15 research outputs found
Rapport au savoir et professionnalisation en EPS : trois études de cas à l'IUFM Midi-Pyrénées
Assessment of rapidly advancing bone age during puberty on elbow radiographs using a deep neural network model
RETIRADO: ĂŤndice de valoraciĂłn osificativo: EbrĂ-metacarpofalángico en serie longitudinal aragonesa (Andrea Prader)
Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study
Assessment of skeletal maturity using the calcification stages of permanent mandibular teeth
Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study
Background: Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents’ perceptions of post-discharge healthcare for their children born very preterm in a European multi-country cohort study. Methods: Data come from a 5-year follow-up of an area-based cohort of births <32 weeks’ gestation in 19 regions from 11 European countries. Perinatal data were collected from medical records and 5-year data from parent-report questionnaires. Parents rated post-discharge care related to their children’s preterm birth (poor/fair/good/excellent) and provided free-text suggestions for improvements. We analyzed sociodemographic and medical factors associated with poor/fair ratings, using inverse probability weights to adjust for attrition bias, and assessed free-text responses using thematic analysis. Results: Questionnaires were returned for 3635 children (53.8% response rate). Care was rated as poor/fair for 14.2% [from 6.1% (France) to 31.6% (Denmark)]; rates were higher when children had health or developmental problems (e.g. cerebral palsy (34.4%) or epilepsy (36.9%)). From 971 responses, 4 themes and 25 subthemes concerning care improvement were identified. Conclusions: Parents’ experiences provide guidance for improving very preterm children’s post-discharge care; this is a priority for children with health and developmental problems as parental dissatisfaction was high. Impact: In a European population-based very preterm birth cohort, parents rated post-discharge healthcare as poor or fair for 14.2% of children, with a wide variation (6.1–31.6%) between countries.Dissatisfaction was reported in over one-third of cases when children had health or developmental difficulties, such as epilepsy or cerebral palsy.Parents’ free-text suggestions for improving preterm-related post-discharge healthcare were similar across countries; these focused primarily on better communication with parents and better coordination of care.Parents’ lived experiences are a valuable resource for understanding where care improvements are needed and should be included in future research
A clinical study of 31 individuals with midline facial defects with hypertelorism and a guideline for follow-up Estudo clĂnico de 31 indivĂduos com defeitos de linha mĂ©dia facial com hipertelorismo e diretrizes para seguimento clĂnico
In order to contribute to clinical delineation of midline facial defects with hypertelorism (MFDH) and to etiologic diagnosis of the isolated form, 31 patients with MFDH unaffected by known syndromic associations were evaluated. Group A included patients personally examined by the authors, while Group B included those previously evaluated by other geneticists. Among the 14 patients from Group A, there were 7 with distinct pictures of multiple congenital anomalies. In Group B, 5 of the 17 patients also exhibited a distinct pattern of defects. Among isolated MFDH, there was association with anomalies of the skull and facial bones (13/14), otorhinologic (11/16), central nervous system (9/16), and ocular (6/7), and audiologic (3/16); 1/3 of the cases had a relevant gestational intercurrences. Isolated FNM may have involvement of environmental components in some cases; the possibility of a syndromic picture should be extensive investigated. Follow-up of such patients must include the examinations herein performed.<br>Objetivando contribuir com o delineamento clĂnico de defeitos de linha mĂ©dia facial com hipertelorismo (DLMFH) e com o diagnĂłstico etiolĂłgico das formas isoladas, foram avaliados 31 indivĂduos com DLMFH sem condições clĂnicas definidas. O Grupo A constituiu-se de pacientes examinados pessoalmente e o Grupo B, inicialmente, por outro geneticista. Entre os 14 pacientes do Grupo A, detectou-se 7 novos quadros de anomalias mĂşltiplas (AM). No Grupo B, 5 dos 17 pacientes exibiram um quadro clĂnico Ăşnico e peculiar. Nos casos de DLMFH isolados, detectou-se associação com anomalias de ossos de crânio e face (13/14), otorrinolaringolĂłgicas (11/16), de sistema nervoso central (9/16), oculares (6/7), e audiolĂłgicas (3/16); houve antecedentes gestacionais relevantes em 1/3. Existem evidĂŞncias de envolvimento de fatores ambientais em parte dos casos de formas isoladas de DLMFH, devendo-se atentar para a possibilidade de um quadro distinto de AM. Todas as investigações realizadas sĂŁo Ăşteis para avaliação e seguimento clĂnico