Access to Intrathecal Baclofen Treatment for Children with Cerebral Palsy in European Countries: An SCPE Survey Reveals Important Differences

Aim: The aim is to study access to intrathecal baclofen (ITB) for children with cerebral palsy (CP) in Europe, as an indicator of access to advanced care. Methods: Surveys were sent to CP registers, clinical networks, and pump manufacturers. Enquiries were made about ITB treatment in children born in 1990 to 2005 by sex, CP type, level of gross motor function classification system (GMFCS) and age at the start of treatment. Access to ITB was related to the country's gross domestic product (GDP) and % GDP spent on health. Results: In 2011 population-based data from Sweden, Norway, England, Portugal, Slovenia, and Denmark showed that 114 (3.4%) of 3,398 children with CP were treated with ITB, varying from 0.4 to 4.7% between centers. The majority of the children were at GMFCS levels IV-V and had bilateral spastic CP. In Sweden, dyskinetic CP was the most commonly treated subtype. Boys were more often treated with ITB than girls (p = 0.014). ITB was reported to be available for children with CP in 25 of 43 countries. Access to ITB was associated with a higher GDP and %GDP spent on health (p < 0.01). Updated information from 2019 showed remaining differences between countries in ITB treatment and sex difference in treated children was maintained. Conclusion: There is a significant difference in access to ITB for children with CP across Europe. More boys than girls are treated. Access to ITB for children with CP is associated with GDP and percent of GDP spent on health in the country.info:eu-repo/semantics/publishedVersio

Angular sensitivity of blowfly photoreceptors: intracellular measurements and wave-optical predictions

The angular sensitivity of blowfly photoreceptors was measured in detail at wavelengths λ = 355, 494 and 588 nm. The measured curves often showed numerous sidebands, indicating the importance of diffraction by the facet lens. The shape of the angular sensitivity profile is dependent on wavelength. The main peak of the angular sensitivities at the shorter wavelengths was flattened. This phenomenon as well as the overall shape of the main peak can be quantitatively described by a wave-optical theory using realistic values for the optical parameters of the lens-photoreceptor system. At a constant response level of 6 mV (almost dark adapted), the visual acuity of the peripheral cells R1-6 is at longer wavelengths mainly diffraction limited, while at shorter wavelengths the visual acuity is limited by the waveguide properties of the rhabdomere. Closure of the pupil narrows the angular sensitivity profile at the shorter wavelengths. This effect can be fully described by assuming that the intracellular pupil progressively absorbs light from the higher order modes. In light-adapted cells R1-6 the visual acuity is mainly diffraction limited at all wavelengths.

A new purple sulfur bacterium from saline littoral sediments, Thiorhodotvibrio winogradskyi gen. nov. and sp. nov.

Two strains of a new purple sulfur bacterium were isolated in pure culture from the littoral sediment of a saline lake (Mahoney Lake, Canada) and a marine microbial mat from the North Sea island of Mellum, respectively. Single cells were vibrioid-to spirilloid-shaped and motile by means of single polar flagella. Intracellular photosynthetic membranes were of the vesicular type. As photosynthetic pigments, bacteriochlorophyll a and the carotenoids lycopene, rhodopin, anhydrorhodovibrin, rhodovibrin and spirilloxanthin were present. Hydrogen sulfide and elemental sulfur were used under anoxic conditions for phototrophic growth. In addition one strain (06511) used thiosulfate. Carbon dioxide, acetate and pyruvate were utilized by both strains as carbon sources. Depending on the strain propionate, succinate, fumarate, malate, tartrate, malonate, glycerol or peptone may additionally serve as carbon sources in the light. Optimum growth rates were obtained at pH 7.2, 33 °C, 50 mol m-2 s-1 intensity of daylight fluorescent tubes and a salinity of 2.2–3.2% NaCl. During growth on sulfide, up to ten small sulfur globules were formed inside the cells. The strains grew microaerophilic in the dark and exhibited high specific respiration rates. No vitamins were required for growth. The DNA base composition was 61.0–62.4 mol% G+C. The newly isolated bacterium belongs to the family chromatiaceae and is described as a member of a new genus and species, Thiorhodovibrio winogradskyi gen. nov. and sp. nov. with the type strain SSP1, DSM No. 6702

An ontological approach to creating an Andean Weaving Knowledge Base

Andean textiles are products of one of the richest, oldest and continuous weaving traditions in the world. Understanding the knowledge and practice of textile production as a form of cultural heritage is particularly relevant in the Andean context due to erosion of clothing traditions, reuse of traditional textiles on commodities targeted at the tourism market, and loss of knowledge embedded in textile production. ``Weaving Communities of Practice'' was a pilot project that aimed to create a knowledge base of Andean weaving designed to contribute to curatorial practice and heritage policy. The research team gathered data on the chain of activities, instruments, resources, peoples, places and knowledge involved in the production of textiles, relating to over 700 textile samples. A major part of the project has been the modelling and representation of the knowledge of domain experts and information about the textile objects themselves in the form of an OWL ontology, and the development of a suite of search facilities to be supported by the ontology. This paper describes the research challenges faced in developing the ontology and search facilities, the methodology adopted, the design and implementation of the system, and the design and outcomes of a user evaluation of the system undertaken with a group of domain experts

Development of the rhopalial nervous system in Aurelia sp.1 (Cnidaria, Scyphozoa)

We examined the development of the nervous system in the rhopalium, a medusa-specific sensory structure, in Aurelia sp.1 (Cnidaria, Scyphozoa) using confocal microscopy. The rhopalial nervous system appears primarily ectodermal and contains neurons immunoreactive to antibodies against tyrosinated tubulin, taurine, GLWamide, and FMRFamide. The rhopalial nervous system develops in an ordered manner: the presumptive gravity-sensing organ, consisting of the lithocyst and the touch plate, differentiates first; the “marginal center,” which controls swimming activity, second; and finally, the ocelli, the presumptive photoreceptors. At least seven bilaterally arranged neuronal clusters consisting of sensory and ganglion cells and their neuronal processes became evident in the rhopalium during metamorphosis to the medusa stage. Our analysis provides an anatomical framework for future gene expression and experimental studies of development and functions of scyphozoan rhopalia

A proposed disability complexity scale to describe the multi-facted needs of disabled children and young people.

There are validated measures of functioning for disabled children but no recognised scale of complexity. Many disabled children have multi-faceted needs. All need to be addressed to achieve best participation and quality of life. Aim: To develop a scale of complexity that is easy to apply in a range of clinic settings, relevant to individual clinical care and service planning. Method : Data were analysed from a retrospective review of 8392 structured electronic clinic letters from 1999 children accessing the paediatric disability clinics in Sunderland, north-east England, June 2007-May 2012. The numbers of health conditions (C), technology dependencies (T), family- reported issues (F) and need for round the clock care (R) were calculated and compared for those with different conditions. Results : The 699 children with intellectual disabilities (ID) compared to the 1299 without ID had significantly more: Needs overall (mean 5.81, range 1-23 with ID; mean 2.22, range 0-19 without ID) Health conditions (mean 5.41, range 0-18 with ID; mean 2.40, range 0-12 without ID) Technology dependencies (mean 0.16, range 0-4 with ID; mean 0.03, range 0-2 without ID) Family reported issues (mean 0.53, range 0-5 with ID; mean 0.19; range 0-5 without ID) and were Need for round the clock care (mean 0.18, range 0-1 with ID; mean 0.02, range 0-1 without ID)p-value <0.0001 in all cases. Children with ID plus cerebral palsies and epilepsies had more than double the number of needs overall than those without. The group who died had the highest burden of needs overall (mean 15, p-value <0.05). Conclusion: A disability complexity scale has been proposed and field-tested. It is a practical way to quantify complexity in a way that identifies the resources required to care for individuals as well as to commission and design services for populations of disabled children and young people

‘Your Tube’: the role of different diets in children who are gastrostomy fed: protocol for a mixed methods exploratory sequential study

Introduction Increasing numbers of children require having all, or part, of their nutritional intake via gastrostomy. More parents are using home-blended meals to feed their children, with many reporting beneficial effects such as improved gastro-oesophageal reflux, less constipation and less distress in their child. This study aims to identify the important outcomes of tube feeding in this population, compare the safety, outcomes and resource use of those on a home-blended diet compared with a formula diet and assess feasibility of long-term follow-up of children recruited to this study. Methods and analyses This is a mixed methods study of children (aged 6 months to 18 years) who are gastrostomy feed dependent recruited via general, community and specialist paediatric and dietetic services. Workstream 1 (WS1): a qualitative study involving semistructured interviews with parents (n~20) and young people (n~5–10), and focus groups with health professionals (n~25), will provide evidence of appropriate outcome measures and the feasibility/acceptability of proposed data collection methods for WS2. It will gather data on: desired outcomes of gastrostomy feeding, variability in diets and reasons; use of oral feeding; perceived benefits of the alternative diets, resources associated with gastrostomy feeding and safety issues. Data will be analysed using thematic analysis. WS2: a cohort study of 300 children who are gastrostomy fed. Data will be collected at months 0, 9 and 18 from parents, children (if appropriate) and clinicians using standardised measures and questionnaires developed specifically for the study. Data collected will include gastrointestinal symptoms, health and other outcomes (child, parent), dietary intake, anthropometry, healthcare usage, safety outcomes and resource use. Outcomes in the home-blended and formula groups will be compared using appropriate multiple regression analyses. Ethics and dissemination The study has been approved by a research ethics committee (REC reference: 19/ YH/0028). Results will be disseminated through publications and presentations for professionals and families

Outcomes for gastrostomy‐fed children and their parents : qualitative findings from the ‘Your Tube’ study

Aim To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food). Method Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2–18y) represented included those on formula (n=11), blended-food (n=7), and mixed (n=2) diets. All had been tube-fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented. Results Participants identified a range of children’s outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube-fed. Time, sleep, and emotional health were regarded as most salient to understanding parents’ gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health. Interpretation Findings indicate a number of refinements to, and allow further specification of, the current ‘initial’ core outcome set for tube-fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed