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

Abstract

BackgroundRates 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.MethodsA 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.ResultsLogistic 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).ConclusionCountry, 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.

Global retinoblastoma studies: A review

“…The type of studies included focused group discussions, surveys, retrospective, prospective studies, and mixed method studies. Some studies were brought forward by dedicated groups such as Retinoblastoma International Collaborative Study Group, 8 Global Retinoblastoma Study Group, [9][10][11][12][13][14][15][16][17][18][19] American Academy of Ophthalmology-Ocular Oncology Taskforce (AAO-OOT), [20][21][22][23][24][25] Children's Oncology Group (COG), 26 and Global Health Research Group. 27,28 Overall, participating centres were located in Africa, Asia, Australia, North America, South America, and Europe; and from lowerincome, lower-middle-income, higher-middle-income, and high-income countries based on the nation's gross domestic product (GDP).…”

“…While RB care has shown improvement globally over the decades, the disparity between developed and developing nations has not narrowed accordingly 18 . For the first time, the Global RB Study group compared the clinical features at presentation in 4351 patients from 153 countries based on the national income level, during a single‐year time frame.…”

“…30 While RB care has shown improvement globally over the decades, the disparity between developed and developing nations has not narrowed accordingly. 18 For the first time, the Global RB Study group compared the clinical features at presentation in 4351 patients from 153 countries based on the national income level, during a single-year time frame. In this cohort, extraocular RB was observed in 49.1%, 27.0%, 12.0%, and 1.5% of all patients with RB in low-income countries (LIC), lower-middle-income countries (LMIC), higher middle-income countries (HMIC), and high-income countries (HIC), respectively.…”

“…This was more prevalent in specific countries like Pakistan, Bangladesh, and Peru, particularly among female gender and those with advanced disease stages. 18 This highlights the potential for collaboration between physicians and dedicated medico-social workers to address sociocultural barriers and improve adherence to care for children with RB.…”

Let's achieve a fair world for all children affected by retinoblastoma

“…3 We await a study of parents' reasons, using PROMs standards, to validate the results. Abandonment of care studies 15,16 largely surveyed the clinicians' opinions. Parents' reasons in their own words may be informative and even wise.…”