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

Ido Didi Fabian ; Andrew W Stacey ; Allen Foster

; Tero T Kivelä ; Francis L Munier ; Naama Keren-Froim ; Nir Gomel ; Nathalie Cassoux ; Mandeep S Sagoo ; M Ashwin Reddy ; +193 more... Lamis Al Harby ; Marcia Zondervan

; Covadonga Bascaran

; Elhassan Abdallah ; Shehu U Abdullahi ; Sahadatou Adamou Boubacar ; Dupe S Ademola-Popoola ; Adedayo Adio ; Ada E Aghaji ; Silvia Alarcón Portabella ; Amadou I Alfa Bio ; Amany M Ali ; Donjeta B Alia ; Charlotta All-Eriksson ; Argentino A Almeida ; Khalifa M Alsawidi ; Romanzo Antonino ; Nicholas J Astbury

; Rose Atsiaya ; Julia Balaguer ; Walentyna Balwierz ; Honorio Barranco ; Maja Beck Popovic ; Sarra Benmiloud ; Nissrine Bennani Guebessi ; Rokia C Berete ; Shelley J Biddulph ; Eva M Biewald ; Sharon Blum ; Nadia Bobrova ; Marianna Boehme ; Norbert Bornfeld ; Gabrielle C Bouda ; Hédi Bouguila ; Amaria Boumedane ; Bénédicte G Brichard ; Michael Capra L ; Guilherme Castela ; Jaume Català-Mora ; Guillermo L Chantada ; Violeta S Chernodrinska ; Faraja S Chiwanga ; Krzysztof Cieslik ; Codruta Comsa ; Maria G Correa Llano ; Monika Csóka ; Isac V Da Gama ; Alan Davidson ; Patrick De Potter ; Laurence Desjardins ; Monica D Dragomir ; Magritha Du Bruyn ; Asmaa El Kettani ; Amal M Elbahi ; Dina Elgalaly ; Alaa M Elhaddad ; Moawia M Ali Elhassan ; Mahmoud M Elzembely ; Vera A Essuman ; Ted Grimbert A Evina ; Oluyemi Fasina ; Ana Fernández-Teijeiro ; Moira Gandiwa ; David García Aldana ; Jennifer A Geel ; Zelalem Gizachew ; Pernille A Gregersen ; Koffi M Guedenon ; Theodora Hadjistilianou ; Sadiq Hassan ; Stanislava Hederova ; Laila Hessissen ; Diriba F Hordofa ; Marlies Hummlen ; Kristina Husakova ; Russo Ida ; Vesna R Ilic ; Helen Jenkinson ; Theophile B Amani Kabesha ; Rolande L Kabore ; Abubakar Kalinaki ; Noa Kapelushnik ; Tamar Kardava ; Pavlin Kroumov Kemilev ; Tomas Kepak ; Zaza Khotenashvili ; Artur Klett ; Jess Elio Kosh Komba Palet ; Dalia Krivaitiene ; Mariana Kruger ; Alice Kyara ; Eva S Lachmann ; Slobodanka Latinović ; Karin Lecuona ; Robert M Lukamba ; Livia Lumbroso ; Lesia Lysytsia ; Erika Maka ; Mayuri Makan ; Chatonda Manda ; Nieves Martín Begue ; Ibrahim O Matende ; Marchelo Matua ; Ismail Mayet ; Freddy B Mbumba ; Aemero A Mengesha ; Edoardo Midena ; Furahini G Mndeme ; Ahmed A Mohamedani ; Annette C Moll ; Claude Moreira ; Mchikirwa S Msina ; Gerald Msukwa ; Kangwa I Muma ; Gabriela Murgoi ; Kareem O Musa ; Hamzah Mustak ; Okwen M Muyen ; Gita Naidu ; Larisa Naumenko ; Paule Aïda Ndoye Roth ; Vladimir Neroev ; Marina Nikitovic ; Elizabeth D Nkanga ; Henry Nkumbe ; Mutale Nyaywa ; Ghislaine Obono-Obiang ; Ngozi C Oguego ; Andrzej Olechowski ; Alexander Hugo Oscar ; Peter Osei-Bonsu ; Sally L Painter ; Vivian Paintsil ; Luisa Paiva ; Ruzanna Papyan ; Raffaele Parrozzani ; Manoj Parulekar ; Katarzyna Pawinska-Wasikowska ; Sanja Perić ; Remezo Philbert ; Pavel Pochop ; Vladimir G Polyakov ; Manca T Pompe ; Jonathan J Pons ; Léa Raobela ; Lorna A Renner ; David Reynders ; Dahiru Ribadu ; Mussagy M Riheia ; Petra Ritter-Sovinz ; Svetlana Saakyan ; Azza Ma Said ; Sonsoles San Román Pacheco ; Trish A Scanlan ; Judy Schoeman ; Stefan Seregard ; Sadik T Sherief ; Sidi Sidi Cheikh ; Sónia Silva ; Tetyana Sorochynska ; Grace Ssali ; Christina Stathopoulos ; Branka Stirn Kranjc ; David K Stones ; Karel Svojgr ; Fatoumata Sylla ; Gevorg Tamamyan ; Alketa Tandili ; Bekim Tateshi ; Tuyisabe Theophile ; Fousseyni Traoré ; Harba Tyau-Tyau ; Ali B Umar ; Steen F Urbak ; Tatiana L Ushakova ; Sandra Valeina ; Milo van Hoefen Wijsard ; Nevyana V Veleva-Krasteva ; Maris Viksnins ; Werner Wackernagel ; Keith Waddell ; Patricia D Wade ; Amina H Wali Nigeria ; Amelia Dc Wime ; Charlotte Wolley Dod ; Jenny M Yanga ; Vera A Yarovaya ; Andrey A Yarovoy ; Ekhtelbenina Zein ; Shirley Sharabi ; Katsiaryna Zhilyaeva ; Othman Ao Ziko ; Richard Bowman

; (2020) Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries. The British journal of ophthalmology, 105 (10). pp. 1435-1443. ISSN 0007-1161 DOI: 10.1136/bjophthalmol-2020-316613

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BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.