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(Moorfields Eye Hospital NHS Foundation Trust), Andrew W. Stacey(University of Washington), Allen Foster(London School of Hygiene & Tropical Medicine), Tero Kivelä(University of Helsinki), Francis L. Munier(Fondation Asile des Aveugles), Naama Keren‐Froim(Tel Aviv University), Nir Gomel(Tel Aviv University), Nathalie Cassoux(Délégation Paris 5), Mandeep S. Sagoo(Moorfields Eye Hospital NHS Foundation Trust), M. Ashwin Reddy(Moorfields Eye Hospital NHS Foundation Trust), Lamis Al Harby(Moorfields Eye Hospital NHS Foundation Trust), Marcia Zondervan(London School of Hygiene & Tropical Medicine), Covadonga Bascarán(London School of Hygiene & Tropical Medicine), Abdallah Elhassan(Mohammed V University), Shehu U. Abdullahi(Aminu Kano Teaching Hospital), Sahadatou Adamou Boubacar(National Hospital Niamey), Dupe Ademola-Popoola(University of Ilorin Teaching Hospital), Adedayo Adio(University of Port Harcourt Teaching Hospital), AE Aghaji(University of Nigeria), S. Alarcón Portabella(Vall d'Hebron Hospital Universitari), Amadou I Alfa Bio(Université de Parakou), Amany Ali(Assiut University), Donjeta B. Alia(Mother Teresa Hospital), Charlotta All‐Eriksson(S:t Eriks Ögonsjukhus), Argentino A Almeida(Maputo Central Hospital), Khalifa M Alsawidi(University of Tripoli), Antonino Romanzo(Bambino Gesù Children's Hospital), Nick Astbury(London School of Hygiene & Tropical Medicine), Rose Atsiaya, Julia Balaguer(Hospital Universitari i Politècnic La Fe), Walentyna Balwierz(Jagiellonian University), Honorio Barranco(Hospital Universitari i Politècnic La Fe), Maja Beck‐Popovic(University Hospital of Lausanne), Sarra Benmiloud(Centre Hospitalier Universitaire Hassan II), Nissrine Bennani Guebessi(Centre Hospitalier Universitaire Ibn Rochd), R. Bérété(University Hospital Medical Center at Treichville), S J Biddulph(University of the Witwatersrand), Eva Biewald(University of Duisburg-Essen), Sharon Blum(Tel Aviv University), Nadia Bobrova(Filatov Institute of Eye Diseases and Tissue Therapy of the National Academy of Medical Sciences of Ukraine), Marianna Boehme(University of Duisburg-Essen), Norbert Bornfeld(University of Duisburg-Essen), Gabrielle Chantal Bouda(Centre Hospitalier Universitaire Yalgado Ouédraogo), H. Bouguila(Faculté de médecine de Tunis), Amaria Boumedane(Emir Abdelkader University of Islamic Sciences), Bénédicte G. Brichard(Cliniques Universitaires Saint-Luc), Michael Capra(Our Lady's Hospital), Guilherme Castela(Hospitais da Universidade de Coimbra), Jaume Catalá‐Mora(Hospital Sant Joan de Déu Barcelona), Guillermo Chantada(Hospital Sant Joan de Déu Barcelona), Violeta Chernodrinska(Alexandrovska Hospital), Faraja Chiwanga(Muhimbili National Hospital), Krzysztof Cieślik(Children's Memorial Health Institute), Codruta Comsa(Institutul Oncologic Bucuresti), Maria G. Correa Llano(Hospital Sant Joan de Déu Barcelona), Monika Csóka(Semmelweis University), Isac V. Da Gama(Maputo Central Hospital), Alan Davidson(University of Cape Town), Patrick De Potter(Cliniques Universitaires Saint-Luc), Laurence Desjardins(Institut Curie), Monica Dragomir(Institutul Oncologic Bucuresti), Magritha Du Bruyn(University of KwaZulu-Natal), A. El Kettani(Centre Hospitalier Universitaire Ibn Rochd), Amal Elbahi(University of Tripoli), Dina Elgalaly(Children Cancer Hospital), Alaa Elhaddad(Children Cancer Hospital), Moawia Mohammed Ali Elhassan(University of Gezira), Mahmoud M. Elzembely(Assiut University), Vera Adobea Essuman(University of Ghana), Ted Grimbert A Evina(African Institute for Mathematical Sciences), Oluyemi Fasina(University of Ibadan), Ana Fernández‐Teijeiro(Hospital Universitario Virgen Macarena), Moira Gandiwa(Queen Elizabeth Central Hospital), David García Aldana(Andalusian Health Service), Jennifer Geel(University of the Witwatersrand), Zelalem Gizachew(Addis Ababa University), Pernille Axél Gregersen(Aarhus University Hospital), K.M. Guedenon(Centre Hospitalier Universitaire de Tokoin), Theodora Hadjistilianou(University of Siena), Sadiq Hassan(Aminu Kano Teaching Hospital), Stanislava Hederová(University Hospital Bratislava), Laila Hessissen(Mohammed V University), Diriba F Hordofa(Jimma University), Marlies Hummlen(Oslo University Hospital), Kristína Husáková(University Hospital Bratislava), Ida Russo(Bambino Gesù Children's Hospital), Vesna R. Ilic(Oncology Institute of Vojvodina), Helen Jenkinson(Birmingham Children's Hospital), Théophile Kabesha(Université Officielle de Bukavu), Rolande Kaboré(Centre Hospitalier Universitaire Yalgado Ouédraogo), Abubakar Kalinaki(Makerere University), Noa Kapelushnik(Tel Aviv University), Tamar Kardava(National Center for Disease Control and Public Health), P. Kemilev(Alexandrovska Hospital), Tomáš Kepák(Masaryk University), Zaza Khotenashvili(National Center for Disease Control and Public Health), Artur Klett(East Tallinn Central Hospital), Jess Elio Kosh Komba Palet(University of Bangui), Dalia Krivaitienė(Vilnius University), Mariana Kruger(Stellenbosch University), Alice Kyara(Muhimbili National Hospital), Eva S. Lachmann(Universität Hamburg), Slobodanka Latinović(Klinički centar Vojvodine), Karin Lecuona(University of Cape Town), Robert Mbuli Lukamba(University of Lubumbashi), Livia Lumbroso-Le Rouïc(Institut Curie), Lesia Lysytsia, Erika Maka(Semmelweis University), Mayuri Makan(Parirenyatwa Hospital), Chatonda Manda(Queen Elizabeth Central Hospital), Nieves Martín Begué(Vall d'Hebron Hospital Universitari), Ibrahim Matende, Marchelo Matua(Mbarara National Referral Hospital), Ismail Mayet(University of the Witwatersrand), Freddy B Mbumba(Livingstone Hospital), Aemero Abateneh Mengesha(Jimma University), Edoardo Midena(University of Padua), Furahini Godfrey Mndeme(Kilimanjaro Christian Medical Centre), Ahmed Abdalla Mohamedani(University of Gezira), Annette C. Moll(Amsterdam University Medical Centers), Claude Moreira(Hôpital Aristide Le Dantec), Mchikirwa Msina(Kilimanjaro Christian Medical Centre), Gerald Msukwa(Queen Elizabeth Central Hospital), Kangwa I. M. Muma(Ministry of Health), Gabriela Murgoi(Institutul Oncologic Bucuresti), Kareem O. Musa(University of Lagos), Hamzah Mustak(University of Cape Town), Okwen M Muyen(University of Bamenda), Gita Naidu(University of the Witwatersrand), Л. В. Науменко(N.N. Alexandrov National Cancer Centre), P.A. Ndoye Roth(Cheikh Anta Diop University), В. В. Нероев(Helmholtz Moscow Research Institute of Eye Diseases), Marina Nikitović(Oncology Institute of Vojvodina), Elizabeth Dennis Nkanga(University of Calabar), Henry Nkumbe(African Institute for Mathematical Sciences), Mutale Nyaywa, Ghislaine Obono-Obiang(Libreville Hospital), Ngozi Oguego(University of Nigeria), Andrzej Olechowski(Children's Memorial Health Institute), Alexander Oscar(Alexandrovska Hospital), P. Osei-Bonsu(Komfo Anokye Teaching Hospital), Sally Painter(Birmingham Children's Hospital), Vivian Paintsil(Komfo Anokye Teaching Hospital), Luísa Oliveira de Paiva, Ruzanna Papyan(Yerevan State Medical University), Raffaele Parrozzani(University of Padua), Manoj Parulekar(Birmingham Children's Hospital), Katarzyna Pawińska-Wąsikowska(Jagiellonian University), Sanja Perić(University Hospital Centre Zagreb), Remezo Philbert(Republic of Burundi), Pavel Pochop(Charles University), V. G. Polyakov(Russian Medical Academy of Continuous Professional Education), Manca Tekavčič Pompe(Ljubljana University Medical Centre), Jonathan Pons(Good Shepherd College), Léa Raobela, Lorna Renner(University of Ghana), David Reynders(University of Pretoria), Dahiru Ribadu(Federal Medical Centre), Mussagy M. Riheia(Instituto Superior Politécnico de Manica), Petra Ritter‐Sovinz(Medical University of Graz), S. V. Saakyan(Helmholtz Moscow Research Institute of Eye Diseases), Azza MA Said(Ain Shams University), Sonsoles San Román Pacheco(Hospital Universitario La Paz), Trish A Scanlan(Muhimbili National Hospital), Judy Schoeman(University of Pretoria), Stefan Seregard(S:t Eriks Ögonsjukhus), Sadik Taju Sherief(Addis Ababa University), Sidi Sidi Cheikh(Université de Nouakchott), Sónia Silva(Hospitais da Universidade de Coimbra), T. A. Sorochynska(Filatov Institute of Eye Diseases and Tissue Therapy of the National Academy of Medical Sciences of Ukraine), Grace Ssali(Mulago Hospital), Christina Stathopoulos(Fondation Asile des Aveugles), Branka Stirn Kranjc(Ljubljana University Medical Centre), David Stones(University of the Free State), Karel Švojgr(Charles University), Fatoumata Sylla(Institut du Sahel), Gevorg Tamamyan(Yerevan State Medical University), Alketa Tandili(Mother Teresa Hospital), Bekim Tateshi, Tuyisabe Theophile(Catholic University of Kabgayi), Fousseyni Traoré, Harba Tyau-Tyau(Université Adam Barka d'Abéché), Ali Bala Umar(Aminu Kano Teaching Hospital), Steen F. Urbak(Aarhus University Hospital), Т. Л. Ушакова(Russian Medical Academy of Continuous Professional Education), Sandra Valeiņa(Children's Clinical University Hospital), Milo van Hoefen Wijsard(Amsterdam University Medical Centers), Nevyana Veleva(Alexandrovska Hospital), Maris Viksnins(Children's Clinical University Hospital), Werner Wackernagel(Medical University of Graz), Keith Waddell(Mbarara National Referral Hospital), Patricia Wade(Jos University Teaching Hospital), Amina H Wali Nigeria(National Eye Centre), Amelia DC Wime, Charlotte Wolley-Dod(Vall d'Hebron Hospital Universitari), Jenny M Yanga(University of Kinshasa), V.А. Yarovaya(Intersectoral Research and Technology Complex Eye Microsurgery), А.А. Yarovoy(Intersectoral Research and Technology Complex Eye Microsurgery), Ekhtelbenina Zein(Université de Nouakchott), Shirley Sharabi(Sheba Medical Center), Katsiaryna Zhilyaeva(N.N. Alexandrov National Cancer Centre), Othman A. O. Ziko(Ain Shams University), Richard Bowman(Great Ormond Street Hospital)
Cited by 33Open Access
Abstract
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.
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