Risk factors associated with abandonment of care in retinoblastoma: analysis of 692 patients from 10 countries

Thamanna Nishath; Xiudi Li; Arthika Chandramohan; Megan Othus; Xunda Ji; Yihua Zou; Sadia Sultana; Riffat Rashid; Sadik Taju Sherief; Nathalie Cassoux; Juan Luis Garcia Leon; Rosdali Díaz Coronado; Arturo Manuel Zapata López; Tatiana L Ushakova; Vladimir G Polyakov; Soma Rani Roy; Alia Ahmad; Ashwin Reddy; Mandeep S Sagoo; Lamis Al Harby; Jonathan W Kim; Jesse L Berry; Ashley Polski; Nick Astbury; Cova Bascaran; Sharon Blum; Richard Bowman; Matthew J Burton; Allen Foster; Nir Gomel; Naama Keren-Froim; Shiran Madgar; Marcia Zondervan; Swathi Kaliki; Ido Didi Fabian; Andrew Stacey

doi:10.1136/bjo-2022-321159

Risk factors associated with abandonment of care in retinoblastoma: analysis of 692 patients from 10 countries

Br J Ophthalmol. 2023 Nov 22;107(12):1818-1822. doi: 10.1136/bjo-2022-321159.

Authors

Thamanna Nishath¹, Xiudi Li², Arthika Chandramohan³, Megan Othus², Xunda Ji⁴, Yihua Zou⁴, Sadia Sultana⁵, Riffat Rashid⁵, Sadik Taju Sherief⁶, Nathalie Cassoux⁷, Juan Luis Garcia Leon⁸, Rosdali Díaz Coronado⁹, Arturo Manuel Zapata López⁹, Tatiana L Ushakova^{10

11}, Vladimir G Polyakov^{12

13}, Soma Rani Roy¹⁴, Alia Ahmad¹⁵, Ashwin Reddy^{16

17}, Mandeep S Sagoo^{16

18}, Lamis Al Harby^{19

20}, Jonathan W Kim^{21

22}, Jesse L Berry^{21

22}, Ashley Polski^{21

22}, Nick Astbury²³, Cova Bascaran²³, Sharon Blum²⁴, Richard Bowman^{23

24}, Matthew J Burton^{25

26}, Allen Foster²⁷, Nir Gomel^{28

29}, Naama Keren-Froim²⁴, Shiran Madgar³⁰, Marcia Zondervan²³, Swathi Kaliki³¹, Ido Didi Fabian^{23

32}, Andrew Stacey^{33

3}

Affiliations

¹ Department of Ophthalmology, University of Washington, Seattle, Washington, USA tnishath@uw.edu.
² Department of Biostatistics, University of Washington, Seattle, Washington, USA.
³ Division of Ophthalmology, Seattle Children's Hospital, Seattle, Washington, USA.
⁴ Department of Ophthalmology, Xinhua Hospital Affiliated to Shanghai Jiaotong University School of Medicine, Yang Pu Qu, Shanghai, China.
⁵ Department of Oculoplasty and Ocular Oncology, Ispahani Islamia Eye Institute and Hospital, Dhaka, Bangladesh.
⁶ Department of Ophthalmology, Addis Ababa University, Addis Ababa, Ethiopia.
⁷ Department of Ophthalmology, Institut Curie, Universite de Paris UFR de Medecine de Paris Centre, Paris, France.
⁸ Anglo-American Clinic, Lima, Peru.
⁹ Instituto Nacional de Enfermedades Neoplasicas, Lima, Peru.
¹⁰ Head and Neck Tumors, SRI of Pediatric Oncology and Hematology of NN Blokhin National Medical Research Center Oncology of Russian Federation, Moscow, Russian Federation.
¹¹ Pediatric Oncology, Medical Academy of Postgraduate Education, Moscow, Russian Federation.
¹² Head and Neck Tumors Department, SRI of Pediatric Oncology and Hematology of NN Blokhin National Medical Research Center Oncology of Russian Federation, Moscow, Russian Federation.
¹³ Russian Medical Academy of Postgraduate Education, Moscow, Russian Federation.
¹⁴ Chittagong Eye Infirmary and Training Complex, Chittagong, Bangladesh.
¹⁵ The Children's Hospital and the Institute of Child Health, Lahore, Pakistan.
¹⁶ Ophthalmology, Barts Health NHS Trust, London, UK.
¹⁷ Paediatric Ophthalmology, Moorfields Eye Hospital NHS Foundation Trust, London, UK.
¹⁸ NIHR Biomedical Research Centre for Ophthalmology, Joint Library of Ophthalmology Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, UK.
¹⁹ Ocular Oncology, Moorfields Eye Hospital NHS Foundation Trust, London, UK.
²⁰ Barts Health NHS Trust, The Royal London Hospital, London, UK.
²¹ USC Roski Eye Institute, University of Southern California Keck School of Medicine, Los Angeles, California, USA.
²² The Vision Center, Children's Hospital Los Angeles, University of Southern California Keck School of Medicine, Los Angeles, California, USA.
²³ International Centre for Eye Health, London School of Hygiene and Tropical Medicine, London, UK.
²⁴ The Goldschleger Eye Institute, Sheba Medical Center, Tel Hashomer, Israel.
²⁵ Clinical Research Department, London School of Hygiene and Tropical Medicine, London, UK.
²⁶ UCL Institute of Ophthalmology, London, UK.
²⁷ Clinical Research Department, Faculty of Infectious and Tropical Diseases, and International Centre for Eye Health, London School of Hygiene and Tropical Medicine, London, UK.
²⁸ Sheba Medical Center at Tel Hashomer, Tel Hashomer, Israel.
²⁹ Division of Ophthalmology, Tel Aviv University Sackler Faculty of Medicine, Tel Aviv, Israel.
³⁰ Ophthalmology, Sheba Medical Center at Tel Hashomer, Tel Hashomer, Israel.
³¹ The Operation Eyesight Universal Institute for Eye Cancer, LV Prasad Eye Institute, Hyderabad, Telangana, India.
³² International Centre for Eye Health, London School of Hygiene & Tropical Medicine, London, UK.
³³ Department of Ophthalmology, University of Washington, Seattle, Washington, USA.

Abstract

Background: Rates of care abandonment for retinoblastoma (RB) demonstrate significant geographical variation; however, other variables that place a patient at risk of abandoning care remain unclear. This study aims to identify the risk factors for care abandonment across a multinational set of patients.

Methods: A prospective, observational study of 692 patients from 11 RB centres in 10 countries was conducted from 1 January 2019 to 31 December 2019. Multivariate logistic regression was used to identify risk factors associated with higher rates of care abandonment.

Results: Logistic regression showed a higher risk of abandoning care based on country (high-risk countries include Bangladesh (OR=18.1), Pakistan (OR=45.5) and Peru (OR=9.23), p<0.001), female sex (OR=2.39, p=0.013) and advanced clinical stage (OR=4.22, p<0.001). Enucleation as primary treatment was not associated with a higher risk of care abandonment (OR=0.59, p=0.206).

Conclusion: Country, advanced disease and female sex were all associated with higher rates of abandonment. In this analysis, enucleation as the primary treatment was not associated with abandonment. Further research investigating cultural barriers can enable the building of targeted retention strategies unique to each country.

Keywords: Child health (paediatrics); Epidemiology; Neoplasia; Public health; Retina.

Publication types

Observational Study

MeSH terms

Female
Humans
Prospective Studies
Retinal Neoplasms* / epidemiology
Retinal Neoplasms* / therapy
Retinoblastoma* / epidemiology
Retinoblastoma* / therapy
Retrospective Studies
Risk Factors
Treatment Refusal

Grants and funding

K08 CA232344/CA/NCI NIH HHS/United States