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1. Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study

Author

Botta, L, Gatta, G, Capocaccia, R, Stiller, C, Canete, A, Dal Maso, L, Innos, K, Mihor, A, Erdmann, F, Spix, C, Lacour, B, Marcos-Gragera, R, Murray, D, Rossi, S, Hackl, M, Van Eycken, E, Van Damme, N, Valerianova, Z, Sekerija, M, Scoutellas, V, Demetriou, A, Dusek, L, Krejci, D, Storm, H, Magi, M, Paapsi, K, Malila, N, Pitkaniemi, J, Jooste, V, Clavel, J, Poulalhon, C, Desandes, E, Monnereau, A, Katalinic, A, Petridou, E, Markozannes, G, Garami, M, Birgisson, H, Walsh, P, Mazzoleni, G, Vittadello, F, Cuccaro, F, Galasso, R, Sampietro, G, Rosso, S, Gasparotto, C, Maifredi, G, Ferrante, M, Torrisi, A, Sutera Sardo, A, Gambino, M, Lanzoni, M, Ballotari, P, Giacomazzi, E, Ferretti, S, Caldarella, A, Manneschi, G, Sant, M, Baili, P, Berrino, F, Trama, A, Lillini, R, Bernasconi, A, Bonfarnuzzo, S, Vener, C, Didone, F, Lasalvia, P, Del Monego, G, Buratti, L, Serraino, D, Taborelli, M, De Angelis, R, Demuru, E, Di Benedetto, C, Santaquilani, M, Venanzi, S, Tallon, M, Boni, L, Iacovacci, S, Russo, A, Gervasi, F, Spagnoli, G, Cavalieri d'Oro, L, Fusco, M, Vitale, M, Usala, M, Vitale, F, Michiara, M, Chiranda, G, Sacerdote, C, Maule, M, Cascone, G, Spata, E, Mangone, L, Falcini, F, Cavallo, R, Piras, D, Dinaro, Y, Castaing, M, Fanetti, A, Minerba, S, Candela, G, Scuderi, T, Rizzello, R, Stracci, F, Tagliabue, G, Rugge, M, Brustolin, A, Pildava, S, Smailyte, G, Azzopardi, M, Johannesen, T, Didkowska, J, Wojciechowska, U, Bielska-Lasota, M, Pais, A, Ferreira, A, Bento, M, Miranda, A, Safaei Diba, C, Zadnik, V, Zagar, T, Sanchez-Contador Escudero, C, Franch Sureda, P, Lopez de Munain, A, De-La-Cruz, M, Rojas, M, Aleman, A, Vizcaino, A, Almela, F, Sanvisens, A, Sanchez, M, Chirlaque, M, Sanchez-Gil, A, Guevara, M, Ardanaz, E, Canete-Nieto, A, Peris-Bonet, R, Galceran, J, Carulla, M, Kuehni, C, Redmond, S, Visser, O, Karim-Kos, H, Stevens, S, Gavin, A, Morrison, D, Huws, D, Botta L., Gatta G., Capocaccia R., Stiller C., Canete A., Dal Maso L., Innos K., Mihor A., Erdmann F., Spix C., Lacour B., Marcos-Gragera R., Murray D., Rossi S., Hackl M., Van Eycken E., Van Damme N., Valerianova Z., Sekerija M., Scoutellas V., Demetriou A., Dusek L., Krejci D., Storm H., Magi M., Paapsi K., Malila N., Pitkaniemi J., Jooste V., Clavel J., Poulalhon C., Desandes E., Monnereau A., Katalinic A., Petridou E., Markozannes G., Garami M., Birgisson H., Walsh P. M., Mazzoleni G., Vittadello F., Cuccaro F., Galasso R., Sampietro G., Rosso S., Gasparotto C., Maifredi G., Ferrante M., Torrisi A., Sutera Sardo A., Gambino M. L., Lanzoni M., Ballotari P., Giacomazzi E., Ferretti S., Caldarella A., Manneschi G., Sant M., Baili P., Berrino F., Trama A., Lillini R., Bernasconi A., Bonfarnuzzo S., Vener C., Didone F., Lasalvia P., Del Monego G., Buratti L., Serraino D., Taborelli M., De Angelis R., Demuru E., Di Benedetto C., Santaquilani M., Venanzi S., Tallon M., Boni L., Iacovacci S., Russo A. G., Gervasi F., Spagnoli G., Cavalieri d'Oro L., Fusco M., Vitale M. F., Usala M., Vitale F., Michiara M., Chiranda G., Sacerdote C., Maule M., Cascone G., Spata E., Mangone L., Falcini F., Cavallo R., Piras D., Dinaro Y., Castaing M., Fanetti A. C., Minerba S., Candela G., Scuderi T., Rizzello R. V., Stracci F., Tagliabue G., Rugge M., Brustolin A., Pildava S., Smailyte G., Azzopardi M., Johannesen T. B., Didkowska J., Wojciechowska U., Bielska-Lasota M., Pais A., Ferreira A. M., Bento M. J., Miranda A., Safaei Diba C., Zadnik V., Zagar T., Sanchez-Contador Escudero C., Franch Sureda P., Lopez de Munain A., De-La-Cruz M., Rojas M. D., Aleman A., Vizcaino A., Almela F., Sanvisens A., Sanchez M. J., Chirlaque M. D., Sanchez-Gil A., Guevara M., Ardanaz E., Canete-Nieto A., Peris-Bonet R., Galceran J., Carulla M., Kuehni C., Redmond S., Visser O., Karim-Kos H., Stevens S., Gavin A., Morrison D., Huws D. W., Botta, L, Gatta, G, Capocaccia, R, Stiller, C, Canete, A, Dal Maso, L, Innos, K, Mihor, A, Erdmann, F, Spix, C, Lacour, B, Marcos-Gragera, R, Murray, D, Rossi, S, Hackl, M, Van Eycken, E, Van Damme, N, Valerianova, Z, Sekerija, M, Scoutellas, V, Demetriou, A, Dusek, L, Krejci, D, Storm, H, Magi, M, Paapsi, K, Malila, N, Pitkaniemi, J, Jooste, V, Clavel, J, Poulalhon, C, Desandes, E, Monnereau, A, Katalinic, A, Petridou, E, Markozannes, G, Garami, M, Birgisson, H, Walsh, P, Mazzoleni, G, Vittadello, F, Cuccaro, F, Galasso, R, Sampietro, G, Rosso, S, Gasparotto, C, Maifredi, G, Ferrante, M, Torrisi, A, Sutera Sardo, A, Gambino, M, Lanzoni, M, Ballotari, P, Giacomazzi, E, Ferretti, S, Caldarella, A, Manneschi, G, Sant, M, Baili, P, Berrino, F, Trama, A, Lillini, R, Bernasconi, A, Bonfarnuzzo, S, Vener, C, Didone, F, Lasalvia, P, Del Monego, G, Buratti, L, Serraino, D, Taborelli, M, De Angelis, R, Demuru, E, Di Benedetto, C, Santaquilani, M, Venanzi, S, Tallon, M, Boni, L, Iacovacci, S, Russo, A, Gervasi, F, Spagnoli, G, Cavalieri d'Oro, L, Fusco, M, Vitale, M, Usala, M, Vitale, F, Michiara, M, Chiranda, G, Sacerdote, C, Maule, M, Cascone, G, Spata, E, Mangone, L, Falcini, F, Cavallo, R, Piras, D, Dinaro, Y, Castaing, M, Fanetti, A, Minerba, S, Candela, G, Scuderi, T, Rizzello, R, Stracci, F, Tagliabue, G, Rugge, M, Brustolin, A, Pildava, S, Smailyte, G, Azzopardi, M, Johannesen, T, Didkowska, J, Wojciechowska, U, Bielska-Lasota, M, Pais, A, Ferreira, A, Bento, M, Miranda, A, Safaei Diba, C, Zadnik, V, Zagar, T, Sanchez-Contador Escudero, C, Franch Sureda, P, Lopez de Munain, A, De-La-Cruz, M, Rojas, M, Aleman, A, Vizcaino, A, Almela, F, Sanvisens, A, Sanchez, M, Chirlaque, M, Sanchez-Gil, A, Guevara, M, Ardanaz, E, Canete-Nieto, A, Peris-Bonet, R, Galceran, J, Carulla, M, Kuehni, C, Redmond, S, Visser, O, Karim-Kos, H, Stevens, S, Gavin, A, Morrison, D, Huws, D, Botta L., Gatta G., Capocaccia R., Stiller C., Canete A., Dal Maso L., Innos K., Mihor A., Erdmann F., Spix C., Lacour B., Marcos-Gragera R., Murray D., Rossi S., Hackl M., Van Eycken E., Van Damme N., Valerianova Z., Sekerija M., Scoutellas V., Demetriou A., Dusek L., Krejci D., Storm H., Magi M., Paapsi K., Malila N., Pitkaniemi J., Jooste V., Clavel J., Poulalhon C., Desandes E., Monnereau A., Katalinic A., Petridou E., Markozannes G., Garami M., Birgisson H., Walsh P. M., Mazzoleni G., Vittadello F., Cuccaro F., Galasso R., Sampietro G., Rosso S., Gasparotto C., Maifredi G., Ferrante M., Torrisi A., Sutera Sardo A., Gambino M. L., Lanzoni M., Ballotari P., Giacomazzi E., Ferretti S., Caldarella A., Manneschi G., Sant M., Baili P., Berrino F., Trama A., Lillini R., Bernasconi A., Bonfarnuzzo S., Vener C., Didone F., Lasalvia P., Del Monego G., Buratti L., Serraino D., Taborelli M., De Angelis R., Demuru E., Di Benedetto C., Santaquilani M., Venanzi S., Tallon M., Boni L., Iacovacci S., Russo A. G., Gervasi F., Spagnoli G., Cavalieri d'Oro L., Fusco M., Vitale M. F., Usala M., Vitale F., Michiara M., Chiranda G., Sacerdote C., Maule M., Cascone G., Spata E., Mangone L., Falcini F., Cavallo R., Piras D., Dinaro Y., Castaing M., Fanetti A. C., Minerba S., Candela G., Scuderi T., Rizzello R. V., Stracci F., Tagliabue G., Rugge M., Brustolin A., Pildava S., Smailyte G., Azzopardi M., Johannesen T. B., Didkowska J., Wojciechowska U., Bielska-Lasota M., Pais A., Ferreira A. M., Bento M. J., Miranda A., Safaei Diba C., Zadnik V., Zagar T., Sanchez-Contador Escudero C., Franch Sureda P., Lopez de Munain A., De-La-Cruz M., Rojas M. D., Aleman A., Vizcaino A., Almela F., Sanvisens A., Sanchez M. J., Chirlaque M. D., Sanchez-Gil A., Guevara M., Ardanaz E., Canete-Nieto A., Peris-Bonet R., Galceran J., Carulla M., Kuehni C., Redmond S., Visser O., Karim-Kos H., Stevens S., Gavin A., Morrison D., and Huws D. W.

Abstract

Background: The EUROCARE-5 study revealed disparities in childhood cancer survival among European countries, giving rise to important initiatives across Europe to reduce the gap. Extending its representativeness through increased coverage of eastern European countries, the EUROCARE-6 study aimed to update survival progress across countries and years of diagnosis and provide new analytical perspectives on estimates of long-term survival and the cured fraction of patients with childhood cancer. Methods: In this population-based study, we analysed 135 847 children (aged 0–14 years) diagnosed during 2000–13 and followed up to the end of 2014, recruited from 80 population-based cancer registries in 31 European countries. We calculated age-adjusted 5-year survival differences by country and over time using period analysis, for all cancers combined and for major cancer types. We applied a variant of standard mixture cure models for survival data to estimate the cure fraction of patients by childhood cancer and to estimate projected 15-year survival. Findings: 5-year survival for all childhood cancer combined in Europe in 2010–14 was 81% (95% CI 81–82), showing an increase of three percentage points compared with 2004–06. Significant progress over time was observed for almost all cancers. Survival remained stable for osteosarcomas, Ewing sarcoma, Burkitt lymphoma, non-Hodgkin lymphomas, and rhabdomyoscarcomas. For all cancers combined, inequalities still persisted among European countries (with age-adjusted 5-year survival ranging from 71% [95% CI 60–79] to 87% [77–93]). The 15-year survival projection for all patients with childhood cancer diagnosed in 2010–13 was 78%. We estimated the yearly long-term mortality rate due to causes other than the diagnosed cancer to be around 2 per 1000 patients for all childhood cancer combined, but to approach zero for retinoblastoma. The cure fraction for patients with childhood cancer increased over time from 74% (95% CI 73–75) in 1998–

Published
2022

2. The global burden of childhood and adolescent cancer in 2017: an analysis of the Global Burden of Disease Study 2017

Author

Force, LM, Abdollahpour, I, Advani, SM, Agius, D, Ahmadian, E, Alahdab, F, Alam, T, Alebel, A, Alipour, V, Allen, CA, Almasi-Hashiani, A, Alvarez, EM, Amini, S, Amoako, YA, Anber, NH, Arabloo, J, Artaman, A, Atique, S, Awasthi, A, Bagherzadeh, M, Basaleem, H, Bekru, ET, Bijani, A, Bogale, KA, Car, M, Carvalho, F, Castro, C, Catala-Lopez, F, Dinh-Toi, C, Costa, VM, Darwish, AH, Demeke, FM, Demis, AB, Demoz, GT, Dharmaratne, SD, Huyen, PD, Linh, PD, Dubey, M, Eftekhari, A, El-Khatib, Z, Emamian, MH, Farhangi, MA, Fernandes, E, Fischer, F, Fard, RF, Friedrich, PM, Fukumoto, T, Gedefaw, GA, Ghashghaee, A, Gholamian, A, Haj-Mirzaian, A, Hamidi, S, Harvey, JD, Hassen, HY, Hay, S, Chi, LH, Hole, MK, Horita, N, Hosseini, SN, Hosseinzadeh, M, Hsairi, M, Hudson, MM, Innos, K, Jalilian, F, James, SL, Kasaeian, A, Kassa, TD, Kassebaum, NJ, Keiyoro, PN, Khader, YS, Khubchandani, J, Kianipour, N, Kirby, J, Kisa, A, Kisa, S, Kocarnik, JM, Lauriola, P, Lopez, AD, Magi, M, Malik, MA, Manafi, A, Manafi, N, Mansournia, MA, Massenburg, BB, Mehta, V, Meles, HG, Meretoja, TJ, Mestrovic, T, Mirzaei-Alavijeh, M, Mir, SM, Mohammad, DK, Darwesh, AM, Mezerji, NMG, Mohammadibakhsh, R, Mohammadoo-Khorasani, M, Mokdad, AH, Moodley, Y, Moosazadeh, M, Moossavi, M, Moradpour, F, Morrison, SD, Muchie, KF, Naghavi, M, Nazari, J, Ngunjiri, JW, Cuong, TN, Long, HN, Son, HN, Trang, HN, Nixon, MR, Olagunju, AT, Olagunju, TO, Ong, SK, Paapsi, K, Pennini, A, Pereira, DM, Pillay, JD, Qorbani, M, Rabiee, M, Rabiee, N, Raoofi, S, Rawaf, DL, Rawaf, S, Reiner, RC, Rezaei, N, Rezapour, A, Roba, KT, Robison, LL, Rodriguez-Galindo, C, Roshandel, G, Safiri, S, Salahshoor, M, Zahabi, SS, Samy, AM, Milicevic, MMS, Satpathy, M, Sawyer, SM, Seyedmousavi, S, Shabaninejad, H, Shaikh, MA, Shamshirian, A, Shamsizadeh, M, Shirkoohi, R, Siabani, S, Singh, JA, Siramlee, K, Tabares-Seisdedos, R, Temsah, M-H, Tran, BX, Ullah, I, Vahedian-Azimi, A, Vollset, SE, Vos, T, Waheed, Y, Weldesamuel, GT, Workie, HM, Xu, R, Yaseri, M, Yonemoto, N, Yu, C, Zadnik, V, Moghadam, TZ, Zaidi, Z, Zangeneh, A, Zewale, TA, Ziapour, A, Zodpey, S, Murray, CJL, Fitzmaurice, C, Bhakta, N, Force, LM, Abdollahpour, I, Advani, SM, Agius, D, Ahmadian, E, Alahdab, F, Alam, T, Alebel, A, Alipour, V, Allen, CA, Almasi-Hashiani, A, Alvarez, EM, Amini, S, Amoako, YA, Anber, NH, Arabloo, J, Artaman, A, Atique, S, Awasthi, A, Bagherzadeh, M, Basaleem, H, Bekru, ET, Bijani, A, Bogale, KA, Car, M, Carvalho, F, Castro, C, Catala-Lopez, F, Dinh-Toi, C, Costa, VM, Darwish, AH, Demeke, FM, Demis, AB, Demoz, GT, Dharmaratne, SD, Huyen, PD, Linh, PD, Dubey, M, Eftekhari, A, El-Khatib, Z, Emamian, MH, Farhangi, MA, Fernandes, E, Fischer, F, Fard, RF, Friedrich, PM, Fukumoto, T, Gedefaw, GA, Ghashghaee, A, Gholamian, A, Haj-Mirzaian, A, Hamidi, S, Harvey, JD, Hassen, HY, Hay, S, Chi, LH, Hole, MK, Horita, N, Hosseini, SN, Hosseinzadeh, M, Hsairi, M, Hudson, MM, Innos, K, Jalilian, F, James, SL, Kasaeian, A, Kassa, TD, Kassebaum, NJ, Keiyoro, PN, Khader, YS, Khubchandani, J, Kianipour, N, Kirby, J, Kisa, A, Kisa, S, Kocarnik, JM, Lauriola, P, Lopez, AD, Magi, M, Malik, MA, Manafi, A, Manafi, N, Mansournia, MA, Massenburg, BB, Mehta, V, Meles, HG, Meretoja, TJ, Mestrovic, T, Mirzaei-Alavijeh, M, Mir, SM, Mohammad, DK, Darwesh, AM, Mezerji, NMG, Mohammadibakhsh, R, Mohammadoo-Khorasani, M, Mokdad, AH, Moodley, Y, Moosazadeh, M, Moossavi, M, Moradpour, F, Morrison, SD, Muchie, KF, Naghavi, M, Nazari, J, Ngunjiri, JW, Cuong, TN, Long, HN, Son, HN, Trang, HN, Nixon, MR, Olagunju, AT, Olagunju, TO, Ong, SK, Paapsi, K, Pennini, A, Pereira, DM, Pillay, JD, Qorbani, M, Rabiee, M, Rabiee, N, Raoofi, S, Rawaf, DL, Rawaf, S, Reiner, RC, Rezaei, N, Rezapour, A, Roba, KT, Robison, LL, Rodriguez-Galindo, C, Roshandel, G, Safiri, S, Salahshoor, M, Zahabi, SS, Samy, AM, Milicevic, MMS, Satpathy, M, Sawyer, SM, Seyedmousavi, S, Shabaninejad, H, Shaikh, MA, Shamshirian, A, Shamsizadeh, M, Shirkoohi, R, Siabani, S, Singh, JA, Siramlee, K, Tabares-Seisdedos, R, Temsah, M-H, Tran, BX, Ullah, I, Vahedian-Azimi, A, Vollset, SE, Vos, T, Waheed, Y, Weldesamuel, GT, Workie, HM, Xu, R, Yaseri, M, Yonemoto, N, Yu, C, Zadnik, V, Moghadam, TZ, Zaidi, Z, Zangeneh, A, Zewale, TA, Ziapour, A, Zodpey, S, Murray, CJL, Fitzmaurice, C, and Bhakta, N

Abstract

BACKGROUND: Accurate childhood cancer burden data are crucial for resource planning and health policy prioritisation. Model-based estimates are necessary because cancer surveillance data are scarce or non-existent in many countries. Although global incidence and mortality estimates are available, there are no previous analyses of the global burden of childhood cancer represented in disability-adjusted life-years (DALYs). METHODS: Using the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2017 methodology, childhood (ages 0-19 years) cancer mortality was estimated by use of vital registration system data, verbal autopsy data, and population-based cancer registry incidence data, which were transformed to mortality estimates through modelled mortality-to-incidence ratios (MIRs). Childhood cancer incidence was estimated using the mortality estimates and corresponding MIRs. Prevalence estimates were calculated by using MIR to model survival and multiplied by disability weights to obtain years lived with disability (YLDs). Years of life lost (YLLs) were calculated by multiplying age-specific cancer deaths by the difference between the age of death and a reference life expectancy. DALYs were calculated as the sum of YLLs and YLDs. Final point estimates are reported with 95% uncertainty intervals. FINDINGS: Globally, in 2017, there were 11·5 million (95% uncertainty interval 10·6-12·3) DALYs due to childhood cancer, 97·3% (97·3-97·3) of which were attributable to YLLs and 2·7% (2·7-2·7) of which were attributable to YLDs. Childhood cancer was the sixth leading cause of total cancer burden globally and the ninth leading cause of childhood disease burden globally. 82·2% (82·1-82·2) of global childhood cancer DALYs occurred in low, low-middle, or middle Socio-demographic Index locations, whereas 50·3% (50·3-50·3) of adult cancer DALYs occurred in these same locations. Cancers that are uncategorised in the current GBD framework comprised 26·5% (26·5-26·5) of gl

Published
2019

5. Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study

Author

Laura Botta, Gemma Gatta, Riccardo Capocaccia, Charles Stiller, Adela Cañete, Luigino Dal Maso, Kaire Innos, Ana Mihor, Friederike Erdmann, Claudia Spix, Brigitte Lacour, Rafael Marcos-Gragera, Deirdre Murray, Silvia Rossi, Monika Hackl, Elizabeth Van Eycken, Nancy Van Damme, Zdravka Valerianova, Mario Sekerija, Vasos Scoutellas, Anna Demetriou, Ladislav Dušek, Denisa Krejci, Hans Storm, Margit Mägi, Keiu Paapsi, Nea Malila, Janne Pitkäniemi, Valerie Jooste, Jacqueline Clavel, Claire Poulalhon, Emmanuel Desandes, Alain Monnereau, Alexander Katalinic, Eleni Petridou, Georgios Markozannes, Miklos Garami, Helgi Birgisson, Paul M Walsh, Guido Mazzoleni, Fabio Vittadello, Francesco Cuccaro, Rocco Galasso, Giuseppe Sampietro, Stefano Rosso, Cinzia Gasparotto, Giovanni Maifredi, Margherita Ferrante, Antonina Torrisi, Antonella Sutera Sardo, Maria Letizia Gambino, Monica Lanzoni, Paola Ballotari, Erica Giacomazzi, Stefano Ferretti, Adele Caldarella, Gianfranco Manneschi, Milena Sant, Paolo Baili, Franco Berrino, Annalisa Trama, Roberto Lillini, Alice Bernasconi, Simone Bonfarnuzzo, Claudia Vener, Fabio Didonè, Paolo Lasalvia, Giulia Del Monego, Lucia Buratti, Diego Serraino, Martina Taborelli, Roberta De Angelis, Elena Demuru, Corrado Di Benedetto, Mariano Santaquilani, Serenella Venanzi, Marco Tallon, Luca Boni, Silvia Iacovacci, Antonio Giampiero Russo, Federico Gervasi, Gianbattista Spagnoli, Luca Cavalieri d'Oro, Mario Fusco, Maria Francesca Vitale, Mario Usala, Francesco Vitale, Maria Michiara, Giorgio Chiranda, Carlotta Sacerdote, Milena Maule, Giuseppe Cascone, Eugenia Spata, Lucia Mangone, Fabio Falcini, Rossella Cavallo, Daniela Piras, Ylenia Dinaro, Marine Castaing, Anna Clara Fanetti, Sante Minerba, Giuseppina Candela, Tiziana Scuderi, Roberto Vito Rizzello, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Angelita Brustolin, Santa Pildava, Giedre Smailyte, Miriam Azzopardi, Tom Børge Johannesen, Joanna Didkowska, Urszula Wojciechowska, Magdalena Bielska-Lasota, Ana Pais, Ana Maria Ferreira, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Vesna Zadnik, Tina Zagar, Carmen Sánchez-Contador Escudero, Paula Franch Sureda, Arantza Lopez de Munain, Marta De-La-Cruz, Marìa Dolores Rojas, Araceli Aleman, Ana Vizcaino, Fernando Almela, Arantza Sanvisens, Maria Josè Sanchez, Maria Dolores Chirlaque, Antonia Sanchez-Gil, Marcela Guevara, Eva Ardanaz, Adela Cañete-Nieto, Rafael Peris-Bonet, Jaume Galceran, Maria Carulla, Claudia Kuehni, Shelagh Redmond, Otto Visser, Henrike Karim-Kos, Sarah Stevens, Anna Gavin, David Morrison, Dyfed Wyn Huws, Botta, L, Gatta, G, Capocaccia, R, Stiller, C, Canete, A, Dal Maso, L, Innos, K, Mihor, A, Erdmann, F, Spix, C, Lacour, B, Marcos-Gragera, R, Murray, D, Rossi, S, Hackl, M, Van Eycken, E, Van Damme, N, Valerianova, Z, Sekerija, M, Scoutellas, V, Demetriou, A, Dusek, L, Krejci, D, Storm, H, Magi, M, Paapsi, K, Malila, N, Pitkaniemi, J, Jooste, V, Clavel, J, Poulalhon, C, Desandes, E, Monnereau, A, Katalinic, A, Petridou, E, Markozannes, G, Garami, M, Birgisson, H, Walsh, P, Mazzoleni, G, Vittadello, F, Cuccaro, F, Galasso, R, Sampietro, G, Rosso, S, Gasparotto, C, Maifredi, G, Ferrante, M, Torrisi, A, Sutera Sardo, A, Gambino, M, Lanzoni, M, Ballotari, P, Giacomazzi, E, Ferretti, S, Caldarella, A, Manneschi, G, Sant, M, Baili, P, Berrino, F, Trama, A, Lillini, R, Bernasconi, A, Bonfarnuzzo, S, Vener, C, Didone, F, Lasalvia, P, Del Monego, G, Buratti, L, Serraino, D, Taborelli, M, De Angelis, R, Demuru, E, Di Benedetto, C, Santaquilani, M, Venanzi, S, Tallon, M, Boni, L, Iacovacci, S, Russo, A, Gervasi, F, Spagnoli, G, Cavalieri d'Oro, L, Fusco, M, Vitale, M, Usala, M, Vitale, F, Michiara, M, Chiranda, G, Sacerdote, C, Maule, M, Cascone, G, Spata, E, Mangone, L, Falcini, F, Cavallo, R, Piras, D, Dinaro, Y, Castaing, M, Fanetti, A, Minerba, S, Candela, G, Scuderi, T, Rizzello, R, Stracci, F, Tagliabue, G, Rugge, M, Brustolin, A, Pildava, S, Smailyte, G, Azzopardi, M, Johannesen, T, Didkowska, J, Wojciechowska, U, Bielska-Lasota, M, Pais, A, Ferreira, A, Bento, M, Miranda, A, Safaei Diba, C, Zadnik, V, Zagar, T, Sanchez-Contador Escudero, C, Franch Sureda, P, Lopez de Munain, A, De-La-Cruz, M, Rojas, M, Aleman, A, Vizcaino, A, Almela, F, Sanvisens, A, Sanchez, M, Chirlaque, M, Sanchez-Gil, A, Guevara, M, Ardanaz, E, Canete-Nieto, A, Peris-Bonet, R, Galceran, J, Carulla, M, Kuehni, C, Redmond, S, Visser, O, Karim-Kos, H, Stevens, S, Gavin, A, Morrison, D, and Huws, D

Subjects
Retinal Neoplasms, Retinoblastoma, Bone Neoplasms, Sarcoma, Ewing, EUROCARE-6, survival, Burkitt Lymphoma, population-based cancer registrie, Europe, Oncology, Humans, cure fraction, childhood cancer, EUROCARE, Child, chidlhood cancer
Abstract

Background: The EUROCARE-5 study revealed disparities in childhood cancer survival among European countries, giving rise to important initiatives across Europe to reduce the gap. Extending its representativeness through increased coverage of eastern European countries, the EUROCARE-6 study aimed to update survival progress across countries and years of diagnosis and provide new analytical perspectives on estimates of long-term survival and the cured fraction of patients with childhood cancer. Methods: In this population-based study, we analysed 135 847 children (aged 0–14 years) diagnosed during 2000–13 and followed up to the end of 2014, recruited from 80 population-based cancer registries in 31 European countries. We calculated age-adjusted 5-year survival differences by country and over time using period analysis, for all cancers combined and for major cancer types. We applied a variant of standard mixture cure models for survival data to estimate the cure fraction of patients by childhood cancer and to estimate projected 15-year survival. Findings: 5-year survival for all childhood cancer combined in Europe in 2010–14 was 81% (95% CI 81–82), showing an increase of three percentage points compared with 2004–06. Significant progress over time was observed for almost all cancers. Survival remained stable for osteosarcomas, Ewing sarcoma, Burkitt lymphoma, non-Hodgkin lymphomas, and rhabdomyoscarcomas. For all cancers combined, inequalities still persisted among European countries (with age-adjusted 5-year survival ranging from 71% [95% CI 60–79] to 87% [77–93]). The 15-year survival projection for all patients with childhood cancer diagnosed in 2010–13 was 78%. We estimated the yearly long-term mortality rate due to causes other than the diagnosed cancer to be around 2 per 1000 patients for all childhood cancer combined, but to approach zero for retinoblastoma. The cure fraction for patients with childhood cancer increased over time from 74% (95% CI 73–75) in 1998–2001 to 80% (79–81) in 2010–13. In the latter cohort, the cure fraction rate ranged from 99% (95% CI 74–100) for retinoblastoma to 60% (58–63) for CNS tumours and reached 90% (95% CI 87–93) for lymphoid leukaemia and 70% (67–73) for acute myeloid leukaemia. Interpretation: Childhood cancer survival is increasing over time in Europe but there are still some differences among countries. Regular monitoring of childhood cancer survival and estimation of the cure fraction through population-based registry data are crucial for evaluating advances in paediatric cancer care. Funding: European Commission.

Published
2022

6. Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study

Author

Fabio Falcini, Charles A. Stiller, Diego Serraino, Antonella Sutera Sardo, Kerri Clough-Gorr, Mario Fusco, Véronique Bouvier, Silvia Francisci, Alain Monnereau, Carmen Navarro, Alessandro Barchielli, Annalisa Trama, Bénédicte Lapôtre-Ledoux, Stanislaw Gózdz, Isabelle Konzelmann, J. Błaszczyk, Laura Botta, Simona Bara, Flavio Sensi, Gonçalo Forjaz de Lacerda, Nadya Dimitrova, Lucia Mangone, Pamela Minicozzi, Maria Michiara, Neville Calleja, M Usala, E Marani, Innos Kaire, Tom Børge Johannesen, Ladislav Dušek, Sabine Luttmann, M Autelitano, Anne Sophie Woronoff, Vincent K Y Ho, Francesco Vitale, Silvano Piffer, Jan Maarten van der Zwan, Dyfed Wyn Huws, David H. Brewster, Margit Mägi, Zdravka Valerianova, Anna Luisa Caiazzo, Maja Primic Žakelj, Adriano Giacomin, E. Almar, F Bella, Ellen Benhamou, Arantza Lopez de Munain, Patrick Arveux, Claire Schvartz, José María Díaz García, M. Robaszkiewicz, Isabelle Baldi, Otto Visser, Mohsen Mousavi, Maria José Bento, Lesley A. Anderson, Chakameh Safaei Diba, Mariano Santaquilani, Gemma Gatta, Tina Žagar, Pina Candela, Jadwiga Rachtan, María José Sánchez, Andrea Bordoni, Monika Hackl, Gabriele Schubert-Fritschle, Nea Malila, Diego Salmerón, Massimo Rugge, Carmen Tereanu, Maarit K. Leinonen, Jem Rashbass, Arturo Iannelli, Milena Sant, Antonino Ziino Colanino, Marià Carulla, Christine Bouchardy, Keiu Paapsi, Marc Colonna, Jon G. Jonasson, Brigitte Trétarre, A.V. Guizard, Riccardo Capocaccia, Xavier Troussard, Jan Heidrich, Dominic Agius, Kamila Kepska, Daniela Pierannunzio, Santa Pildava, Stefano Ferretti, Silvia Rossi, Guido Mazzoleni, Rafael Marcos-Gragera, Giedre Smailyte, Gianbattista Spagnoli, Nancy Van Damme, Roland Stabenow, Anna Gavin, Paolo Baili, Anselmo Madeddu, Fabio Pannozzo, M. Sekerija, Silvia Ess, Sandra Mallone, Rosa Filiberti, Pascale Grosclaude, Florence Molinié, S Maspero, Alice Nennecke, Rosario Tumino, Renée Otter, Ana Torrella-Ramos, Fabrizio Stracci, Giovanna Tagliabue, Michel Velten, Andrea Tavilla, Marc Maynadié, Arnold Knijn, Conchi Moreno-Iribas, Eva Ardanaz, M.A. Gentilini, Paolo Ricci, Liesbet Van Eycken, Ana Miranda, Sabine Siesling, Nerea Larrañaga, Roberta De Angelis, Harry Comber, Paolo Collarile, K. Henau, Bernd Holleczek, Anne Marie Bouvier, Jutta Engel, Jaume Galceran, Gatta G., Capocaccia R., Botta L., Mallone S., De Angelis R., Ardanaz E., Comber H., Dimitrova N., Leinonen M.K., Siesling S., van der Zwan J.M., Van Eycken L., Visser O., Zakelj M.P., Anderson L.A., Bella F., Kaire I., Otter R., Stiller C.A., Trama A., Hackl M., Henau K., Van Damme N., Valerianova Z., Sekerija M., Dusek L., Magi M., Paapsi K., Malila N., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., SchubertFritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., Collarile P., Pannozzo F., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Caiazzo A.L., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Colanino A.Z., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Baili P., Minicozzi P., Sant M., Tereanu C., Francisci S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pildava S., Smailyte G., Calleja N., Agius D., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., Lacerda G.F.D., Bento M.J., Miranda A., Diba C.S., Zagar T., Almar E., Larranaga N., Munain A.L.D., Torrella-Ramos A., Garcia J.M.D., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Ho V.K., and Benhamou E.

Subjects
Male, 0301 basic medicine, Pathology, population-based registries, Cancer Care Facilities, Delivery of Health Care, Europe, Female, Hospitalization, Humans, Incidence, Neoplasms, Rare Diseases, Registries, Survival Rate, Oncology, 0302 clinical medicine, Medicine, media_common, Tumors -- Treatment -- Europe, education.field_of_study, Relative survival, Incidence (epidemiology), RARECARE project, 030220 oncology & carcinogenesis, medicine.medical_specialty, Health surveys, Population, Socio-culturale, 03 medical and health sciences, SDG 3 - Good Health and Well-being, media_common.cataloged_instance, Cancer -- Mortality, Risk factor, European union, education, Survival rate, Oncology, cancer burden, incidence, rare cancer,population-based registries, rare cancers, cancer registry, RARECARE, business.industry, Rare cancer, Cancer -- Patients -- Long-term care, Cancer registry, 030104 developmental biology, cancer burden, business, Demography, Rare disease
Abstract

Background: Rare cancers pose challenges for diagnosis, treatments, and clinical decision making. Information about rare cancers is scant. The RARECARE project defined rare cancers as those with an annual incidence of less than six per 100 000 people in European Union (EU). We updated the estimates of the burden of rare cancers in Europe, their time trends in incidence and survival, and provide information about centralisation of treatments in seven European countries. Methods: We analysed data from 94 cancer registries for more than 2 million rare cancer diagnoses, to estimate European incidence and survival in 2000–07 and the corresponding time trends during 1995–2007. Incidence was calculated as the number of new cases divided by the corresponding total person-years in the population. 5-year relative survival was calculated by the Ederer-2 method. Seven registries (Belgium, Bulgaria, Finland, Ireland, the Netherlands, Slovenia, and the Navarra region in Spain) provided additional data for hospitals treating about 220 000 cases diagnosed in 2000–07. We also calculated hospital volume admission as the number of treatments provided by each hospital rare cancer group sharing the same referral pattern. Findings: Rare cancers accounted for 24% of all cancers diagnosed in the EU during 2000–07. The overall incidence rose annually by 0.5% (99·8% CI 0·3–0·8). 5-year relative survival for all rare cancers was 48·5% (95% CI 48·4 to 48·6), compared with 63·4% (95% CI 63·3 to 63·4) for all common cancers. 5-year relative survival increased (overall 2·9%, 95% CI 2·7 to 3·2), from 1999–2001 to 2007–09, and for most rare cancers, with the largest increases for haematological tumours and sarcomas. The amount of centralisation of rare cancer treatment varied widely between cancers and between countries. The Netherlands and Slovenia had the highest treatment volumes. Interpretation: Our study benefits from the largest pool of population-based registries to estimate incidence and survival of about 200 rare cancers. Incidence trends can be explained by changes in known risk factors, improved diagnosis, and registration problems. Survival could be improved by early diagnosis, new treatments, and improved case management. The centralisation of treatment could be improved in the seven European countries we studied., peer-reviewed

Published
2017
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7. Incidence and survival of rare adult solid cancers in Europe (EUROCARE-6): A population-based study.

Author

Trama A, Bernasconi A, Cañete A, Carulla M, Daubisse-Marliac L, Rossi S, De Angelis R, Sanvisens A, Katalinic A, Paapsi K, Went P, Mousavi M, Blum M, Eberle A, Lamy S, Capocaccia R, Didonè F, and Botta L

Subjects
Humans, Europe epidemiology, Incidence, Male, Female, Adult, Middle Aged, Aged, Registries statistics & numerical data, Rare Diseases epidemiology, Rare Diseases mortality, Young Adult, Adolescent, Aged, 80 and over, Survival Rate, Neoplasms epidemiology, Neoplasms mortality
Abstract

Background: Rare cancers correspond to approximately 200 clinical entities, which can be grouped into 12 families. Updated data are available for childhood and haematological cancers, ie, for only two of the 12 families of rare cancer. We provide incidence and survival for the remaining ten families of rare adult solid cancers (RAC), across 29 EU Member States and over time. We also evaluate the association between resources invested in health and survival from RACs., Methods: We used the EUROCARE-6 database, which includes data from 108 cancer registries from 29 countries. We calculated incidence rates (IR) and 5-year relative survival (RS) for cases diagnosed during 2006-2013. We calculated 5-year RS in the follow-up period 2010-2014 using the period approach (last follow-up: December 31, 2014). We estimated changes in 5-year RS and IR over the period 2000-2013. We used a forest plot to report the differences in RS among countries with the highest and lowest health spending., Results: RACs are heterogeneous in terms of incidence, survival, sex, and age distribution. Several RACs (eg, those of the hypopharynx, small intestine, and trachea) still have a 5-year RS < 30 %, which is not improving. Survival differs among European countries and is higher in countries with the greatest investments in health. The incidence of smoking-related RACs is decreasing but rising in HPV-related RACs., Conclusion: Investments in health and healthcare networks at national and European level can help increase the survival of RACs, especially those requiring centralisation of care (eg, bone sarcomas, penile cancer). These investments are critical considering that survival from RACs is not significantly improving. Our results unmask the heterogeneity of RACs, which needs to be considered in clinical trial design. Finally, our findings support the importance of prevention strategies for known risk factors such as smoking., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Ltd.)

Published
2025
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8. Survival and Health Care Burden of Children With Retinoblastoma in Europe.

Author

Virgili G, Capocaccia R, Botta L, Bennett D, Hadjistilianou T, Innos K, Karim-Kos H, Kuehni CE, Kuhnel U, Mazzini C, Canete Nieto A, Paapsi K, Parravano M, Ronckers CM, Rossi S, Stiller C, Vicini G, Visser O, and Gatta G

Abstract

Importance: Studies on the epidemiology of retinoblastoma (RB) could lead to improvement in management., Objective: To estimate the incidence and survival of RB in European children and the occurrence of second primary tumors (other than RB) in these patients., Design, Setting, and Participants: This cohort study used population-based data from 81 cancer registries in 31 European countries adhering to the European Cancer Registries (EUROCARE-6) project. Data collection took place between January 2000 and December 2013. European children aged 0 to 14 years diagnosed with RB were included. Data were analyzed from May to November 2023., Exposures: Diagnosis of RB with International Classification of Diseases for Oncology, Third Edition (ICD-O-3), morphology coded 9510-9514 (retinoblastoma) and malignant behavior (fifth digit of morphology code, 3)., Main Outcome and Measures: Annual incidence (per million children aged 0-14 years), 5-year survival (%), and the standardized incidence ratio (SIR) of subsequent malignant neoplasms., Results: The study included 3262 patients (mean [SD] age, 1.27 [1.63] years; 1706 [52%] male and 1556 [48%] female) from 81 registries. Of these, 3098 patients were considered in trend analysis after excluding registries with incomplete time coverage: 940 in 2000 to 2003, 703 in 2004 to 2006, 744 in 2007 to 2009, and 856 in 2010 to 2013. The estimated overall European incidence rate was 4.0 (95% CI, 3.9-4.1). Rates among countries varied from less than 2 million to greater than 6 million per year. No time trend of incidence was observed in any area. The overall European 5-year survival was 97.8% (95% CI, 95.5-98.9; 3180 cases). Five-year survival was lower in Estonia and Bulgaria (<80%) and 100% in several countries. Twenty-five subsequent malignant neoplasms were recorded during follow-up (up to 14 years), with an SIR of 8.2 and with cases occurring at mean ages between 1.3 and 8.9 years across different sites. An increased risk was found for hematological tumors (SIR, 5) and bone and soft tissue sarcomas (SIR, 29)., Conclusions and Relevance: This study showed RB incidence remained stable at 4.0 per 1 000 000 European children aged 0 to 14 years from 2000 to 2013, but estimates varied among countries and differences in survival across countries persist. These data might be used to monitor RB management and occurrences of second tumors. The findings suggest future registry studies should aim to collect standardized RB stage at diagnosis and treatment to interpret disparities and potentially improve surveillance.

Published
2024
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9. Long-term survival for lymphoid neoplasms and national health expenditure (EUROCARE-6): a retrospective, population-based study.

Author

Sant M, Vener C, Lillini R, Rossi S, Bonfarnuzzo S, Marcos-Gragera R, Maynadié M, Innos K, Paapsi K, Visser O, Bernasconi A, Demuru E, Di Benedetto C, Mousavi SM, Blum M, Went P, Serraino D, Bennett D, Sánchez MJ, and De Angelis R

Subjects
Humans, Male, Retrospective Studies, Female, Middle Aged, Adult, Aged, Europe epidemiology, Young Adult, Adolescent, Lymphoma mortality, Lymphoma epidemiology, Lymphoma economics, Registries, Aged, 80 and over, Prognosis, Time Factors, Health Expenditures statistics & numerical data
Abstract

Background: Management of lymphoid malignancies requires substantial health system resources. Total national health expenditure might influence population-based lymphoid malignancy survival. We studied the long-term survival of patients with 12 lymphoid malignancy types and examined whether different levels of national health expenditure might explain differences in lymphoid malignancy prognosis between European countries and regions., Methods: For this observational, retrospective, population-based study, we analysed the EUROCARE-6 dataset of patients aged 15 or older diagnosed between 2001 and 2013 with one of 12 lymphoid malignancies defined according to International Classification of Disease for Oncology (third edition) and WHO classification, and followed up to 2014 (Jan 1, 2001-Dec 31, 2014). Countries were classified according to their mean total national health expenditure quartile in 2001-13. For each lymphoid malignancy, 5-year and 10-year age-standardised relative survival (ASRS) was calculated using the period approach. Generalised linear models indicated the effects of age at diagnosis, gender, and total national health expenditure on the relative excess risk of death (RER)., Findings: 82 cancer registries (61 regional and 21 national) from 27 European countries provided data eligible for 10-year survival estimates comprising 890 730 lymphoid malignancy cases diagnosed in 2001-13. Median follow-up time was 13 years (IQR 13-14). Of the 12 lymphoid malignancies, the 10-year ASRS in Europe was highest for hairy cell leukaemia (82·6% [95% CI 78·9-86·5) and Hodgkin lymphoma (79·3% [78·6-79·9]) and lowest for plasma cell neoplasms (29·5% [28·9-30·0]). RER increased with age at diagnosis, particularly from 55-64 years to 75 years or older, for all lymphoid malignancies. Women had higher ASRS than men for all lymphoid malignancies, except for precursor B, T, or natural killer cell, or not-otherwise specified lymphoblastic lymphoma or leukaemia. 10-year ASRS for each lymphoid malignancy was higher (and the RER lower) in countries in the highest national health expenditure quartile than in countries in the lowest quartile, with a decreasing pattern through quartiles for many lymphoid malignancies. 10-year ASRS for non-Hodgkin lymphoma, the most representative class for lymphoid malignancies based on the number of incident cases, was 59·3% (95% CI 58·7-60·0) in the first quartile, 57·6% (55·2-58·7) in the second quartile, 55·4% (54·3-56·5) in the third quartile, and 44·7% (43·6-45·8) in the fourth quartile; with reference to the European mean, the RER was 0·80 (95% CI 0·79-0·82) in the first, 0·91 (0·90-0·93) in the second, 0·94 (0·92-0·96) in the third, and 1·45 (1·42-1·48) in the fourth quartiles., Interpretation: Total national health expenditure is associated with geographical inequalities in lymphoid malignancy prognosis. Policy decisions on allocating economic resources and implementing evidence-based models of care are needed to reduce these differences., Funding: Italian Ministry of Health, European Commission, Estonian Research Council., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2024 Elsevier Ltd. All rights reserved, including those for text and data mining, AI training, and similar technologies.)

Published
2024
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10. Survival of European adolescents and young adults diagnosed with cancer in 2010-2014.

Author

Trama A, Botta L, Stiller C, Visser O, Cañete-Nieto A, Spycher B, Bielska-Lasota M, Katalinic A, Vener C, Innos K, Marcos-Gragera R, Paapsi K, Guevara M, Demuru E, Mousavi SM, Blum M, Eberle A, Ferrari A, Bernasconi A, and Lasalvia P

Subjects
Female, Humans, Adolescent, Young Adult, Adult, Registries, Europe epidemiology, Neoplasms diagnosis, Neoplasms epidemiology, Neoplasms therapy, Central Nervous System Neoplasms, Hematologic Neoplasms, Thyroid Neoplasms
Abstract

Background: We used the comprehensive definition of AYA (age 15 to 39 years) to update 5-year relative survival (RS) estimates for AYAs in Europe and across countries and to evaluate improvements in survival over time., Methods: We used data from EUROCARE-6. We analysed 700,000 AYAs with cancer diagnosed in 2000-2013 (follow-up to 2014). We focused the analyses on the 12 most common cancers in AYA. We used period analysis to estimate 5-year RS in Europe and 5-year RS differences in 29 countries (2010-2014 period estimate) and over time (2004-06 vs. 2010-14 period estimates)., Findings: 5-year RS for all AYA tumours was 84%, ranging from 70% to 90% for most of the 12 tumours analysed. The exceptions were acute lymphoblastic leukaemia, acute myeloid leukaemia, and central nervous system tumours, presenting survival of 59%, 61%, and 62%, respectively. Differences in survival were observed among European countries for all cancers, except thyroid cancers and ovarian germ-cell tumours. Survival improved over time for most cancers in the 15- to 39-year-old age group, but for fewer cancers in adolescents and 20- to 29-year-olds., Interpretation: This is the most comprehensive study to report the survival of 12 cancers in AYAs in 29 European countries. We showed variability in survival among countries most likely due to differences in stage at diagnosis, access to treatment, and lack of referral to expert centres. Survival has improved especially for haematological cancers. Further efforts are needed to improve survival for other cancers as well, especially in adolescents., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Published
2024
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11. Complete cancer prevalence in Europe in 2020 by disease duration and country (EUROCARE-6): a population-based study.

Author

De Angelis R, Demuru E, Baili P, Troussard X, Katalinic A, Chirlaque Lopez MD, Innos K, Santaquilani M, Blum M, Ventura L, Paapsi K, Galasso R, Guevara M, Randi G, Bettio M, Botta L, Guzzinati S, Dal Maso L, and Rossi S

Subjects
Humans, Female, Male, Prevalence, Quality of Life, Europe epidemiology, Melanoma, Skin Neoplasms, Kidney Neoplasms, Colorectal Neoplasms
Abstract

Background: Cancer survivors-people living with and beyond cancer-are a growing population with different health needs depending on prognosis and time since diagnosis. Despite being increasingly necessary, complete information on cancer prevalence is not systematically available in all European countries. We aimed to fill this gap by analysing population-based cancer registry data from the EUROCARE-6 study., Methods: In this population-based study, using incidence and follow-up data up to Jan 1, 2013, from 61 cancer registries, complete and limited-duration prevalence by cancer type, sex, and age were estimated for 29 European countries and the 27 countries in the EU (EU27; represented by 22 member states that contributed registry data) using the completeness index method. We focused on 32 malignant cancers defined according to the third edition of the International Classification of Diseases for Oncology, and only the first primary tumour was considered when estimating the prevalence. Prevalence measures are expressed in terms of absolute number of prevalent cases, crude prevalence proportion (reported as percentage or cases per 100 000 resident people), and age-standardised prevalence proportion based on the European Standard Population 2013. We made projections of cancer prevalence proportions up to Jan 1, 2020, using linear regression., Findings: In 2020, 23 711 thousand (95% CI 23 565-23 857) people (5·0% of the population) were estimated to be alive after a cancer diagnosis in Europe, and 22 347 thousand (95% CI 22 210-22 483) in EU27. Cancer survivors were more frequently female (12 818 thousand [95% CI 12 720-12 917]) than male (10 892 thousand [10 785-11 000]). The five leading tumours in female survivors were breast cancer, colorectal cancer, corpus uterine cancer, skin melanoma, and thyroid cancer (crude prevalence proportion from 2270 [95%CI 2248-2292] per 100 000 to 301 [297-305] per 100 000). Prostate cancer, colorectal cancer, urinary bladder cancer, skin melanoma, and kidney cancer were the most common tumours in male survivors (from 1714 [95% CI 1686-1741] per 100 000 to 255 [249-260] per 100 000). The differences in prevalence between countries were large (from 2 to 10 times depending on cancer type), in line with the demographic structure, incidence, and survival patterns. Between 2010 and 2020, the number of prevalent cases increased by 3·5% per year (41% overall), partly due to an ageing population. In 2020, 14 850 thousand (95% CI 14 681-15 018) people were estimated to be alive more than 5 years after diagnosis and 9099 thousand (8909-9288) people were estimated to be alive more than 10 years after diagnosis, representing an increasing proportion of the cancer survivor population., Interpretation: Our findings are useful at the country level in Europe to support evidence-based policies to improve the quality of life, care, and rehabilitation of patients with cancer throughout the disease pathway. Future work includes estimating time to cure by stage at diagnosis in prevalent cases., Funding: European Commission., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Published
2024
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12. Evidence of overestimating prostate cancer mortality in Estonia: a population-based study.

Author

Innos K, Paapsi K, Alas I, Baum P, Kivi M, Kovtun M, Okas R, Pokker H, Rajevskaja O, Rautio A, Saretok M, Valk E, Žarkovski M, Denissov G, and Lang K

Subjects
Male, Humans, Estonia epidemiology, Prostate, Cause of Death, Registries, Prostatic Neoplasms diagnosis
Abstract

Background: Prostate cancer (PC) mortality statistics in Estonia has shown inconsistencies with incidence and survival trends. The aim of this population-based study was to assess the accuracy of reporting PC as the underlying cause of death and estimate the effect of misattribution in assigning cause of death on PC mortality rates., Material and Methods: The Estonian Causes of Death Registry (CoDR) and Cancer Registry provided data on all men in Estonia who died in 2017 and had a mention of PC on any field of the death certificate or had a lifetime diagnosis of PC. A blinded review of medical records was conducted by an expert panel to ascertain whether the underlying cause was PC or other death. We estimated the agreement between the underlying causes of death registered at the CoDR and those ascertained by medical review and calculated corrected mortality rates., Results: The study population included 655 deaths. Among 277 PC deaths registered at CoDR, 164 (59%) were verified by medical review. Among 378 other deaths registered at CoDR, 17 (5%) were ascertained as PC deaths by medical review. In total, the number of PC deaths decreased from 277 to 181 and the corrected age standardized (world) mortality rate decreased from 20 to 13 per 100 000 (1.5-fold overestimation, 95% confidence interval 1.2-1.9)., Conclusions: PC mortality statistics in Estonia should be interpreted with caution and possible overestimation considered when making policy decisions. Quality assurance mechanisms should be reinforced in the whole death certification process.

Published
2022
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13. Human papillomavirus self-sampling for long-term non-attenders in cervical cancer screening: A randomised feasibility study in Estonia.

Author

Veerus P, Hallik R, Jänes J, Jõers K, Paapsi K, Laidra K, and Innos K

Subjects
Early Detection of Cancer methods, Estonia epidemiology, Feasibility Studies, Female, Humans, Male, Mass Screening methods, Middle Aged, Papillomaviridae, Self Care, Specimen Handling methods, Vaginal Smears methods, Alphapapillomavirus, Papillomavirus Infections diagnosis, Uterine Cervical Neoplasms epidemiology
Abstract

Objective: Organised cervical cancer screening was started in Estonia in 2006, but participation is still low. Human papillomavirus (HPV) self-sampling has proved to increase screening uptake. This study addressed the feasibility of HPV self-sampling and the acceptance of this method among long-term screening non-attenders., Methods: A randomised intervention study was conducted in Estonia in 2020. Women born in 1958-1983 without a Pap smear in 2013-2019 were identified in the Estonian Health Insurance Fund database. From them, 12,000 women were randomly allocated to three equal-sized study groups. The opt-out group received a questionnaire and a Qvintip® sampling device by regular mail. Two opt-in groups received a questionnaire and an e-mail invitation to order a self-sampler online; one received Qvintip and the other Evalyn® Brush. Participantś background characteristics were obtained from the Population Register. The effect of covariates on participation rate was estimated with multivariate Poisson regression. Acceptance of self-sampling was analysed according to agreement with statements in the questionnaire., Results: The overall participation rate was 16% with significant differences between opt-out (26%) and opt-in (11%) groups. Compared to the opt-out Qvintip group, adjusted relative risks for the Qvintip and Evalyn Brush opt-in groups were 0.41 (95% confidence interval (CI) 0.37-0.45) and 0.44 (95% CI 0.40-0.49), respectively. Participation was associated with living place, citizenship, and education. Self-sampling was well accepted: 98% agreed that it was easy to use, 88% preferred it as a screening method in future., Conclusions: The results show the feasibility and good acceptance of HPV self-sampling among long-term screening non-attenders in Estonia.

Published
2022
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14. The impact of sociodemographic factors on the utilization of radiation therapy in breast cancer patients in Estonia: a register-based study.

Author

Shahrabi Farahani F, Paapsi K, and Innos K

Subjects
Aged, Estonia, Female, Humans, Middle Aged, Registries, Socioeconomic Factors, Breast Neoplasms radiotherapy, Patient Acceptance of Health Care statistics & numerical data, Radiotherapy statistics & numerical data
Abstract

Background: Radiation therapy is an important part of multimodal breast cancer treatment. The aim was to examine the impact of sociodemographic factors on radiation therapy use in breast cancer (BC) patients in Estonia, linking cancer registry data to administrative databases., Methods: Estonian Cancer Registry provided data on women diagnosed with BC in Estonia in 2007-2018, including TNM stage at diagnosis. Use of radiation therapy within 12 months of diagnosis was determined from Estonian Health Insurance Funds claims, and sociodemographic characteristics from population registry. Receipt of radiation therapy was evaluated over time and by clinical and sociodemographic factors. Poisson regression with robust variance was used to calculate univariate and multivariate prevalence rate ratios (PRR) with 95 % confidence intervals (CI) for receipt of radiation therapy among stage I-III BC patients age < 70 years who underwent primary surgery., Results: Overall, of 8637 women included in the study, 4310 (50 %) received radiation therapy within 12 months of diagnosis. This proportion increased from 39 to 58 % from 2007 to 2009 to 2016-2018 (p < 0.001). Multivariate regression analysis showed that compared to women with stage I BC, those with more advanced stage were less likely to receive radiation therapy. Receipt of radiation therapy increased significantly over time and was nearly 40 % higher in 2016-2018 than in 2007-2009. Use of radiation therapy was significantly lower for women with the lowest level of education compared to those with a university degree (PRR 0.88, 95 % CI 0.80-0.97), and for divorced/widowed women (PRR 0.95, 95 % CI 0.91-0.99) and single women (PRR 0.92, 95 % CI 0.86-0.99), compared to married women. Age at diagnosis, nationality and place of residence were not associated with receipt of radiation therapy., Conclusions: The study showed considerable increase in the use of radiation therapy in Estonia over the study period, which is in line with increases in available equipment. The lack of geographic variations suggests equal access to therapy for patients living in remote regions. However, educational level and marital status were significantly associated with receipt of radiation therapy, highlighting the importance of psychosocial support in ensuring equal access to care.

Published
2021
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15. Childhood cancer incidence and survival trends in Estonia (1970-2016): a nationwide population-based study.

Author

Paapsi K, Baburin A, Mikkel S, Mägi M, Saks K, and Innos K

Subjects
Adolescent, Child, Child, Preschool, Estonia epidemiology, Female, History, 20th Century, History, 21st Century, Humans, Incidence, Infant, Infant, Newborn, Male, Neoplasms history, Neoplasms mortality, Population Surveillance, Prognosis, Registries, Neoplasms epidemiology
Abstract

Background: Childhood cancers represent a small proportion of all cancers but are still a major public health problem. The study analysed long-term trends in childhood cancer incidence and survival in Estonia in relation to societal and health care transition., Methods: Data on all malignant tumours, diagnosed in children aged 0-14 during 1970-2016, were derived from the Estonian Cancer Registry. Age-standardised (World standard) incidence rates were calculated by ICCC-3 site groups and joinpoint regression was used to estimate annual percentage change (APC) for incidence trends. Cohort and period approach were used to estimate 5-year survival. Internal age standardisation was applied., Results: A total of 1628 incident cancer cases were diagnosed during the study period and overall incidence increased significantly at a rate of 0.5% per year. Significant increases were seen for neuroblastoma and germ cell tumours, for lymphoid leukemias and some CNS sub-sites. At the same time, decline in incidence was seen in almost all subgroups of unspecified neoplasms. The overall 5-year survival improved from 24% in 1970-1979 to 73% in 2010-2016, with the largest changes occurring in the 1990s and 2000s. For many sites, survival increase thereafter has been marginal., Conclusion: In this first comprehensive population-based study of childhood cancer incidence and survival in Estonia, long-term trends are shown in the context of societal and health care changes. Even though the increasing incidence of some sites may, at least partially, be explained by improved diagnostics reflected in the decreased incidence of unspecified neoplasms, the overall cancer incidence in children seems to be rising. Rapid progress in diagnosis and care have improved childhood cancer survival immensely, but deficit in Estonia persists compared to other European countries. Results of the study accentuate the need for a more in-depth analysis of clinical data, but also for the prioritization of childhood cancer in Estonia, to ensure access to standard care and innovative treatments.

Published
2020
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16. Subsite- and stage-specific colorectal cancer trends in Estonia prior to implementation of screening.

Author

Innos K, Reima H, Baburin A, Paapsi K, Aareleid T, and Soplepmann J

Subjects
Aged, Aged, 80 and over, Colorectal Neoplasms epidemiology, Combined Modality Therapy, Estonia epidemiology, Female, Humans, Incidence, Male, Middle Aged, Survival Rate, Colorectal Neoplasms mortality, Colorectal Neoplasms pathology, Early Detection of Cancer, Health Plan Implementation, Mortality trends, Neoplasm Staging standards, Registries statistics & numerical data
Abstract

Background: The occurrence of colorectal cancer (CRC) in Estonia has been characterised by increasing incidence, low survival and no screening. The study aimed to examine long-term incidence and survival trends of CRC in Estonia with specific focus on subsite and stage., Methods: We analysed CRC incidence and relative survival using Estonian Cancer Registry data on all cases of colorectal cancer (ICD-10 C18-21) diagnosed in 1995-2014. TNM classification was used to categorise stage., Results: Age-standardized incidence of colon cancer increased both in men and women at a rate of approximately 1% per year. Significant increase was seen for right-sided tumours, but not for left-sided tumours. Rectal cancer incidence increased significantly only in men and anal cancer incidence only in women. Age-standardized five-year relative survival for colon cancer increased from 50% in 1995-1999 to 59% in 2010-2014; for rectal cancer, from 38% to 56%. Colon cancer survival improved significantly for left-sided tumours (from 51% to 62%) and stage IV disease (from 6% to 15%). For rectal cancer, significant survival gain was seen for stage II (from 58% to 75%), stage III (from 34% to 70%) and stage IV (from 1% to 12%)., Conclusion: In the pre-screening era in Estonia, increase in colon cancer incidence was limited to right-sided tumours. Large stage-specific survival gain, particularly for rectal cancer, was probably due to better staging and advances in multimodality treatment. Nonetheless, more than one quarter of new CRC cases are diagnosed at stage IV, emphasising the need for an efficient screening program., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Published
2018
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17. The impact of under-reporting of cases on the estimates of childhood cancer incidence and survival in Estonia.

Author

Paapsi K, Mägi M, Mikkel S, Saks K, Aareleid T, and Innos K

Subjects
Adolescent, Child, Child, Preschool, Estonia epidemiology, Female, Humans, Incidence, Infant, Infant, Newborn, Male, Research Design trends, Survival Rate trends, Neoplasms mortality, Research Design standards
Abstract

About 35 new childhood cancer cases are diagnosed in Estonia (population 1.3 million in 2011) every year. Despite continuous improvements in the healthcare system and available cancer treatment options, the survival rates for childhood cancers have appeared to remain lower than the European average. These observations and the accompanying decrease in incidence led us to hypothesize that some nonfatal cases might be missing from the Estonian Cancer Registry (ECR). The aim of this study was to evaluate the completeness of reporting of childhood cancer cases to the ECR and its impact on the estimates of cancer incidence and survival. All cases of benign and malignant tumours, diagnosed in 2000-2011 among children aged 0-17 years and eligible for registration in the ECR, were included in the study. Completeness of reporting was evaluated for cases aged 0-17 years, and incidence and survival were analysed for cases aged 0-14 for international comparisons. The total number of new cancer cases increased from 459 to 515. Overall completeness of case ascertainment was estimated to be 89.5%. After adding the missing cases, the overall incidence rate increased from 12.9 to 14.9/100 000 (from 3.4 to 4.7 for leukaemias). The 2010-2014 period estimate of the 5-year survival increased from 70 to 76% for all sites combined and from 71 to 82% for leukaemias. In conclusion, the under-reporting of nonfatal childhood cancer cases to the ECR had an important impact on incidence and survival rates, causing a considerable underestimation of both.

Published
2017
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18. Acetylation of H3 K56 is required for RNA polymerase II transcript elongation through heterochromatin in yeast.

Author

Värv S, Kristjuhan K, Peil K, Lõoke M, Mahlakõiv T, Paapsi K, and Kristjuhan A

Subjects
Acetylation, G1 Phase, Genes, Fungal genetics, Genetic Loci genetics, Nucleosomes metabolism, Open Reading Frames, RNA, Messenger metabolism, Saccharomyces cerevisiae cytology, Silent Information Regulator Proteins, Saccharomyces cerevisiae metabolism, Heterochromatin metabolism, Histones metabolism, Lysine metabolism, RNA Polymerase II metabolism, Saccharomyces cerevisiae genetics, Saccharomyces cerevisiae metabolism, Transcription, Genetic
Abstract

In Saccharomyces cerevisiae SIR proteins mediate transcriptional silencing, forming heterochromatin structures at repressed loci. Although recruitment of transcription initiation factors can occur even to promoters packed in heterochromatin, it is unclear whether heterochromatin inhibits RNA polymerase II (RNAPII) transcript elongation. To clarify this issue, we recruited SIR proteins to the coding region of an inducible gene and characterized the effects of the heterochromatic structure on transcription. Surprisingly, RNAPII is fully competent for transcription initiation and elongation at the locus, leading to significant loss of heterochromatin proteins from the region. A search for auxiliary factors required for transcript elongation through the heterochromatic locus revealed that two proteins involved in histone H3 lysine 56 acetylation, Rtt109 and Asf1, are needed for efficient transcript elongation by RNAPII. The efficiency of transcription through heterochromatin is also impaired in a strain carrying the K56R mutation in histone H3. Our results show that H3 K56 modification is required for efficient transcription of heterochromatic locus by RNAPII, and we propose that transcription-coupled incorporation of H3 acetylated K56 (acK56) into chromatin is needed for efficient opening of heterochromatic loci for transcription.

Published
2010
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