Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries
Authors: Fabian Ido Didi , Stacey Andrew W , Foster Allen , Kivelä Tero T , Munier Francis L. , Keren-Froim Naama , Gomel Nir , Cassoux Nathalie , Sagoo Mandeep S , Reddy M Ashwin , Harby Lamis Al , Zondervan Marcia , Bascaran Covadonga , Abdallah Elhassan , Abdullahi Shehu U , Boubacar Sahadatou Adamou , Ademola-Popoola Dupe S , Adio Adedayo , Aghaji Ada E , Portabella Silvia Alarcón , Alfa Bio Amadou I , Ali Amany M , Alia Donjeta B , All-Eriksson Charlotta , Almeida Argentino A , Alsawidi Khalifa M , Antonino Romanzo , Astbury Nicholas J , Atsiaya Rose , Balaguer Julia , Balwierz Walentyna , Barranco Honorio , Popovic Maja Beck , Benmiloud Sarra , Guebessi Nissrine Bennani , Berete Rokia C , Biddulph Shelley J , Biewald Eva M , Blum Sharon , Bobrova Nadia , Boehme Marianna , Bornfeld Norbert , Bouda Gabrielle C , Bouguila Hédi , Boumedane Amaria , Brichard Bénédicte G , l Michael Capra , Castela Guilherme , Català-Mora Jaume , Chantada Guillermo L , Chernodrinska Violeta S , Chiwanga Faraja S , Cieslik Krzysztof , Comsa Codruta , Correa Llano Maria G , Csóka Monika , Da Gama Isac V , Davidson Alan , Potter Patrick De , Desjardins Laurence , Dragomir Monica D , Bruyn Magritha Du , Kettani Asmaa El , Elbahi Amal M , Elgalaly Dina , Elhaddad Alaa M , Ali Elhassan Moawia M , Elzembely Mahmoud M , Essuman Vera A , Evina Ted Grimbert A , Fasina Oluyemi , Fernández-Teijeiro Ana , Gandiwa Moira , Aldana David García , Geel Jennifer A , Gizachew Zelalem , Gregersen Pernille A , Guedenon Koffi M , Hadjistilianou Theodora , Hassan Sadiq , Hederova Stanislava , Hessissen Laila , Hordofa Diriba F , Hummlen Marlies , Husakova Kristina , Ida Russo , Ilic Vesna R , Jenkinson Helen , Amani Kabesha Theophile B , Kabore Rolande L , Kalinaki Abubakar , Kapelushnik Noa , Kardava Tamar , Kemilev Pavlin Kroumov , Kepak Tomas , Khotenashvili Zaza , Klett Artur , Kosh Komba Palet Jess Elio , Krivaitiene Dalia , Kruger Mariana , Kyara Alice , Lachmann Eva S , Latinović Slobodanka , Lecuona Karin , Lukamba Robert M , Lumbroso Livia , Lysytsia Lesia , Maka Erika , Makan Mayuri , Manda Chatonda , Begue Nieves Martín , Matende Ibrahim O , Matua Marchelo , Mayet Ismail , Mbumba Freddy B , Mengesha Aemero A , Midena Edoardo , Mndeme Furahini G , Mohamedani Ahmed A , Moll Annette C , Moreira Claude , Msina Mchikirwa S , Msukwa Gerald , Muma Kangwa I , Murgoi Gabriela , Musa Kareem O , Mustak Hamzah , Muyen Okwen M , Naidu Gita , Naumenko Larisa , Ndoye Roth Paule Aïda , Neroev Vladimir , Nikitovic Marina , Nkanga Elizabeth D , Nkumbe Henry , Nyaywa Mutale , Obono-Obiang Ghislaine , Oguego Ngozi C , Olechowski Andrzej , Oscar Alexander Hugo , Osei-Bonsu Peter , Painter Sally L , Paintsil Vivian , Paiva Luisa , Papyan Ruzanna , Parrozzani Raffaele , Parulekar Manoj , Pawinska-Wasikowska Katarzyna , Perić Sanja , Philbert Remezo , Pochop Pavel , Polyakov Vladimir G , Pompe Manca T , Pons Jonathan J , Raobela Léa , Renner Lorna A , Reynders David , Ribadu Dahiru , Riheia Mussagy M , Ritter-Sovinz Petra , Saakyan Svetlana , Said Azza MA , Román Pacheco Sonsoles San , Scanlan Trish A , Schoeman Judy , Seregard Stefan , Sherief Sadik T , Cheikh Sidi Sidi , Silva Sónia , Sorochynska Tetyana , Ssali Grace , Stathopoulos Christina , Kranjc Branka Stirn , Stones David K , Svojgr Karel , Sylla Fatoumata , Tamamyan Gevorg , Tandili Alketa , Tateshi Bekim , Theophile Tuyisabe , Traoré Fousseyni , Tyau-Tyau Harba , Umar Ali B , Urbak Steen F , Ushakova Tatiana L , Valeina Sandra , Hoefen Wijsard Milo van , Veleva-Krasteva Nevyana V , Viksnins Maris , Wackernagel Werner , Waddell Keith , Wade Patricia D , Wali Nigeria Amina H , Wime Amelia DC , Dod Charlotte Wolley , Yanga Jenny M , Yarovaya Vera A , Yarovoy Andrey A , Zein Ekhtelbenina , Sharabi Shirley , Zhilyaeva Katsiaryna , Ziko Othman AO , Bowman Richard 
Published: September 2020

BackgroundThe 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.MethodsA 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.ResultsCapture 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.ConclusionsFewer 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.