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Risk factors associated with abandonment of care in retinoblastoma: analysis of 692 patients from 10 countries
  1. Thamanna Nishath1,
  2. Xiudi Li2,
  3. Arthika Chandramohan3,
  4. Megan Othus2,
  5. Xunda Ji4,
  6. Yihua Zou4,
  7. Sadia Sultana5,
  8. Riffat Rashid5,
  9. Sadik Taju Sherief6,
  10. Nathalie Cassoux7,
  11. Juan Luis Garcia Leon8,
  12. Rosdali Díaz Coronado9,
  13. Arturo Manuel Zapata López9,
  14. Tatiana L Ushakova10,11,
  15. Vladimir G Polyakov12,13,
  16. Soma Rani Roy14,
  17. Alia Ahmad15,
  18. Ashwin Reddy16,17,
  19. Mandeep S Sagoo16,18,
  20. Lamis Al Harby19,20,
  21. Jonathan W Kim21,22,
  22. Jesse L Berry21,22,
  23. Ashley Polski21,22,
  24. Nick Astbury23,
  25. Cova Bascaran23,
  26. Sharon Blum24,
  27. Richard Bowman23,24,
  28. Matthew J Burton25,26,
  29. Allen Foster27,
  30. Nir Gomel28,29,
  31. Naama Keren-Froim24,
  32. Shiran Madgar30,
  33. Marcia Zondervan23,
  34. Swathi Kaliki31,
  35. Ido Didi Fabian23,32,
  36. Andrew Stacey1,3
  1. 1Department of Ophthalmology, University of Washington, Seattle, Washington, USA
  2. 2Department of Biostatistics, University of Washington, Seattle, Washington, USA
  3. 3Division of Ophthalmology, Seattle Children's Hospital, Seattle, Washington, USA
  4. 4Department of Ophthalmology, Xinhua Hospital Affiliated to Shanghai Jiaotong University School of Medicine, Yang Pu Qu, Shanghai, China
  5. 5Department of Oculoplasty and Ocular Oncology, Ispahani Islamia Eye Institute and Hospital, Dhaka, Bangladesh
  6. 6Department of Ophthalmology, Addis Ababa University, Addis Ababa, Ethiopia
  7. 7Department of Ophthalmology, Institut Curie, Universite de Paris UFR de Medecine de Paris Centre, Paris, France
  8. 8Anglo-American Clinic, Lima, Peru
  9. 9Instituto Nacional de Enfermedades Neoplasicas, Lima, Peru
  10. 10Head and Neck Tumors, SRI of Pediatric Oncology and Hematology of NN Blokhin National Medical Research Center Oncology of Russian Federation, Moscow, Russian Federation
  11. 11Pediatric Oncology, Medical Academy of Postgraduate Education, Moscow, Russian Federation
  12. 12Head 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. 13Russian Medical Academy of Postgraduate Education, Moscow, Russian Federation
  14. 14Chittagong Eye Infirmary and Training Complex, Chittagong, Bangladesh
  15. 15The Children’s Hospital and the Institute of Child Health, Lahore, Pakistan
  16. 16Ophthalmology, Barts Health NHS Trust, London, UK
  17. 17Paediatric Ophthalmology, Moorfields Eye Hospital NHS Foundation Trust, London, UK
  18. 18NIHR Biomedical Research Centre for Ophthalmology, Joint Library of Ophthalmology Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, UK
  19. 19Ocular Oncology, Moorfields Eye Hospital NHS Foundation Trust, London, UK
  20. 20Barts Health NHS Trust, The Royal London Hospital, London, UK
  21. 21USC Roski Eye Institute, University of Southern California Keck School of Medicine, Los Angeles, California, USA
  22. 22The Vision Center, Children’s Hospital Los Angeles, University of Southern California Keck School of Medicine, Los Angeles, California, USA
  23. 23International Centre for Eye Health, London School of Hygiene and Tropical Medicine, London, UK
  24. 24The Goldschleger Eye Institute, Sheba Medical Center, Tel Hashomer, Israel
  25. 25Clinical Research Department, London School of Hygiene and Tropical Medicine, London, UK
  26. 26UCL Institute of Ophthalmology, London, UK
  27. 27Clinical Research Department, Faculty of Infectious and Tropical Diseases, and International Centre for Eye Health, London School of Hygiene and Tropical Medicine, London, UK
  28. 28Sheba Medical Center at Tel Hashomer, Tel Hashomer, Israel
  29. 29Division of Ophthalmology, Tel Aviv University Sackler Faculty of Medicine, Tel Aviv, Israel
  30. 30Ophthalmology, Sheba Medical Center at Tel Hashomer, Tel Hashomer, Israel
  31. 31The Operation Eyesight Universal Institute for Eye Cancer, LV Prasad Eye Institute, Hyderabad, Telangana, India
  32. 32International Centre for Eye Health, London School of Hygiene & Tropical Medicine, London, UK
  1. Correspondence to Thamanna Nishath, Department of Ophthalmology, University of Washington, Seattle, Washington 98195, USA; tnishath{at}uw.edu

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.

  • Child health (paediatrics)
  • Epidemiology
  • Neoplasia
  • Public health
  • Retina

Data availability statement

Data are available upon reasonable request.

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Data availability statement

Data are available upon reasonable request.

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Footnotes

  • Contributors Conception and design of the study: AS. Data acquisition: XJ, YZ, SS, RR, STS, NC, JLGL, RYDC, AMZ, TLU, VGP, SRR, AA, MAR, MSS, LAH, JWK, JLB, AP, NA, CB, SB, RB, MJB, AF, NG, NK-F, SM, MZ, SK, IDF and AS. Statistical analysis: XL and MO. Data interpretation: TN, AS and XL. Initial drafting of the manuscript: TN, AS and AC. Guarantors: TN and AS.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.