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1.
J Neurooncol ; 145(1): 177-184, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31522324

RESUMO

INTRODUCTION: Diffuse intrinsic pontine glioma (DIPG) is a rare clinically, neuro-radiologically, and molecularly defined malignancy of the brainstem with a median overall survival of approximately 11 months. Our aim is to evaluate the current tendency for its treatment in Europe in order to develop (inter)national consensus guidelines. METHODS: Healthcare professionals specialized in DIPG were asked to fill in an online survey with questions regarding usual treatment strategies at diagnosis and at disease progression in their countries and/or their centers, respectively. RESULTS: Seventy-four healthcare professionals responded to the survey, of which 87.8% were pediatric oncologists. Only 13.5% of the respondents biopsy all of their patients, 41.9% biopsy their patients infrequently. More than half of the respondents (54.1%) treated their patients with radiotherapy only at diagnosis, whereas 44.6% preferred radiotherapy combined with chemotherapy. When the disease progresses, treatment strategies became even more diverse, and the tendency for no treatment increased from 1.4% at diagnosis to 77.0% after second progression. 36.5% of the healthcare professionals treat children younger than 3 years differently than older children at diagnosis. This percentage decreased, when the disease progresses. Most of the participants (51.4%) included less than 25% of their patients in clinical trials. CONCLUSION: This survey demonstrates a large heterogeneity of treatment regimens, especially at disease progression. We emphasize the need for international consensus guidelines for the treatment of DIPG, possible by more collaborative clinical trials.

2.
J Neurooncol ; 132(2): 255-266, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-28110411

RESUMO

Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time for international collaboration in DIPG research, to provide new hope for children, parents and medical professionals fighting DIPG. In a first step towards collaboration, in 2011, a network of biologists and clinicians working in the field of DIPG was established within the European Society for Paediatric Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG Network. By bringing together biomedical professionals and parents as patient representatives, several collaborative DIPG-related projects have been realized. With help from experts in the fields of information technology, and legal advisors, an international, web-based comprehensive database was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence Interval (CI) 5.6-6.4 months) and the median overall survival is 11.0 months (95% CI 10.5-11.5 months). At two and five years post-diagnosis, 10 and 2% of patients are alive, respectively. The establishment of the SIOPE DIPG Network and SIOPE DIPG Registry means a paradigm shift towards collaborative research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG.


Assuntos
Neoplasias do Tronco Encefálico/diagnóstico por imagem , Glioma/diagnóstico por imagem , Serviços de Informação , Cooperação Internacional , Imagem por Ressonância Magnética , Sistema de Registros , Criança , Pré-Escolar , Europa (Continente) , Feminino , Humanos , Processamento de Imagem Assistida por Computador , Masculino , Ponte/diagnóstico por imagem , Adulto Jovem
3.
Lijec Vjesn ; 136(11-12): 346-9, 2014.
Artigo em Servo-Croata (Latino) | MEDLINE | ID: mdl-25647996

RESUMO

Chronically ill children nowdays in developed countries are more prevalent than before, and thanks to modern therapeutic modalities more children are surviving into adulthood. Increased survival cannot be assumed to be associated with increased quality of life. With the chronically ill child holistic approach is important, which incorporates not only realisation of the highest possible standards in diagnostics and treatment, but also special care for disease prevention. All this is very important in so called integrative approach in the care of a chronically ill child, with the aim of achieving as high as possible quality of life and complete social integration. At the 14th Preventive Pediatrics Symposium, which took place in Skrad, June 1' 2013, from preventive standpoint, the following chronic childhood illnesses were discussed: attention deficit hyperactivity disorder--ADHD, migraine, thyroid gland diseases, leukemia, cystic fibrosis, chronic renal disease, chronic inflammatory liver disease, chronic inflammatory bowel disease, juvenile idiopathic arthritis, and chronic otitis media with effusion. It is emphasized that talking about a disease prevention, there are three levels of it--primary, second- ary and tertiary prevention: how to avoid occurrence of disease, how to diagnose and treat existent disease in early stages, before it causes significant morbidity, and finally how to reduce the negative impact of existent disease by restoring function and reducing disease-related complications--how to improve quality of life of children with chronic diseases. Quaternary prevention describes methods to mitigate or avoid results of unnecessary or excessive interventions of the health system. An important process is also transition of care from child-oriented to adult-oriented care. Adults with chronic health conditions should continue to be evaluated periodically for possible late consequences of their childhood illness and previ- ous medical treatments.


Assuntos
Doença Crônica/prevenção & controle , Pediatria , Serviços Preventivos de Saúde/organização & administração , Pesquisa Biomédica , Criança , Humanos , Qualidade de Vida
4.
Lijec Vjesn ; 135(7-8): 213-8, 2013.
Artigo em Servo-Croata (Latino) | MEDLINE | ID: mdl-23991491

RESUMO

Chronic diseases in childhood have become an important priority, especially in developed countries, because of higher prevalence, relatively and absolutely. Besides that, inappropriate procedures a chronically ill child can result in child's growth and development disorder. According to literature data, 15-20% of children have chronic disease with the impact on their physical, mental and emotional status. Disease prevention strategies are described at the primary, secondary and tertiary level: how to avoid occurrence of disease, how to diagnose and treat existent disease in early stages, before it causes significant morbidity, and finally how to reduce negative impact of existent disease by restoring function and reducing disease-related complications - how to improve quality of life of children with chronic diseases. The new term of quaternary prevention describes methods to mitigate or avoid results of unnecessary or excessive interventions in the health system. In this paper the authors present recent attitudes about chronic diseases prevention modalities in childhood, which, at the beggining of the 21st century, have become more intriguing and represent a new challenge for pediatric health care. Thus, from preventive standpoint, the following chronic illnesses are discussed: asthma, malignant diseases, autism, epilepsy, cerebral palsy, tuberculosis, diabetes type 1, congenital heart diseases, arterial hypertension, celiac disease, and eating disorders. These emphases are from the 13th Preventive Pediatrics Symposium, which took place in Skrad, June 2nd, 2012. Further activities are planned with the aim of continuation of health care furtherance for children with other chronic illnesses.


Assuntos
Doença Crônica/prevenção & controle , Pediatria , Qualidade de Vida , Criança , Pré-Escolar , Doença Crônica/epidemiologia , Humanos , Pediatria/estatística & dados numéricos , Prevalência
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