Emmanuel Desandes1,2, Laurence Brugières3, Florence Molinié4, Gautier Defossez5, Patricia Delafosse6, Karine Jehannin-Ligier7, Michel Velten8, Brigitte Trétarre9, Brice Amadéo10, Emilie Marrer11, Anne-Sophie Woronoff12, Olivier Ganry13, Alain Monnereau14, Tania d'Almeida15, Xavier Troussard16, Laetitia Daubisse-Marliac17, Simona Bara18, Anne-Valérie Guizard19, Isabelle Baldi20, Guy Launoy21, Jacqueline Clavel2,22, Brigitte Lacour1,2. 1. CHRU Nancy, Registre National des cancers de l'Enfant, Registre National des Tumeurs Solides de l'Enfant, Vandœuvre-lès-Nancy, France. 2. Université Paris-Sorbonne, CRESS équipe7, Inserm UMRS-1153, Paris, France. 3. Gustave Roussy Cancer Campus, Département de Cancérologie de l'Enfant et de l'Adolescent, Villejuif, France. 4. Registre des cancers de Loire-Atlantique et Vendée, Nantes, France. 5. Registre Général des Cancers de Poitou-Charentes, CHU Poitiers, Poitiers, France. 6. Registre du cancer du département de l'Isère, CHU Grenoble, Grenoble, France. 7. Registre Général des Cancers de Lille et de sa Région, Lille, France. 8. Université de Strasbourg, Inserm IRFAC UMR-S 1113, Registre des cancers du Bas-Rhin, Strasbourg, France. 9. Institut du Cancer de Montpellier, Registre des tumeurs de l'Hérault, Montpellier, France. 10. Université de Bordeaux, Inserm U1219, ISPED, Registre des cancers de la Gironde, Bordeaux, France. 11. Groupe hospitalier de Mulhouse et Sud Alsace (GHRMSA), Registre des cancers du Haut-Rhin, Mulhouse, France. 12. CHRU Besançon, Registre des tumeurs du Doubs et du Territoire de Belfort - EA3181, Besançon, France. 13. CHRU Amiens, Registre du cancer de la Somme, Amiens, France. 14. Institut Bergonié, Registre des Hémopathies Malignes de la Gironde, Bordeaux, France. 15. CHU Limoges, Registre Général des Cancers de la Haute-Vienne, Limoges, France. 16. CHU Caen, Université Caen Normandie, Registre Régional des Hémopathies Malignes de Basse Normandie, Caen, France. 17. Institut Claudius Regaud, IUCT-O, Registre des cancers du Tarn, Toulouse, France; CHU Toulouse, France; UMR 1027 Université de Toulouse, UPS, Inserm, Toulouse, France. 18. Centre Hospitalier Cherbourg Public du Cotentin, Registre des cancers de la Manche, Cherbourg-Octeville -en-Cotentin, Cherbourg, France. 19. Centre François Baclesse, Registre Général des Tumeurs du Calvados, U1086 INSERM, UCBN, Caen, France. 20. Université de Bordeaux, Inserm U1219, ISPED, Registre des Tumeurs du système nerveux central de Gironde, Bordeaux, France. 21. Université de Caen, U 1086 Inserm, Registre des tumeurs digestives du Calvados, Caen, France. 22. Registre National des cancers de l'Enfant, Registre National des hémopathies malignes de l'Enfant, Villejuif, France.
Abstract
BACKGROUND: In order to evaluate at the population level the impact of the actions developed in France since 2004 to organize the care of adolescents and young adults (AYAs) with cancer, we conducted the present study to provide an unbiased view of the pathway of care of these patients. METHODS: Using a population-based registry, we conducted a review of all cases of cancer diagnosed during 2012 and 2013 in 15- to 24-year-old patients living in nineteen French administrative areas. RESULTS: The median times for diagnosis and treatment of the 993 included AYAs were 9 weeks (3-22) and 1 day (0-20), respectively. Delays in diagnosis were significantly longer in young adults than in adolescents, especially for soft-tissue sarcomas (48.7 weeks vs. 15.4 weeks, P = 0.04) and bone tumors (21.4 weeks vs. 10.1 weeks, P = 0.04). The first physicians seen by patients were mostly general practitioners (67.4%). Most patients (77.5%) were treated in adult units. Management decisions were taken within the context of a multidisciplinary team (MDT) in 85.3% of cases. MDT meetings that involved both pediatric and adult oncologists were uncommon (15.7% of patients). Twenty-six percent of patients were included in randomized or nonrandomized clinical studies. The proportion of inclusion was significantly higher in adolescents (39.5%) than in young adults (16.8%). CONCLUSION: In France, pathways of care for AYAs are heterogeneous. It is necessary to organize a national network of expert centers with adequate medical skills and specific psychosocial support and facilities to provide the best possible care for these patients.
BACKGROUND: In order to evaluate at the population level the impact of the actions developed in France since 2004 to organize the care of adolescents and young adults (AYAs) with cancer, we conducted the present study to provide an unbiased view of the pathway of care of these patients. METHODS: Using a population-based registry, we conducted a review of all cases of cancer diagnosed during 2012 and 2013 in 15- to 24-year-old patients living in nineteen French administrative areas. RESULTS: The median times for diagnosis and treatment of the 993 included AYAs were 9 weeks (3-22) and 1 day (0-20), respectively. Delays in diagnosis were significantly longer in young adults than in adolescents, especially for soft-tissue sarcomas (48.7 weeks vs. 15.4 weeks, P = 0.04) and bone tumors (21.4 weeks vs. 10.1 weeks, P = 0.04). The first physicians seen by patients were mostly general practitioners (67.4%). Most patients (77.5%) were treated in adult units. Management decisions were taken within the context of a multidisciplinary team (MDT) in 85.3% of cases. MDT meetings that involved both pediatric and adult oncologists were uncommon (15.7% of patients). Twenty-six percent of patients were included in randomized or nonrandomized clinical studies. The proportion of inclusion was significantly higher in adolescents (39.5%) than in young adults (16.8%). CONCLUSION: In France, pathways of care for AYAs are heterogeneous. It is necessary to organize a national network of expert centers with adequate medical skills and specific psychosocial support and facilities to provide the best possible care for these patients.