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.

Abii Specialists Hospital Bamenda Cameroon

Addis Ababa University School of Medicine Department of Ophthalmology Addis Ababa Ethiopia

Africa Institute of Tropical Ophtalmology Bamako Mali

Arthur Davison Children's Hospital Ndola Zambia

Assistante Hospitalo Universitaire Faculte de Medecine de Nouakchott Medecin Oncopediatre Center National d'Oncologie Nouakchott Mauritania

Bambino Gesù IRCCS Children's Hospital Rome Italy

Bayero University Aminu Kano Teaching Hospital Kano Nigeria

Beira Central Hospital Beira Mozambique

Birmingham Children's Hospital Eye Department Birmingham Women's and Children's NHS Foundation Trust Birmingham UK

Botswana Government Scottish Livingstone Hospital Molepolole Botswana

Bukavu Eye Clinic Bukavu Official University Bukavu DRC

Calabar Children's Eye Center Department of Ophthalmology University of Calabar Teaching Hospital Calabar Cross River State Nigeria

Center Hospitalier et Universitaire Ibn Rochd Casablanca Morocco

Center Hospitalier Universitaire Joseph Ravoahangy Andrianavalona Antananarivo Madagascar

Center Hospitalier Universitaire Yalgado Ouédraogo de Ouagadougou Ouagadougou Burkina Faso

Center Hospitaliere Universitaire de Kamenge Bujumbura Burundi

Centro Hospital Universitário de Coimbra University of Coimbra Coimbra Portugal

Charlotte Maxeke Johannesburg Academic Hospital Johannesburg South Africa

Cheikh Anta DIOP University of Dakar Le Dantec Hospital Dakar Senegal

Chidren's Ophthalmology Department Chidren's Hospital of Vilnius University Hospital Santaros Clinic Vilnius Lithuania

Children's Cancer Hospital Egypt 57357 Cairo Egypt

Children's Clinical University Hospital Riga Latvia

Chu Angondje Cancerologie Libreville Gabon

Clinical Center Of Vojvodina University Eye Clinic Eye Research Foundation Vidar Latinović Novi Sad Serbia

Cliniques Universitaires Saint Luc Brussel Belgium

Département de Pédiatrie CHU Sylvanus Olympio Université de Lomé Lomé Togo

Department of Clinical Genetics and Center for Rare Disorders Aarhus University Hopspital Aarhus Denmark

Department of ophthalmology Aarhus University Hospital Aarhus Denmark

Department of Ophthalmology Amsterdam UMC Amsterdam Netherlands

Department of Ophthalmology College of Medicine University of Nigeria Enugu Nigeria

Department of Ophthalmology for Children and Adults 2nd Faculty of Medicine Charles University Prague and Motol University Hospital Prague Czech Republic

Department of Ophthalmology Jimma University Jimma Ethiopia

Department of Ophthalmology Lagos University Teaching Hospital College of Medicine of the University of Lagos Lagos Nigeria

Department of Ophthalmology Medical University Graz Graz Austria

Department of Ophthalmology Oslo University Hospital Oslo Norway

Department of Ophthalmology The Children's Memorial Health Institute Warsaw Poland

Department of Ophthalmology University College Hospital University of Ibadan Ibadan Oyo State Nigeria

Department of Ophthalmology University of Padova Padova Italy

Department of Ophthalmology University of Port Harcourt Teaching Hospital Port Harcourt Nigeria

Department of Ophthalmology University of Washington Seattle WA US

Department of Paediatrics and Child Health Faculty of Medicine and Health Sciences Stellenbosch University Stellenbosch South Africa

Department of Paediatrics and Child Health University of the Free Sate Bloemfontein South Africa

Department of Pediatric Hematology and Oncology 2nd Faculty of Medicine Charles University Prague and Motol University Hospital Prague Czech Republic

Department of Pediatric Oncology University Hassan 2 Fès Fez Morocco

Department of Pediatric Ophthalmology Hospital Vall d'Hebron Barcelona Spain

Department of Pediatrics and Adolescent Medicine Division of Pediatric Hematology Oncology Medical University of Graz Graz Austria

Department of Pediatrics and Child Health Jimma University Medical Center Jimma Ethiopia

Division of Ophthalmology Tel Aviv Sourasky Medical Center Sackler Faculty of Medicine Tel Aviv University Tel Aviv Israel

Division of Ophthalmology University of Cape Town Cape Town South Africa

East Tallinn Central Hospital Tallinn Estonia

Etablissement Hospitalière Spécialise Emir Abdelkader CEA Service d'Oncologie Pédiatrique Oran Algeria

Eye Clinic University Hospital 'Alexandrovska' Department of Ophthalmology Medical University Sofia Bulgaria

Federal Medical Center Yola Nigeria

Good Shepherd Hospital Siteki Swaziland

Head and Neck Tumors Department SRI of Pediatric Oncology and Hematology of N N Blokhin National Medical Research Center of Oncology of Russian Federation Moscow Russian Federation

Hospital Sant Joan de Déu Barcelona Spain

Hospital Universitario Virgen Macarena Sevilla Spain

Institut curie Paris France

Institut curie université de Paris medicine Paris 5 Descartes Paris France

Institut Hédi Raïs d'Ophtalmologie de Tunis Faculté de Médecine de Tunis Université Tunis El Manar Tunis Tunisia

Institute for Oncology and Radiology Belgrade Serbia

Institute of Pediatrics Jagiellonian University Medical College Childrens University Hospital of Krakow Krakow Poland

International Centre for Eye Health London School of Hygiene and Tropical Medicine London UK

Jos University Teaching Hospital Jos Nigeria

Jules Gonin Eye Hospital Fondation Asile de Aveugles University of Lausanne Lausanne Switzerland

Kabgayi Eye Unit Gitarama Rwanda

Kilimanjaro Christian Medical Center Moshi Tanzania

Komfo Anokye Teaching Hospital Kumasi Ghana

Light House For Christ Eye Center Mombasa Kenya

Lions Sight 1st Eye Hospital Queen Elizabeth Central Hospital Blantyre Malawi

Magrabi ICO Cameroon Eye Institute Yaounde Cameroon

Makerere University College of Health Sciences Department of Ophthalmology Kamplala Uganda

Medical Academy of Postgraduate Education Moscow Russia

Ministry of Health Lusaka Zambia

Moscow Helmholtz Research Institute of Eye Diseases Moscow Russia

Muhimbili National Hospital Dar es Salaam Tanzania

Mulago National Referral and Teaching Hospital Kamplala Uganda

N N Alexandrov National Cancer Center of Belarus Minsk Belarus

Nampula central hospital Nampula Mozambique

National Eye Center Kaduna Kaduna Nigeria

National Hospital of Niamey Niamey Niger

National Ophthalmological Institute of Angola Luanda Angola

NIHR Biomedical Research Center for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology and London Retinoblastoma Service Royal London Hospital London UK

Ocular Oncology Service Department of Ophthalmology University of Helsinki and Helsinki University Hospital Helsinki Finland

Oncologue Pédiatre Responsable d'Unité de Bangui Bangui Central African Republic

Oncology Department National Cancer Institute University of Gezira Wadi Madani Sudan

Oncology Institute 'Prof Dr Al Trestioreanu' Bucharest Romania

Ophthalmologic Department of the Teaching Hospital of Treichville Abidjan Côte d'ivoire

Ophthalmology Department Central Children's Hospital of Georgia Tbilisi Georgia

Ophthalmology Department Faculty of Medicine Ain Shams University Cairo Egypt

Ophthalmology Department Great Ormond Street Children's Hospital London UK

Ophthalmology department Nouakchott Medical University Nouakchott Mauritania

Ophthalmology Department of Rabat Mohammed 5 university Rabat Morocco

Ophthalmology Unit Department of Surgery School of Medicine and Dentistry University of Ghana Accra Ghana

Our Lady's Children's Hospital Dublin Ireland

Pathology Department Faculty of Medicine University of Gezira Wadi Madani Sudan

Pediatric Hemato Oncology Hospital Universitario Infantil La Paz Madrid Spain

Pediatric Hematology and Oncology Department of Rabat Mohammed 5 University Rabat Morocco

Pediatric Oncology Department South Egypt Cancer Institute Assiut University Assiut Egypt

Pediatric Oncology Service Gabriel Toure Hospital Bamako Mali

Pediatric Oncology Unit Hospital Universitario y Politécnico La Fe Valencia Spain

Quelimane central Hospital Quelimane Mozambique

Radiology Department Sheba Medical Center Ramat Gan Israel

Red Cross Children's War Memorial Hospital and the University of Cape Town Cape Town South Africa

Retinoblastoma referral center University of Siena Siena Italy

Ruharo Eye Hospital Mbarara Uganda

S Fyodorov Eye Microsurgery Federal State Institution Moscow Russia

Sackler Faculty of Medicine Tel Aviv University Tel Aviv Israel

Sekuru Kaguvi Eye Unit Parirenyatwa Group of Hospitals Harare Zimbabwe

Semmelweis University Budapest Budapest Hungary

Service d'oncologie pédiatrique de l'hôpital Aristide le Dantec Dakar Senegal

Service d'Ophtalmologie Cliniques Universitaires de Kinshasa Université de Kinshasa Kinshasa DRC

Servicio Andaluz de Salud Sevilla Spain

St Erik Eye Hospital Stockholn Sweden

The Filatov Institute of Eye diseases and Tissue Therapy Odessa Ukraine

The Goldschleger Eye Institute Sheba Medical Center Tel Hashomer Tel Aviv University Tel Aviv Israel

The Okhmatdyt National Children's Hospital Kiev Ukraine

The Royal London Hospital Barts Health NHS Trust and Moorfields Eye Hospital NHS Foundation Trust London UK

Tripoli Eye Hospital Tripoli University Tripoli Libya

Unit of Pediatric Hematology Oncology University Hospital CHUV Lausanne Switzerland

Univ Medical Center Ljubljana Univ Eye Hospital Ljubljana Ljubljana Slovenia

Université Adam Barka Adam Barka Chad

University Childrens' Hospital Bratislava Slovakia

University Clinics of Lubumbashi University of Lubumbashi Lubumbashi DRC

University Eye Clinic Skopje Macedonia

University Hospital Brno Masaryk University and ICRC St Anna University Hospital Brno Czech Republic

University Hospital Center 'Mother Theresa' Tirana Albania

University Hospital Center Zagreb Zagreb Croatia

University Hospital Essen Department of Ophthalmology University Duisburg Essen Essen Germany

University Hospital Hamburg Eppendorf Hamburg Germany

University of Ghana School of Medicine and Dentistry Korle Bu Teaching Hospital Accra Ghana

University of Ilorin and University of IlorinTeaching Hospital Ilorin Kwara State Nigeria

University of KwaZulu Natal Durban South Africa

University of Parakou Parakou Benin

University of Pretoria Pretoria South Africa

University of the Witwatersrand Johannesburg South Africa

Yerevan State Medical University Department of Oncology and Pediatric Cancer and Blood Disorders Center of Armenia Hematology Center after R H Yeolyan Yerevan Armenia

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