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

Citation: 
Ido Didi Fabian1,2, Andrew W Stacey3, Allen Foster1, Tero T Kivelä4, Francis L. Munier5, Naama Keren-Froim6, Nir Gomel7, Nathalie Cassoux8, Mandeep S Sagoo9, M Ashwin Reddy10, Lamis Al Harby10, Marcia Zondervan1, Covadonga Bascaran1, Elhassan Abdallah11, Shehu U Abdullahi12, Sahadatou Adamou Boubacar13, Dupe S Ademola-Popoola14, Adedayo Adio15, Ada E Aghaji16, Silvia Alarcón Portabella17, Amadou I Alfa Bio18, Amany M Ali19, Donjeta B Alia20, Charlotta All-Eriksson21, Argentino A Almeida22, Khalifa M Alsawidi23, Romanzo Antonino24, Nicholas J Astbury1, Rose Atsiaya25, Julia Balaguer26, Walentyna Balwierz27, Honorio Barranco26, Maja Beck Popovic28, Sarra Benmiloud29, Nissrine Bennani Guebessi30, Rokia C Berete31, Shelley J Biddulph32, Eva M Biewald33, Sharon Blum2, Nadia Bobrova34, Marianna Boehme33, Norbert Bornfeld33, Gabrielle C Bouda35, Hédi Bouguila36, Amaria Boumedane37, Bénédicte G Brichard38, Michael Capra l39, Guilherme Castela40, Jaume Català-Mora41, Guillermo L Chantada41, Violeta S Chernodrinska42, Faraja S Chiwanga43, Krzysztof Cieslik44, Codruta Comsa45, Maria G Correa Llano41, Monika Csóka46, Isac V Da Gama47, Alan Davidson48, Patrick De Potter38, Laurence Desjardins49, Monica D Dragomir45, Magritha Du Bruyn50, Asmaa El Kettani30, Amal M Elbahi23, Dina Elgalaly51, Alaa M Elhaddad51, Moawia M Ali Elhassan52, Mahmoud M Elzembely19, Vera A Essuman53, Ted Grimbert A Evina54, Oluyemi Fasina55, Ana Fernández-Teijeiro56, Moira Gandiwa57, David García Aldana58, Jennifer A Geel32,59, Zelalem Gizachew60, Pernille A Gregersen61, Koffi M Guedenon62, Theodora Hadjistilianou63, Sadiq Hassan12, Stanislava Hederova64, Laila Hessissen65, Diriba F Hordofa66, Marlies Hummlen67, Kristina Husakova64, Russo Ida24, Vesna R Ilic68, Helen Jenkinson69, Theophile B Amani Kabesha70, Rolande L Kabore35, Abubakar Kalinaki71, Noa Kapelushnik2, Tamar Kardava72, Pavlin Kroumov Kemilev42, Tomas Kepak73, Zaza Khotenashvili72, Artur Klett74, Jess Elio Kosh Komba Palet75, Dalia Krivaitiene76, Mariana Kruger77, Alice Kyara43, Eva S Lachmann78, Slobodanka Latinović79, Karin Lecuona80, Robert M Lukamba81, Livia Lumbroso49, Lesia Lysytsia82, Erika Maka46, Mayuri Makan83, Chatonda Manda57, Nieves Martín Begue17, Ibrahim O Matende25, Marchelo Matua84, Ismail Mayet32, Freddy B Mbumba85, Aemero A Mengesha86, Edoardo Midena87, Furahini G Mndeme88, Ahmed A Mohamedani89, Annette C Moll90, Claude Moreira91, Mchikirwa S Msina88, Gerald Msukwa57, Kangwa I Muma92, Gabriela Murgoi45, Kareem O Musa93, Hamzah Mustak80, Okwen M Muyen94, Gita Naidu32, Larisa Naumenko95, Paule Aïda Ndoye Roth96, Vladimir Neroev97, Marina Nikitovic68, Elizabeth D Nkanga98, Henry Nkumbe54, Mutale Nyaywa99, Ghislaine Obono-Obiang100, Ngozi C Oguego16, Andrzej Olechowski44, Alexander Hugo Oscar42, Peter Osei-Bonsu101, Sally L Painter69, Vivian Paintsil101, Luisa Paiva102, Ruzanna Papyan103, Raffaele Parrozzani87, Manoj Parulekar69, Katarzyna Pawinska-Wasikowska27, Sanja Perić104, Remezo Philbert105, Pavel Pochop106, Vladimir G Polyakov107,108, Manca T Pompe109, Jonathan J Pons110, Léa Raobela111, Lorna A Renner112, David Reynders113, Dahiru Ribadu114, Mussagy M Riheia115, Petra Ritter-Sovinz116, Svetlana Saakyan97, Azza MA Said117, Sonsoles San Román Pacheco118, Trish A Scanlan43, Judy Schoeman113, Stefan Seregard21, Sadik T Sherief60, Sidi Sidi Cheikh119, Sónia Silva40, Tetyana Sorochynska34, Grace Ssali120, Christina Stathopoulos5, Branka Stirn Kranjc109, David K Stones121, Karel Svojgr122, Fatoumata Sylla123, Gevorg Tamamyan103, Alketa Tandili20, Bekim Tateshi124, Tuyisabe Theophile125, Fousseyni Traoré126, Harba Tyau-Tyau127, Ali B Umar12, Steen F Urbak128, Tatiana L Ushakova107,108, Sandra Valeina129, Milo van Hoefen Wijsard90, Nevyana V Veleva-Krasteva42, Maris Viksnins129, Werner Wackernagel130, Keith Waddell84, Patricia D Wade131, Amina H Wali Nigeria132, Amelia DC Wime102, Charlotte Wolley Dod17, Jenny M Yanga133, Vera A Yarovaya134, Andrey A Yarovoy134, Ekhtelbenina Zein135, Shirley Sharabi136, Katsiaryna Zhilyaeva95, Othman AO Ziko117, Richard Bowman137
Publication year: 
2020

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.

External link: 
http://scholar.google.com/scholar_url?url=https://bjo.bmj.com/content/early/2020...