Volumes d’activité et parcours de soin en cancérologie pédiatrique en France : analyse des données du programme de médicalisation des systèmes d’information

Hospital activity in paediatric cancerology was described on treatment type and hospital category, by care territories. Pathways of care were also studied, especially for ALL and CNS tumours.Hospital stays linked to cancer care from french hospital claim databases were studied in individuals below 25 on number of stays, breakdown by care territory, hospital category and treatment type. Pathways of care were studied during the first year after diagnosis.In 2012, 142208 stays were extracted for 16062 individual; 63798 for chemotherapy, 24413 for radiotherapy, 7714 for surgery, 2287 for palliative care and 46089 for other types of treatment; 109023 took place in a specialized hospital, 21429 in a proximity hospital and 13849 in another hospital category, this breakdown varied among territories and treatment types. Before 15 more stays took place in specialized centres. During the first year of care the median length of hospitalisation was 9 days (all cancers) and 95 days for ALL. More than 30% of individuals had to go to a hospital futher than 1 hour from their home.The observed organisation was in accordance to the theoretical framework, radiotherapy took place in specialized hospitals, a part of chemotherapy in proximity hospitals, and few stays were found elsewhere, especially before 15 where the framework is stricter. Pathways of care analysis showed the burden as measured by length of hospitalisation and distance from home.L’activité de cancérologie pédiatrique a été décrite par territoires selon les prises en charge et les types de centres. Le parcours de soin a été étudié, en particulier pour les LLA et les tumeurs du SNC.A partir des séjours du PMSI MCO en lien avec la prise en charge du cancer pour l’année 2013 avant 25 ans ont été étudiés le nombre de séjours, leur répartition selon le territoire d’OIR, la catégorie des établissements et le mode de prise en charge. L’analyse des parcours portait sur les séjours dans la première année après le diagnostic.En 2013, 142208 séjours ont été identifiés pour 16062 individus ; 63798 séjours de chimiothérapie, 24413 séjours de radiothérapie, 7714 séjours de chirurgie, 2287 séjours de soins palliatifs et 46089 séjours avec une autre prise en charge ; 109023 ont été effectués dans un centre spécialisé, 21429 dans un centre de proximité et 13849 dans d'autres centres, cette répartition variait selon les territoires et les prises en charge. Avant 15 ans la part des centres spécialisés était plus importante. Pendant la première année la médiane de journées d'hospitalisation était à 9 (tous cancers) et montait à 95 journées pour les LLA. Plus de 30% des individus effectuaient des séjours à plus d’une heure de leur domicile.Une organisation correspondant aux rôles décrits dans les textes a été retrouvée, avec la radiothérapie dans les centres spécialisés, une part de la chimiothérapie dans les centres de proximité, et peu d’activité en dehors de ces centres, surtout avant 15 ans où l’activité est la plus réglementée. L’analyse des parcours a montré le poids en terme de journées d’hospitalisation et de distance au domicile

Friedreich and dominant ataxias: quantitative differences in cerebellar dysfunction measurements

BACKGROUND: Sensitive outcome measures for clinical trials on cerebellar ataxias are lacking. Most cerebellar ataxias progress very slowly and quantitative measurements are required to evaluate cerebellar dysfunction. METHODS: We evaluated two scales for rating cerebellar ataxias: the Composite Cerebellar Functional Severity (CCFS) Scale and Scale for the Assessment and Rating of Ataxia (SARA), in patients with spinocerebellar ataxia (SCA) and controls. We evaluated these scales for different diseases and investigated the factors governing the scores obtained. All patients were recruited prospectively. RESULTS: There were 383 patients with Friedreich's ataxia (FRDA), 205 patients with SCA and 168 controls. In FRDA, 31% of the variance of cerebellar signs with the CCFS and 41% of that with SARA were explained by disease duration, age at onset and the shorter abnormal repeat in the FXN gene. Increases in CCFS and SARA scores per year were lower for FRDA than for SCA (CCFS index: 0.123±0.123 per year vs 0.163±0.179, P<0.001; SARA index: 1.5±1.2 vs 1.7±1.7, P<0.001), indicating slower cerebellar dysfunction indexes for FRDA than for SCA. Patients with SCA2 had higher CCFS scores than patients with SCA1 and SCA3, but similar SARA scores. CONCLUSIONS: Cerebellar dysfunction, as measured with the CCFS and SARA scales, was more severe in FRDA than in patients with SCA, but with lower progression indexes, within the limits of these types of indexes. Ceiling effects may occur at late stages, for both scales. The CCFS scale is rater-independent and could be used in a multicentre context, as it is simple, rapid and fully automated. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT02069509

Standardized Assessment of Hereditary Ataxia Patients in Clinical Studies.

BACKGROUND: Hereditary ataxias are a heterogeneous group of degenerative diseases of the cerebellum, brainstem, and spinal cord. They may present with isolated ataxia or with additional symptoms going beyond cerebellar deficits. There are an increasing number of clinical studies with the goal to define the natural history of these disorders, develop biomarkers, and investigate therapeutic interventions. Especially, early and preclinical disease stages are currently of particular interest. METHODS AND RESULTS: Evidence-based, we review standards for sampling and storage of biomaterials, clinical and neuropsychological assessment, as well as neurophysiology and neuroimaging and recommendations for standardized assessment of ataxia patients in multicenter studies. CONCLUSIONS: DNA, RNA, serum, and, if possible, cerebrospinal fluid samples should be processed following established standards. Clinical assessment in ataxia studies must include use of a validated clinical ataxia scale. There are several validated clinical ataxia scales available. There are no instruments that were specifically designed for assessing neuropsychological and psychiatric symptoms in ataxia disorders. We provide a list of tests that may prove valuable. Quantitative performance tests have the potential to supplement clinical scales. They provide additional objective and quantitative information. Posturography and quantitative movement analysis-despite valid approaches-require standardization before implemented in multicenter studies. Standardization of neurophysiological tools, as required for multicenter interventional trials, is still lacking. Future multicenter neuroimaging studies in ataxias should implement quality assurance measures as defined by the ADNI or other consortia. MRI protocols should allow morphometric analyses

Conséquences des maladies sur le fonctionnement : comparaisons hommes-femmes

Rapport dans le cadre de stage d'internat en santé publique à l'Ined, unité 5 (MSE

Prenatal and post-natal cost of small for gestational age infants: a national study

International audienc

Quantifiable evaluation of cerebellar signs in children

Objective: To validate, examine the internal validity, and adapt to children the electronic version of the composite cerebellar functional severity (CCFS) score. Methods: In this multicenter study, we compared the validated manual device with the new electronic version (n 46) and analyzed its kinetics in 146 patients with Friedreich ataxia through the EFACTS (European Friedreich's Ataxia Consortium for Translational Studies) network, 77 patients with spinocerebellar ataxia, and 48 controls. We validated the CCFS in cerebellar ataxias in healthy children (n 120) and children with Friedreich ataxia through the EFACTS network (n 33). Results: We showed that the electronic CCFS is a reliable replacement for the manual version (intraclass correlation coefficient: 0.98 [0.97-0.99]), and that the electronic CCFS is consistent when performed several times (0.92 [0.84-0.97]). Analysis of kinetics data showed an acceleration and irregularity that is not relevant compared with total speed. The CCFS was tested after modification in a population of patients with Friedreich ataxia between 8 and 19 years old, and showed similar values as adult patients with Friedreich ataxia (1.203 ± 0.125 vs 1.228 ± 0.167) and significantly higher values than controls of the same age (0.863 ± 0.042). Conclusions: The electronic CCFS is a quantified measurement of cerebellar ataxia independent of age, usable in individuals aged from 7 to 80 years. The automated nature of the electronic test device makes it reproducible between operators and centers, as well as easy to use.SCOPUS: ar.jinfo:eu-repo/semantics/publishe

Cost-effectiveness of acupuncture versus standard care for pelvic and low back pain in pregnancy: A randomized controlled trial

<div><p>Objective</p><p>To assess the cost-effectiveness of acupuncture for pelvic girdle and low back pain (PGLBP) during pregnancy.</p><p>Design</p><p>Pragmatic-open-label randomised controlled trial.</p><p>Setting</p><p>Five maternity hospitals</p><p>Population</p><p>Pregnant women with PGLBP</p><p>Method</p><p>1:1 randomization to standard care or standard care plus acupuncture (5 sessions by an acupuncturist midwife).</p><p>Main outcome measure</p><p>Efficacy: proportion of days with self-assessed pain by numerical rating scale (NRS) ≤ 4/10. Cost effectiveness (societal viewpoint, time horizon: pregnancy): incremental cost per days with NRS ≤ 4/10. Indirect non-healthcare costs included daily compensations for sick leave and productivity loss caused by absenteeism or presenteeism.</p><p>Results</p><p>96 women were allocated to acupuncture and 103 to standard care (total 199). The proportion of days with NRS ≤ 4/10 was greater in the acupuncture group than in the standard care group (61% vs 48%, p = 0.007). The mean Oswestry disability score was lower in the acupuncture group than with standard care alone (33 versus 38, Δ = 5, 95% CI: 0.8 to 9, p = 0.02). Average total costs were higher in the control group (€2947) than in the acupuncture group (€2635, Δ = —€312, 95% CI: -966 to +325), resulting from the higher indirect costs of absenteeism and presenteeism. Acupuncture was a dominant strategy when both healthcare and non-healthcare costs were included. Costs for the health system (employer and out-of-pocket costs excluded) were slightly higher for acupuncture (€1512 versus €1452, Δ = €60, 95% CI: -272 to +470).</p><p>Conclusion</p><p>Acupuncture was a dominant strategy when accounting for employer costs. A 100% probability of cost-effectiveness was obtained for a willingness to pay of €100 per days with pain NRS ≤ 4.</p></div

Ketoacidosis at diagnosis of type 1 diabetes in French children and adolescents

International audienceOBJECTIVES: This study aimed to evaluate the frequency of diabetic ketoacidosis (DKA) and its associated factors at the diagnosis of type 1 diabetes (T1D) in French children and adolescents prior to launching a public-health campaign of information to prevent DKA. PATIENTS AND METHODS: Over a 1-year period, 1299 youngsters (aged<15 years) were diagnosed with T1D at 146 paediatric centres in all regions of France. Age, gender, duration of symptoms, patient's pathway to diagnosis, clinical and biological signs, and family history of T1D were collected for each newly diagnosed patient. DKA was defined as pH<7.30 or bicarbonate<15mmol/L, and severe DKA as pH<7.10 or bicarbonate<5mmol/L. RESULTS: At the time of diagnosis, 26% of the children were aged 0-5 years, 34% were 5-10 years and 40% were 10-15 years. The overall prevalence of DKA was 43.9% (0-5 years: 54.2%; 5-10 years: 43.4%; and 10-15 years: 37.1%) and 14.8% for severe DKA (0-5 years: 16.6%; 5-10 years: 14.4%; and 10-15 years: 13.9%;<2 years: 25.3%). Severe DKA was more frequent when the child was hospitalized at the family's behest (26.6%) than when referred by a general practitioner (7.6%) or paediatrician (5.1%; 30.6%, 53.7% and 9.2%, respectively, by patients' age group). The frequency of DKA decreased to 20.1% (severe DKA: 4.4%) in families with a history of T1D. Multivariate analysis showed that age, pathway to diagnosis, duration of polyuria/polydipsia (< 1 week) and family history of T1D were associated with the presence of DKA, while pathway to diagnosis and family history of T1D were associated with severe DKA. CONCLUSION: DKA at the time of T1D diagnosis in children and adolescents is frequent and often severe. Patients' age, pathway to hospitalization and family history of diabetes were the main factors associated with DKA. These data suggest that a public-health campaign to prevent DKA at diagnosis can help reduce the frequency of DKA and also provide baseline data for evaluating the efficacy of such a campaign