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3. Chemotherapy supply chain management, safe-handling and disposal in Ethiopia: the case of Tikur Anbessa specialized hospital.

Author

Fentie, Atalay Mulu, Mekonen, Zelalem Tilahun, Gizachew, Zelalem, Hailemariam, Mahlet, Clark, Stephen M., Richardson, Jaime, and Muluneh, Benyam

Subjects
SUPPLY chain management, DRUG disposal, MEDICAL personnel, DRUG utilization, CANCER chemotherapy, PERSONAL protective equipment
Abstract

Optimal chemotherapy management is substandard in low and middle-income countries. We aimed to identify major gaps to design interventional strategies for improved chemotherapy management at Tikur Anbessa Specialized Hospital (TASH), Ethiopia. This study was conducted using an observational checklist, open-ended questions, record review, and key informant interviews of department heads and focal persons at TASH. Findings were categorized into specific themes that developed. Chemotherapy represented 60.2% of the hospital medication budget. Drug utilization was quantified via monthly consumption documentation and forecasting. However, unreliable data resulted in frequent stockouts (unavailability of the item when it is needed) of chemotherapy with only 67.8% availability. Thirteen healthcare personnel (9 nurses, 2 pharmacists and 2 hospital cleaners) were interviewed: all clinical staff but neither of hospital cleaners believed that they were at risk of hazardous agents. Challenges identified included inadequate and frequent stockouts (unavailability of the item when it is needed) of personal protective equipment, lack of standardized guidelines for chemotherapy handling, admixture, and disposal, lack of designated preparation rooms, and lack of training. All nine nurses handled chemotherapy admixtures despite only two nurses previously receiving in-service training. Most of the participants had never witnessed the disposal of anticancer drugs. Prompted by the results of this study, a dialogue was initiated among members of TASH, the American Cancer Society and the University of North Carolina to implement action-oriented projects to address the gaps identified at TASH. These gaps directly and indirectly affect care and treatment outcomes of patients at a large cancer center. Collaborations with well-resourced centers are potential models for improving chemotherapy management. [ABSTRACT FROM AUTHOR]

Published
2023
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4. Limitations in Cataract Surgical Services in Children in Ethiopia: A Nationwide Survey of Pediatric Cataract Surgeons

Author

Asferaw, Mulusew, primary, Tolesa, Kumale, additional, Sherief, Sadik Taju, additional, Tadegagne, Bezawit, additional, Sintayehu, Mandefro, additional, Worku, Addisu, additional, Wondale, Teshager, additional, Girma, Emebet, additional, Gizachew, Zelalem, additional, Gilbert, Clare, additional, and Woodruff, Geoffrey, additional

Published
2021
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5. Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries

Author

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

Published
2020
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6. Central corneal thickness among glaucoma patients attending Menelik II Hospital, Addis Ababa, Ethiopia

Author

Mulugeta, Abiy and Gizachew, Zelalem

Subjects
Central corneal thickness glaucoma, intraocular pressure, pachymetry
Abstract

Background: Glaucoma is one of the leading causes of blindness. Intra-ocular pressure is the main and only manageable of all risk factors for glaucoma. The central corneal thickness has been shown to affect the intra-ocular pressure measurement and is different among different ethnic population and subtypes of glaucoma. The central corneal thickness of different subtypes of glaucoma at Menelik II Hospital has not been determined.Objective: The objective of this study was to measure the mean central corneal thickness of different sub types of glaucoma and ocular hypertension of patients attending Menelik Hospital.Participants and Methods: A cross sectional comparative hospital-based study was carried out at the glaucoma clinic of Menelik ΙΙ Hospital to assess the pattern of central corneal thickness of patients with different subtypes of glaucoma from 01 May 2014 to 30 August 2014. Central corneal thickness was determined by taking average of six measurements using ultrasonic Pachymetry. All consecutive open angle glaucoma patients and age matched non-glaucoma patients were included in the study. Eyes with incisional surgery, corneal diseases or trauma were excluded. Data was collected entered, cleaned and analyzed using SPSS windows version 16. Level of significance was taken at 5% for association of corneal thickness measurement and glaucoma subtypes.Results: One hundred fourteen patients were examined. Twenty-three had primary open angle glaucoma, 16 had pseudoexfoliative glaucoma, 15 had Ocular hypertension, 32 had Normal tension glaucoma, and 28 were non-glaucoma patients. The mean Central corneal thickness for the group with Ocular hypertension, Primary open angle glaucoma, Pseudoexfoliative glaucoma, Normal tension glaucoma and non- glaucoma was 562.5±24.5μm, 517.5±27.5μm, 512.5±32.1μm, 488.0±32.4 μm, and 516.2±23.4μm respectively. Mean central corneal thickness in the ocular hypertension group was significantly higher (P

Published
2018

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

Author

Fabian, Ido Didi, Stacey, Andrew W, Foster, Allen, Kivela¨, 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 Ai¨da, 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, and Bowman, Richard

Abstract

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-nai¨ve patients with retinoblastoma residing in 40 European countries and 1024 treatment-nai¨ve 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.

Published
2021
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9. Global Retinoblastoma Presentation and Analysis by National Income Level

Author

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

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.

Published
2020
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