Enfants conçus avec une aide médicale dans la cohorte Elfe

Objectif : étudier les conditions entourant la naissance des enfants conçus avec une aide médicale, et explorer le rôle des facteurs sociaux et médicaux dans la prématurité et l’hypotrophie.Méthodes : l'analyse porte sur 9495 enfants de la cohorte Elfe, de terme supérieur à 33 semaines d'aménorrhée, singletons ou jumeaux, répartis en trois groupes selon leur contexte de conception, "traitement", "infertiles non traités" et "fertiles" (790, 1044 et 7661 enfants). Cinq champs ont été décrits (caractéristiques sociales, antécédents maternels, grossesse, naissance, santé à deux mois). Une analyse univariée et multivariée des facteurs susceptibles d'être associés à la prématurité ou à l’hypotrophie a été réalisée. Les sous-groupes "fécondation in vitro" et "stimulation ovarienne" ont été comparés.Résultats : le groupe "traitement" présente une situation sociale très favorable, des grossesses plus compliquées et une gémellité, une prématurité et une hypotrophie significativement plus fréquentes. La gémellité et la prématurité sont significativement plus fréquentes en FIV qu'en stimulation. Après ajustement, il existe une association significative entre contexte de conception et prématurité, sans différence entre groupes traitement et infertile ni entre groupes FIV et stimulation. Aucune association n’est retrouvée avec l’hypotrophie.Conclusion : ces résultats suggèrent un sur-risque de complications néonatales chez les enfants de parents infertiles, traités ou non. Des particularités du groupe "infertile" empêchent cependant d'exclure un effet des techniques médicales. Le projet se poursuivra avec l'analyse du développement psychomoteur et pondéral entre la naissance et 3 ans

Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the Toronto Staging Guidelines (TG) by Population-Based Cancer Registries (PBCRs) to the most common solid paediatric cancers.MethodsPBCRs within and outside Europe were invited to participate and identify all cases of Neuroblastoma, Wilms Tumour, Medulloblastoma, Ewing Sarcoma, Rhabdomyosarcoma and Osteosarcoma diagnosed in a consecutive three-year period (2014-2017) and apply TG at diagnosis. Other non-stage prognostic factors, treatment, progression/recurrence, and cause of death information were collected as optional variables. A minimum of three-year follow-up was required. To standardise TG application by PBCRs, on-line workshops led by six tumour-specific clinical experts were held. To understand the role of data availability and quality, a survey focused on data collection/sharing processes and a quality assurance exercise were generated. To support data harmonization and query resolution a dedicated email and a question-and-answers bank were created.Results67 PBCRs from 28 countries participated and provided a maximally de-personalized, patient-level dataset. For 26 PBCRs, data format and ethical approval obtained by the two sponsoring institutions (UCL and INT) was sufficient for data sharing. 41 participating PBCRs required a Data Transfer Agreement (DTA) to comply with data protection regulations. Due to heterogeneity found in legal aspects, 18 months were spent on finalizing the DTA. The data collection survey was answered by 68 respondents from 63 PBCRs; 44% of them confirmed the ability to re-consult a clinician in cases where stage ascertainment was difficult/uncertain. Of the total participating PBCRs, 75% completed the staging quality assurance exercise, with a median correct answer proportion of 92% [range: 70% (rhabdomyosarcoma) to 100% (Wilms tumour)].ConclusionDifferences in interpretation and processes required to harmonize general data protection regulations across countries were encountered causing delays in data transfer. Despite challenges, the BENCHISTA Project has established a large collaboration between PBCRs and clinicians to collect detailed and standardised TG at a population-level enhancing the understanding of the reasons for variation in overall survival rates for CC, stimulate research and improve national/regional child health plans

Use of hospital palliative care according to the place of death and disease one year before death in 2013: a French national observational study

Abstract Background Only limited data are available concerning the diseases managed before death and hospital palliative care (HPC) use according to place of death in France. We therefore conducted an observational study based on administrative health data in a large population to identify the diseases treated one year before death in 2013, the place of stay with or without hospital palliative care, and the place of death. Methods French health insurance general scheme beneficiaries were identified in the National Health data Information System (Snds) with a selection of information. Diseases were identified by algorithms from reimbursement data recorded in the Snds database. Results 347,253 people were included in this study (61% of all people who died in France). Place of death was short stay hospital for 51%, Rehab (7%), hospital at home (3%), skilled nursing home (13%) and other (26%). Chronic diseases managed in 2013 before death were cardiovascular/neurovascular diseases (56%), cancers (42%), and neurological and degenerative diseases (25%). During the year before death, 84% of people were hospitalized at least once, and 29% had received HPC. HPC was used by 52% of cancer patients (lung cancer: 62%; prostate cancer: 41%). In the absence of cancer, the use of HPC varied according to the disease: acute stroke: 24%, heart failure: 17%, dementia: 17%, multiple sclerosis: 23%. Conclusions Health administrative data can refine the knowledge of the care pathway prior to death and the HPC utilisation and can be useful to evaluate heath policies and improve monitoring and assessment of HPC use

Factors associated with 5- and 10-year survival among a recent cohort of childhood cancer survivors (France, 2000–2015)

Background: Childhood cancer survival currently exceeds 80 % five years after diagnosis in high-income countries. In this study, we aimed to describe long-term trends and to investigate socioeconomic and spatial disparities in childhood cancer survival.Methods: The study included 28,073 cases recorded in the French National Registry of Childhood Cancers from 2000 to 2015. Contextual census data (deprivation indices, population density, spatial accessibility to general practitioners) were allocated to each case based on the residence at diagnosis. Overall survival (OS) and conditional 10-year OS for 5-year survivors were estimated for all cancers combined and by diagnostic group and subgroup. Comparisons were conducted by sex, age at diagnosis, period of diagnosis, and contextual indicators. Hazard ratios for death were estimated using Cox models.Results: All cancers combined, the OS reached 82.8 % [95 % CI: 82.4-83.3] at 5 years and 80.8 % [95 % CI: 80.3-81.3] at 10 years. Conditional 10-year OS of 5-year survivors reached 97.5 % [95 % CI: 97.3-97.7] and was higher than 95 % for all subgroups except osteosarcomas and most subgroups of the central nervous system. In addition to disparities by sex, age at diagnosis, and period of diagnosis, we observed a slight decrease in survival for cases living in the most deprived areas at diagnosis, not consistent across diagnostic groups.Conclusion: Our results confirm the high 5-year survival for childhood cancer and show an excellent 10-year conditional survival of 5-year survivors. Additional individual data are needed to clarify the factors underlying the slight decrease in childhood cancer survival observed in the most deprived areas

Additional file 1: of Use of hospital palliative care according to the place of death and disease one year before death in 2013: a French national observational study

Algorithms designed to identify beneficiaries reimbursed for chronic diseases and common, serious or expensive diseases and treatments. (DOC 102 kb

The Psychological Consequences of the COVID-19 Pandemic in Adults Treated for Childhood Cancer

Background: Compared with the general population, childhood cancer survivors (CCS) could be at greater risk of psychological distress following the emergence of the COVID-19 pandemic. Purpose: This cross-sectional study assessed the psychological consequences of COVID-19 on the mental health of CCS. Design and participants: In December 2020, we interviewed through an online self-report questionnaire, 580 5-year CCS participating in the French Childhood Cancer Survivor Study (FCCSS) cohort. Methods: We first compared the mental health score of CCS with that observed in the French general population of the same age and gender. Subsequently, we studied predictors of the mental health score of CCS. Results: External comparisons revealed that the mental health score of CCS was similar to that of the general population. Among CCS, almost 42% stated that their psychological state had been worse during the lockdown. Predictors of poorer mental health included, among others, female gender, reporting a change in the occupational situation, having a relative who had been hospitalized or had died following COVID-19, and a greater perceived infection risk. Interpretation and Implications: Given the pre-existing vulnerability of some CCS to mental distress, the additional psychological consequences of COVID-19 in vulnerable survivors should receive attention from health care providers

Data Resource Profile: The French Childhood Cancer Observation Platform (CCOP)

International audienc

Risk perceptions and health care use in the era of the COVID-19 pandemic in adults treated for childhood cancer

International audiencePurpose: During the COVID-19 pandemic, childhood cancer survivors (CCS) may have felt more at risk of having severe consequences of COVID-19 and therefore may have been more likely to defer their health care use. We aimed to assess the risk perceptions of CCS related to COVID-19 (perceived infection risk, perceived risk of experiencing a severe illness in the event of infection), and their forgoing of health care during the year 2020.Methods: In December 2020, we interviewed through an online self-report questionnaire 580 5-year CCS participating in the French Childhood Cancer Survivor Study (FCCSS) cohort. Combining clinical and patient-reported outcomes, we studied predictors of perceived risks related to COVID-19 and forgoing health care.Results: Overall, 60% of respondents stated that COVID-19 could have severe consequences for their health if infected. Survivors with a cardiovascular disease and those who felt more at risk of being infected were more likely to think that COVID-19 could have severe health consequences for them. Moreover, 30% of respondents seeking care declared they had forgone at least one medical appointment in 2020. Forgoing medical appointments was more common among CCS who reported a deterioration in their financial situation in 2020 and those who felt more at risk of being infected.Conclusions: This study shows that a considerable proportion of survivors had forgone medical appointments because of the pandemic; forgoing care was more frequent among the most socioeconomically disadvantaged survivors.Implications for cancer survivors: This study presents data hitherto absent in the literature and suggests the need to develop telehealth to ensure appropriate long-term follow-up of CCS