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

SATISFACTION DES SOINS RECUS EN CANCEROLOGIE

NANCY1-SCD Medecine (545472101) / SudocPARIS-BIUM (751062103) / SudocSudocFranceF

: Surveillance of cancer in adolescents and young adults in France

International audienceIn France, adult cancer registries from the FRANCIM network are used for the surveillance of cancer in adolescents and young adults (AYAs). Since 2011, data on 15-17 year olds have also been recorded by the two French National Childhood Cancer registries.Between 2000 and 2008, 2,418 new cases of cancer in AYAs were recorded. The most frequently diagnosed cancers in AYA were malignant gonadal germ-cell tumors, Hodgkin's lymphoma, melanoma and thyroid carcinoma. Overall age-standardized incidence rates (ASR) were 254.1 per million in 15-24 year olds (sex ratio 1.1). The ASR was stable over time. Between 2000 and 2004, the 5-year overall survival rate for all cancers was 81.8%, with differences observed between genders and age groups: 78.8% and 85.2% for males and females, respectively; 78.5% and 84.3% in 15-19 and 20-24 year olds, respectively. Survival significantly improved over the last 20 years.Studies investigating the management of AYAs with cancer have shown great disparities in patient care and a lack of collaboration between adult oncologists and pediatric oncologists. Consequently, an AYA cancer multidisciplinary working group has been created to improve AYA cancer services and care.La surveillance des cancers de l’adolescent et du jeune adulte (AJA), âgés de 15 à 24 ans, est assurée par les registres généraux et spécialisés du cancer du réseau Francim et depuis 2011, pour les 15-17 ans, par les deux registres nationaux pédiatriques.Sur la période 2000-2008, avec 2 418 nouveaux cas recensés, les cancers les plus fréquemment observés chez les AJA étaient les tumeurs germinales, les lymphomes de Hodgkin, les mélanomes et les cancers de la thyroïde. L’incidence annuelle standardisée sur la population mondiale était de 254,1 par million, avec un sex-ratio H/F de 1,1. L’incidence est restée stable au cours du temps. La survie globale à cinq ans durant la période 2000-2004 était de 81,8%, avec des différences selon le sexe (78,8% chez les hommes et 85,2% chez les femmes) et selon l’âge (78,5% chez les 15-19 ans et 84,3% chez les 20-24 ans). Elle a régulièrement augmenté au cours des 20 dernières années.Les études sur la prise en charge des AJA révèlent une grande hétérogénéité et un manque de collaboration entre oncologues d’adultes et oncopédiatres, justifiant la création d’un groupe de travail multidisciplinaire consacré aux cancers de cette tranche d’âge

Childhood cancer survival in France, 2000–2008

International audienceThis paper reports the latest survival data for French childhood cancer patients at the national level. Data from the two French National Registries of Childhood Cancer (Haematopoietic Malignancies and Solid Tumours) were used to describe survival outcomes for 15,479 children diagnosed with cancer between 2000 and 2008 in mainland France. The overall survival was 91.7% at 1 year, 86.9% at 2 years and 81.6% at 5 years. Relative survival did not differ from overall survival even for infants. Survival was lower among infants for lymphoblastic leukaemia and astrocytoma, but higher for neuroblastoma. For all cancers considered together, 5-year survival increased from 79.5% in the first (2000-2002) diagnostic period to 83.2% in the last (2006-2008) period. The improvement was significant for leukaemia, both myeloid and lymphoid, central nervous system tumours (ependymoma) and neuroblastoma. The results remained valid in the multivariate analysis, and, for all cancers combined, the risk of death decreased by 20% between 2000-2002 and 2006-2008. The figures are consistent with various international estimates and are the result of progress in treatment regimens and collaborative clinical trials. The challenge for the French registries is now to study the long-term follow-up of survivors to estimate the incidence of long-term morbidities and adverse effects of treatments

Treatment of vulvar Intraepithelial neoplasia with CO2 laser vaporization and excision surgery.

International audienceOBJECTIVE: To evaluate the recurrence rate after a single treatment of vulvar intraepithelial neoplasia (VIN) with CO2 laser vaporization. MATERIALS AND METHODS: Fifty women with usual-type or differentiated VIN (grades 2 and 3) treated with CO2 laser vaporization or surgery excision (cold knife or CO2 laser) were retrospectively evaluated. RESULTS: Of the 50 patients, 41 (82.0%) had usual-type VIN and 9 (18.0%) had differentiated VIN. Moreover, 24 (48.0%) were treated with surgery excision and 26 (52.0%) underwent CO2 laser vaporization. Laser-treated patients were significantly younger (p < .01) with more multifocal (p < .05) and multicentric lesions (p < .01) than in the surgery group. Recurrence-free survival (RFS) rates at 1 year were 91.0% for the surgery and 65.2% for the laser vaporization groups (p < .01). At 5 years, RFS rates were unchanged for the surgery group and dropped to 51.3% (p < .01) for the laser group. On the univariate analysis, current smoker (p = .03), multicentric VIN (p = .02), and laser vaporization treatment (p < .01) had a statistically significant impact on RFS. One patient progressed to invasive cancer (2%). CONCLUSIONS: The recurrence rate after CO2 laser vaporization requires regular, close, and extended monitoring

Survival of adolescents with cancer treated at pediatric versus adult oncology treatment centers in France

International audienceBackground: In France, although children aged less than 15 years with cancer are usually referred to pediatric oncology centers, adolescents may be treated at pediatric or adult oncology centers. The objective was to compare survival according to their site of treatment.Procedure: Using population-based registration, 15- to 19-year-old patients diagnosed with cancer in 2006 or 2007 and living in six French regions (accounting for 41% of the French population) were included.Results: Of the 594 patients included, 33% of the French adolescents were treated at a pediatric oncology center. Compared with those treated at a pediatric center, adolescents treated at an adult center were older, were more likely to have carcinoma and germ-cell tumor, had a longer time to diagnosis, and were less likely to be enrolled in a clinical trial. In addition, the decisions for their management were less likely to be taken in the context of multidisciplinary team meetings. In multivariate analysis, adolescent patients treated at a pediatric center did not have significantly different overall survival (OS) compared with those treated at an adult center (5-year OS: 84.1% [95% confidence interval: 78.6-90.0] versus 87.7% [95% confidence interval: 84.2-91.3]; P = 0.25).Conclusions: The outcomes of French adolescents with cancer have begun to improve, with 81.2% survival in 2006-2007, with no difference between the types of treatment center. However, for this unique group of diseases, survival is not the unique endpoint. In order to ensure good quality of life after cancer, management of those patients requires specific approaches, designed to reduce the late effects of cancer treatment and improve supportive care

Efficacy and morbidity of arc-therapy radiosurgery for cerebral arteriovenous malformations: a comparison with the natural history

International audiencePurpose: To report the results of arc-therapy radiosurgery for cerebral arteriovenous malformation (AVM) and to compare the adverse event rate with the rate expected from the natural history.Methods and materials: We performed a retrospective study of our 118 first patients with a mean follow-up of 46 months (range, 5–105 months). The AVMs had features indicating a poor prognosis at initial presentation and had already been treated by previous embolizations in 88% of patients. The mean volume of the targets was 7.4 cm3 (range, 0.3–28.3 cm3). The mean minimal and maximal dose was 17.7 Gy (range, 10–25 Gy) and 24.5 Gy (range, 17–36 Gy), respectively.Results: The crude and 5-year actuarial rate of cure (total obstruction of the AVM shunt at angiography) was 54% (60 of 112) and 77%, respectively. The only independent prognostic factor of cure was the AVM volume (crude cure rate 67% for <7 cm3 vs. 35% for ≥7 cm3; p = 0.001). No patient died. Transient and permanent complications and hemorrhage occurred in 5%, 1.7%, and 6% of patients, respectively. The annual risk of an adverse event (hemorrhage or complication) was 3.9%.Conclusion: The results of our series showed that radiosurgery, performed alone or after prior shrinkage of the AVM by embolization, is both effective and well tolerated, with a rate of adverse events comparable to that expected from the natural history

Cancer adolescent pathway in France between 1988 and 1997.

International audienceWe report an adolescent cancer pathway from referral, through diagnosis and treatment, to follow-up in France. All cases of cancer among 15-19 years, diagnosed from 1988 to 1997, recorded by nine French population-based cancer registries (10% of French population) were included. The management of adolescent cancer by paediatricians was rare. An adolescents' pathway through cancer care can be summarized as first visit to general practitioner, referral to adult oncologist for haematological malignancy and medical or surgical specialists for solid tumours, treatment in adult unit, and follow-up by adult oncologist, adult medical or surgical specialist, or general practitioner. Only 9% of the 15-19 years are entered into a clinical trial (respectively 6% and 3% into adult and paediatric clinical trial). The inclusion rate changes according to the diagnosis, higher for acute lymphoblastic leukaemia (39%), non-Hodgkin's lymphomas (NHL) (27%), and acute non-lymphoblastic leukaemia (20%). Only 4% of adolescent cancers were managed on shared adult/paediatric departments, especially for soft-tissue sarcomas (14.9%), malignant bone tumours (13.4), central nervous system tumours (6.2%), and NHL (4.4%). Whatever the reasons for lack of participation in clinical trials, an ideal model requiring communication and cooperation between all adult and paediatric specialists involved in adolescent cancer treatment should reduce the large gap in access to cooperative groups