deze kinderen lopen risico op verslavingsproblematiek (33%) en eenzaamheid, angst en depressie op volwassen leeftijd (80%). Kunstvormen in een leeromgeving bieden andere mogelijkheden voor kinderen om zich te uiten en om samen te werken. In dit projectplan wordt beschreven waarom het zinvol is te onderzoeken wat de effectiviteit is van beeldende therapie voor kinderen met autisme in primair (speciaal) onderwijs, ter preventie van risicogedrag. Het behandelprogramma ‘Zelf in beeld, beeldende therapie voor kinderen met autisme (bijlage 1) lijkt veelbelovende resultaten op te leveren (Schweizer, 2020). Om een indruk van de resultaten van praktijkgericht onderzoek naar ‘Zelf in beeld’ te krijgen kunt u de korte animatie bekijken (3 min): https://youtu.be/cVAAzRHZnb0 In dit vervolgproject wordt verkend in hoeverre ‘Zelf in beeld’ van toegevoegde waarde van kan zijn voor kind, leerkracht en ouders, binnen de setting van Speciaal Onderwijs. Dit project heeft een innovatief karakter omdat er een nieuwe vorm van (preventief) werken binnen passend onderwijs wordt toegepast en onderzocht.
Collaborative networks for sustainability are emerging rapidly to address urgent societal challenges. By bringing together organizations with different knowledge bases, resources and capabilities, collaborative networks enhance information exchange, knowledge sharing and learning opportunities to address these complex problems that cannot be solved by organizations individually. Nowhere is this more apparent than in the apparel sector, where examples of collaborative networks for sustainability are plenty, for example Sustainable Apparel Coalition, Zero Discharge Hazardous Chemicals, and the Fair Wear Foundation. Companies like C&A and H&M but also smaller players join these networks to take their social responsibility. Collaborative networks are unlike traditional forms of organizations; they are loosely structured collectives of different, often competing organizations, with dynamic membership and usually lack legal status. However, they do not emerge or organize on their own; they need network orchestrators who manage the network in terms of activities and participants. But network orchestrators face many challenges. They have to balance the interests of diverse companies and deal with tensions that often arise between them, like sharing their innovative knowledge. Orchestrators also have to “sell” the value of the network to potential new participants, who make decisions about which networks to join based on the benefits they expect to get from participating. Network orchestrators often do not know the best way to maintain engagement, commitment and enthusiasm or how to ensure knowledge and resource sharing, especially when competitors are involved. Furthermore, collaborative networks receive funding from grants or subsidies, creating financial uncertainty about its continuity. Raising financing from the private sector is difficult and network orchestrators compete more and more for resources. When networks dissolve or dysfunction (due to a lack of value creation and capture for participants, a lack of financing or a non-functioning business model), the collective value that has been created and accrued over time may be lost. This is problematic given that industrial transformations towards sustainability take many years and durable organizational forms are required to ensure ongoing support for this change. Network orchestration is a new profession. There are no guidelines, handbooks or good practices for how to perform this role, nor is there professional education or a professional association that represents network orchestrators. This is urgently needed as network orchestrators struggle with their role in governing networks so that they create and capture value for participants and ultimately ensure better network performance and survival. This project aims to foster the professionalization of the network orchestrator role by: (a) generating knowledge, developing and testing collaborative network governance models, facilitation tools and collaborative business modeling tools to enable network orchestrators to improve the performance of collaborative networks in terms of collective value creation (network level) and private value capture (network participant level) (b) organizing platform activities for network orchestrators to exchange ideas, best practices and learn from each other, thereby facilitating the formation of a professional identity, standards and community of network orchestrators.
A fast growing percentage (currently 75% ) of the EU population lives in urban areas, using 70% of available energy resources. In the global competition for talent, growth and investments, quality of city life and the attractiveness of cities as environments for learning, innovation, doing business and job creation, are now the key parameters for success. Therefore cities need to provide solutions to significantly increase their overall energy and resource efficiency through actions addressing the building stock, energy systems, mobility, and air quality.The European Energy Union of 2015 aims to ensure secure, affordable and climate-friendly energy for EU citizens and businesses among others, by bringing new technologies and renewed infrastructure to cut household bills, create jobs and boost growth, for achieving a sustainable, low carbon and environmentally friendly economy, putting Europe at the forefront of renewable energy production and winning the fight against global warming.However, the retail market is not functioning properly. Many household consumers have too little choices of energy suppliers and too little control over their energy costs. An unacceptably high percentage of European households cannot afford to pay their energy bills. Energy infrastructure is ageing and is not adjusted to the increased production from renewables. As a consequence there is still a need to attract investments, with the current market design and national policies not setting the right incentives and providing insufficient predictability for potential investors. With an increasing share of renewable energy sources in the coming decades, the generation of electricity/energy will change drastically from present-day centralized production by gigawatt fossil-fueled plants towards decentralized generation, in cities mostly by local household and district level RES (e.g PV, wind turbines) systems operating in the level of micro-grids. With the intermittent nature of renewable energy, grid stress is a challenge. Therefore there is a need for more flexibility in the energy system. Technology can be of great help in linking resource efficiency and flexibility in energy supply and demand with innovative, inclusive and more efficient services for citizens and businesses. To realize the European targets for further growth of renewable energy in the energy market, and to exploit both on a European and global level the expected technological opportunities in a sustainable manner, city planners, administrators, universities, entrepreneurs, citizens, and all other relevant stakeholders, need to work together and be the key moving wheel of future EU cities development.Our SolutionIn the light of such a transiting environment, the need for strategies that help cities to smartly integrate technological solutions becomes more and more apparent. Given this condition and the fact that cities can act as large-scale demonstrators of integrated solutions, and want to contribute to the socially inclusive energy and mobility transition, IRIS offers an excellent opportunity to demonstrate and replicate the cities’ great potential. For more information see the HKU Smart Citieswebsite or check out the EU-website.
