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Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries

2020; BMJ; Volume: 105; Issue: 10 Linguagem: Inglês

10.1136/bjophthalmol-2020-316613

1468-2079

Ido Didi Fabian, Andrew W. Stacey, Allen Foster, Tero Kivelä, Francis L. Munier, Naama Keren‐Froim, Nir Gomel, Nathalie Cassoux, Mandeep S. Sagoo, M. Ashwin Reddy, Lamis Al Harby, Marcia Zondervan, Covadonga Bascarán, Abdallah Elhassan, Shehu U. Abdullahi, Sahadatou Adamou Boubacar, Dupe Ademola-Popoola, Adedayo Adio, AE Aghaji, S. Alarcón Portabella, Amadou I Alfa Bio, Amany Ali, Donjeta B. Alia, Charlotta All‐Eriksson, Argentino A Almeida, Khalifa M Alsawidi, Antonino Romanzo, Nick Astbury, Rose Atsiaya, Julia Balaguer, Walentyna Balwierz, Honorio Barranco, Maja Beck‐Popovic, Sarra Benmiloud, Nissrine Bennani Guebessi, R. Bérété, Shelley J. Biddulph, Eva Biewald, Sharon Blum, Nadia Bobrova, Marianna Boehme, Norbert Bornfeld, Gabrielle C. Bouda, H. Bouguila, Amaria Boumedane, Bénédicte G. Brichard, Michael Capra, Guilherme Castela, Jaume Catalá‐Mora, Guillermo Chantada, Violeta Chernodrinska, Faraja Chiwanga, Krzysztof Cieślik, Codruta Comsa, Maria G. Correa Llano, Monika Csóka, Isac V. Da Gama, Alan Davidson, Patrick De Potter, Laurence Desjardins, Monica Dragomir, Magritha Du Bruyn, A. El Kettani, Amal Elbahi, Dina Elgalaly, Alaa Elhaddad, Moawia Mohammed Ali Elhassan, Mahmoud M. Elzembely, Vera Adobea Essuman, Ted Grimbert A Evina, Oluyemi Fasina, Ana Fernández‐Teijeiro, Moira Gandiwa, David García Aldana, Jennifer Geel, Zelalem Gizachew, Pernille A. Gregersen, K.M. Guedenon, Theodora Hadjistilianou, Sadiq Hassan, Stanislava Hederová, Laila Hessissen, Diriba Fufa, Marlies Hummlen, Kristína Husáková, Ida Russo, Vesna R. Ilic, Helen Jenkinson, Théophile Kabesha, Rolande Kaboré, Abubakar Kalinaki, Noa Kapelushnik, Tamar Kardava, P. Kemilev, Tomáš Kepák, Zaza Khotenashvili, Artur Klett, Jess Elio Kosh Komba Palet, Dalia Krivaitienė, Mariana Kruger, Alice Kyara, Eva S. Lachmann, Slobodanka Latinović, Karin Lecuona, Robert Mbuli Lukamba, Livia Lumbroso‐Le Rouic, Lesia Lysytsia, Erika Maka, Mayuri Makan, Chatonda Manda, Nieves Martín Begué, Ibrahim Matende, Marchelo Matua, Ismail Mayet, Freddy B Mbumba, Aemero Abateneh Mengesha, Edoardo Midena, Furahini G. Mndeme, Ahmed Abdalla Mohamedani, Annette C. Moll, Claude Moreira, Mchikirwa S Msina, Gerald Msukwa, Kangwa I. M. Muma, Gabriela Murgoi, Kareem O. Musa, Hamzah Mustak, Okwen M Muyen, Gita Naidu, Л. В. Науменко, P.A. Ndoye Roth, В. В. Нероев, Marina Nikitović, Elizabeth Dennis Nkanga, Henry Nkumbe, Mutale Nyaywa, Ghislaine Obono-Obiang, Ngozi Oguego, Andrzej Olechowski, Alexander Oscar, P. Osei-Bonsu, Sally Painter, Vivian Paintsil, Luísa Oliveira de Paiva, Ruzanna Papyan, Raffaele Parrozzani, Manoj Parulekar, Katarzyna Pawińska-Wąsikowska, Sanja Perić, Remezo Philbert, Pavel Pochop, V. G. Polyakov, Manca Tekavčič Pompe, Jonathan Pons, Léa Raobela, Lorna Renner, David Reynders, Dahiru Ribadu, Mussagy M. Riheia, Petra Ritter‐Sovinz, S. V. Saakyan, Azza MA Said, Sonsoles San Román Pacheco, Trish A Scanlan, Judy Schoeman, Stefan Seregard, Sadik Taju Sherief, Sidi Sidi Cheikh, Sónia Silva, Tetyana Sorochynska, Grace Ssali, Christina Stathopoulos, Branka Stirn Kranjc, David Stones, Karel Švojgr, Fatoumata Sylla, Gevorg Tamamyan, Alketa Tandili, Bekim Tateshi, Tuyisabe Theophile, Fousseyni Traoré, Harba Tyau-Tyau, Ali Bala Umar, Steen F. Urbak, Т. Л. Ушакова, Sandra Valeiņa, Milo van Hoefen Wijsard, Nevyana Veleva, Maris Viksnins, Werner Wackernagel, Keith Waddell, Patricia Wade, Amina H Wali Nigeria, Amelia DC Wime, Charlotte Wolley-Dod, Jenny M Yanga, V.А. Yarovaya, А.А. Yarovoy, Ekhtelbenina Zein, Shirley Sharabi, Katsiaryna Zhilyaeva, Othman A. O. Ziko, Richard Bowman,

Hematopoietic Stem Cell Transplantation

The travel distance from home to a treatment centre, which may impact the stage at diagnosis, has not been investigated for retinoblastoma, the most common childhood eye cancer. We aimed to investigate the travel burden and its impact on clinical presentation in a large sample of patients with retinoblastoma from Africa and Europe.A cross-sectional analysis including 518 treatment-naïve patients with retinoblastoma residing in 40 European countries and 1024 treatment-naïve patients with retinoblastoma residing in 43 African countries.Capture rate was 42.2% of expected patients from Africa and 108.8% from Europe. African patients were older (95% CI -12.4 to -5.4, p<0.001), had fewer cases of familial retinoblastoma (95% CI 2.0 to 5.3, p<0.001) and presented with more advanced disease (95% CI 6.0 to 9.8, p<0.001); 43.4% and 15.4% of Africans had extraocular retinoblastoma and distant metastasis at the time of diagnosis, respectively, compared to 2.9% and 1.0% of the Europeans. To reach a retinoblastoma centre, European patients travelled 421.8 km compared to Africans who travelled 185.7 km (p<0.001). On regression analysis, lower-national income level, African residence and older age (p<0.001), but not travel distance (p=0.19), were risk factors for advanced disease.Fewer than half the expected number of patients with retinoblastoma presented to African referral centres in 2017, suggesting poor awareness or other barriers to access. Despite the relatively shorter distance travelled by African patients, they presented with later-stage disease. Health education about retinoblastoma is needed for carers and health workers in Africa in order to increase capture rate and promote early referral.