Dataset Information

Global Retinoblastoma Presentation and Analysis by National Income Level.

ABSTRACT: Importance:Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives:To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants:A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures:Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results:The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n?=?3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n?=?2638 [62.8%]), followed by strabismus (n?=?429 [10.2%]) and proptosis (n?=?309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance:This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs.

SUBMITTER: Global Retinoblastoma Study Group

PROVIDER: S-EPMC7047856 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Global Retinoblastoma Presentation and Analysis by National Income Level.

Fabian Ido Didi ID Abdallah Elhassan E Abdullahi Shehu U SU Abdulqader Rula A RA Adamou Boubacar Sahadatou S Ademola-Popoola Dupe S DS Adio Adedayo A Afshar Armin R AR Aggarwal Priyanka P Aghaji Ada E AE Ahmad Alia A Akib Marliyanti N R MNR Al Harby Lamis L Al Ani Mouroge H MH Alakbarova Aygun A Portabella Silvia Alarcón SA Al-Badri Safaa A F SAF Alcasabas Ana Patricia A APA Al-Dahmash Saad A SA Alejos Amanda A Alemany-Rubio Ernesto E Alfa Bio Amadou I AI Alfonso Carreras Yvania Y Al-Haddad Christiane C Al-Hussaini Hamoud H Y HHY Ali Amany M AM Alia Donjeta B DB Al-Jadiry Mazin F MF Al-Jumaily Usama U Alkatan Hind M HM All-Eriksson Charlotta C Al-Mafrachi Ali A R M AARM Almeida Argentino A AA Alsawidi Khalifa M KM Al-Shaheen Athar A S M AASM Al-Shammary Entissar H EH Amiruddin Primawita O PO Antonino Romanzo R Astbury Nicholas J NJ Atalay Hatice T HT Atchaneeyasakul La-Ongsri LO Atsiaya Rose R Attaseth Taweevat T Aung Than H TH Ayala Silvia S Baizakova Baglan B Balaguer Julia J Balayeva Ruhengiz R Balwierz Walentyna W Barranco Honorio H Bascaran Covadonga C Beck Popovic Maja M Benavides Raquel R Benmiloud Sarra S Bennani Guebessi Nissrine N Berete Rokia C RC Berry Jesse L JL Bhaduri Anirban A Bhat Sunil S Biddulph Shelley J SJ Biewald Eva M EM Bobrova Nadia N Boehme Marianna M Boldt H C HC Bonanomi Maria Teresa B C MTBC Bornfeld Norbert N Bouda Gabrielle C GC Bouguila Hédi H Boumedane Amaria A Brennan Rachel C RC Brichard Bénédicte G BG Buaboonnam Jassada J Calderón-Sotelo Patricia P Calle Jara Doris A DA Camuglia Jayne E JE Cano Miriam R MR Capra Michael M Cassoux Nathalie N Castela Guilherme G Castillo Luis L Català-Mora Jaume J Chantada Guillermo L GL Chaudhry Shabana S Chaugule Sonal S SS Chauhan Argudit A Chawla Bhavna B Chernodrinska Violeta S VS Chiwanga Faraja S FS Chuluunbat Tsengelmaa T Cieslik Krzysztof K Cockcroft Ruellyn L RL Comsa Codruta C Correa Zelia M ZM Correa Llano Maria G MG Corson Timothy W TW Cowan-Lyn Kristin E KE Csóka Monika M Cui Xuehao X Da Gama Isac V IV Dangboon Wantanee W Das Anirban A Das Sima S Davanzo Jacquelyn M JM Davidson Alan A De Potter Patrick P Delgado Karina Q KQ Demirci Hakan H Desjardins Laurence L Diaz Coronado Rosdali Y RY Dimaras Helen H Dodgshun Andrew J AJ Donaldson Craig C Donato Macedo Carla R CR Dragomir Monica D MD Du Yi Y Du Bruyn Magritha M Edison Kemala S KS Eka Sutyawan I Wayan IW El Kettani Asmaa A Elbahi Amal M AM Elder James E JE Elgalaly Dina D Elhaddad Alaa M AM Elhassan Moawia M Ali MMA Elzembely Mahmoud M MM Essuman Vera A VA Evina Ted Grimbert A TGA Fadoo Zehra Z Fandiño Adriana C AC Faranoush Mohammad M Fasina Oluyemi O Fernández Delia D P G DDPG Fernández-Teijeiro Ana A Foster Allen A Frenkel Shahar S Fu Ligia D LD Fuentes-Alabi Soad L SL Gallie Brenda L BL Gandiwa Moira M Garcia Juan L JL García Aldana David D Gassant Pascale Y PY Geel Jennifer A JA Ghassemi Fariba F Girón Ana V AV Gizachew Zelalem Z Goenz Marco A MA Gold Aaron S AS Goldberg-Lavid Maya M Gole Glen A GA Gomel Nir N Gonzalez Efren E Gonzalez Perez Graciela G González-Rodríguez Liudmira L Garcia Pacheco Henry N HN Graells Jaime J Green Liz L Gregersen Pernille A PA Grigorovski Nathalia D A K NDAK Guedenon Koffi M KM Gunasekera D Sanjeeva DS Gündüz Ahmet K AK Gupta Himika H Gupta Sanjiv S Hadjistilianou Theodora T Hamel Patrick P Hamid Syed A SA Hamzah Norhafizah N Hansen Eric D ED Harbour J William JW Hartnett M Elizabeth ME Hasanreisoglu Murat M Hassan Sadiq S Hassan Shadab S Hederova Stanislava S Hernandez Jose J Hernandez Lorelay Marie Carcamo LMC Hessissen Laila L Hordofa Diriba F DF Huang Laura C LC Hubbard G B GB Hummlen Marlies M Husakova Kristina K Hussein Al-Janabi Allawi N AN Ida Russo R Ilic Vesna R VR Jairaj Vivekaraj V Jeeva Irfan I Jenkinson Helen H Ji Xunda X Jo Dong Hyun DH Johnson Kenneth P KP Johnson William J WJ Jones Michael M MM Kabesha Theophile B Amani TBA Kabore Rolande L RL Kaliki Swathi S Kalinaki Abubakar A Kantar Mehmet M Kao Ling-Yuh LY Kardava Tamar T Kebudi Rejin R Kepak Tomas T Keren-Froim Naama N Khan Zohora J ZJ Khaqan Hussain A HA Khauv Phara P Kheir Wajiha J WJ Khetan Vikas V Khodabande Alireza A Khotenashvili Zaza Z Kim Jonathan W JW Kim Jeong Hun JH Kiratli Hayyam H Kivelä Tero T TT Klett Artur A Komba Palet Jess Elio Kosh JEK Krivaitiene Dalia D Kruger Mariana M Kulvichit Kittisak K Kuntorini Mayasari W MW Kyara Alice A Lachmann Eva S ES Lam Carol P S CPS Lam Geoffrey C GC Larson Scott A SA Latinovic Slobodanka S Laurenti Kelly D KD Le Bao Han A BHA Lecuona Karin K Leverant Amy A AA Li Cairui C Limbu Ben B Long Quah Boon QB López Juan P JP Lukamba Robert M RM Lumbroso Livia L Luna-Fineman Sandra S Lutfi Delfitri D Lysytsia Lesia L Magrath George N GN Mahajan Amita A Majeed Abdul Rahim AR Maka Erika E Makan Mayuri M Makimbetov Emil K EK Manda Chatonda C Martín Begue Nieves N Mason Lauren L Mason John O JO Matende Ibrahim O IO Materin Miguel M Mattosinho Clarissa C D S CCDS Matua Marchelo M Mayet Ismail I Mbumba Freddy B FB McKenzie John D JD Medina-Sanson Aurora A Mehrvar Azim A Mengesha Aemero A AA Menon Vikas V Mercado Gary John V D GJVD Mets Marilyn B MB Midena Edoardo E Mishra Divyansh K C DKC Mndeme Furahini G FG Mohamedani Ahmed A AA Mohammad Mona T MT Moll Annette C AC Montero Margarita M MM Morales Rosa A RA Moreira Claude C Mruthyunjaya Prithvi P Msina Mchikirwa S MS Msukwa Gerald G Mudaliar Sangeeta S SS Muma Kangwa I KI Munier Francis L FL Murgoi Gabriela G Murray Timothy G TG Musa Kareem O KO Mushtaq Asma A Mustak Hamzah H Muyen Okwen M OM Naidu Gita G Nair Akshay Gopinathan AG Naumenko Larisa L Ndoye Roth Paule Aïda PA Nency Yetty M YM Neroev Vladimir V Ngo Hang H Nieves Rosa M RM Nikitovic Marina M Nkanga Elizabeth D ED Nkumbe Henry H Nuruddin Murtuza M Nyaywa Mutale M Obono-Obiang Ghislaine G Oguego Ngozi C NC Olechowski Andrzej A Oliver Scott C N SCN Osei-Bonsu Peter P Ossandon Diego D Paez-Escamilla Manuel A MA Pagarra Halimah H Painter Sally L SL Paintsil Vivian V Paiva Luisa L Pal Bikramjit P BP Palanivelu Mahesh Shanmugam MS Papyan Ruzanna R Parrozzani Raffaele R Parulekar Manoj M Pascual Morales Claudia R CR Paton Katherine E KE Pawinska-Wasikowska Katarzyna K Pe'er Jacob J Peña Armando A Peric Sanja S Pham Chau T M CTM Philbert Remezo R Plager David A DA Pochop Pavel P Polania Rodrigo A RA Polyakov Vladimir G VG Pompe Manca T MT Pons Jonathan J JJ Prat Daphna D Prom Vireak V Purwanto Ignatius I Qadir Ali O AO Qayyum Seema S Qian Jiang J Rahman Ardizal A Rahman Salman S Rahmat Jamalia J Rajkarnikar Purnima P Ramanjulu Rajesh R Ramasubramanian Aparna A Ramirez-Ortiz Marco A MA Raobela Léa L Rashid Riffat R Reddy M Ashwin MA Reich Ehud E Renner Lorna A LA Reynders David D Ribadu Dahiru D Riheia Mussagy M MM Ritter-Sovinz Petra P Rojanaporn Duangnate D Romero Livia L Roy Soma R SR Saab Raya H RH Saakyan Svetlana S Sabhan Ahmed H AH Sagoo Mandeep S MS Said Azza M A AMA Saiju Rohit R Salas Beatriz B San Román Pacheco Sonsoles S Sánchez Gissela L GL Sayalith Phayvanh P Scanlan Trish A TA Schefler Amy C AC Schoeman Judy J Sedaghat Ahad A Seregard Stefan S Seth Rachna R Shah Ankoor S AS Shakoor Shawkat A SA Sharma Manoj K MK Sherief Sadik T ST Shetye Nandan G NG Shields Carol L CL Siddiqui Sorath Noorani SN Sidi Cheikh Sidi S Silva Sónia S Singh Arun D AD Singh Niharika N Singh Usha U Singha Penny P Sitorus Rita S RS Skalet Alison H AH Soebagjo Hendrian D HD Sorochynska Tetyana T Ssali Grace G Stacey Andrew W AW Staffieri Sandra E SE Stahl Erin D ED Stathopoulos Christina C Stirn Kranjc Branka B Stones David K DK Strahlendorf Caron C Suarez Maria Estela Coleoni MEC Sultana Sadia S Sun Xiantao X Sundy Meryl M Superstein Rosanne R Supriyadi Eddy E Surukrattanaskul Supawan S Suzuki Shigenobu S Svojgr Karel K Sylla Fatoumata F Tamamyan Gevorg G Tan Deborah D Tandili Alketa A Tarrillo Leiva Fanny F FF Tashvighi Maryam M Tateshi Bekim B Tehuteru Edi S ES Teixeira Luiz F LF Teh Kok Hoi KH Theophile Tuyisabe T Toledano Helen H Trang Doan L DL Traoré Fousseyni F Trichaiyaporn Sumalin S Tuncer Samuray S Tyau-Tyau Harba H Umar Ali B AB Unal Emel E Uner Ogul E OE Urbak Steen F SF Ushakova Tatiana L TL Usmanov Rustam H RH Valeina Sandra S van Hoefen Wijsard Milo M Varadisai Adisai A Vasquez Liliana L Vaughan Leon O LO Veleva-Krasteva Nevyana V NV Verma Nishant N Victor Andi A AA Viksnins Maris M Villacís Chafla Edwin G EG Vishnevskia-Dai Vicktoria V Vora Tushar T Wachtel Antonio E AE Wackernagel Werner W Waddell Keith K Wade Patricia D PD Wali Amina H AH Wang Yi-Zhuo YZ Weiss Avery A Wilson Matthew W MW Wime Amelia D C ADC Wiwatwongwana Atchareeya A Wiwatwongwana Damrong D Wolley Dod Charlotte C Wongwai Phanthipha P Xiang Daoman D Xiao Yishuang Y Yam Jason C JC Yang Huasheng H Yanga Jenny M JM Yaqub Muhammad A MA Yarovaya Vera A VA Yarovoy Andrey A AA Ye Huijing H Yousef Yacoub A YA Yuliawati Putu P Zapata López Arturo M AM Zein Ekhtelbenina E Zhang Chengyue C Zhang Yi Y Zhao Junyang J Zheng Xiaoyu X Zhilyaeva Katsiaryna K Zia Nida N Ziko Othman A O OAO Zondervan Marcia M Bowman Richard R

JAMA oncology 20200501 5

<h4>Importance</h4>Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale.<h4>Objectives</h4>To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables ...[more]

PMID: 32105305

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Global Retinoblastoma Presentation and Analysis by National Income Level.

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Global Retinoblastoma Presentation and Analysis by National Income Level.

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