Lag Time between Onset of First Symptom and Treatment of Retinoblastoma: An International Collaborative Study of 692 Patients from 10 Countries

Abstract

Background: The relationship between lag time and outcomes in retinoblastoma (RB) is unclear. In this study, we aimed to study the effect of lag time between onset of symptoms and diagnosis of retinoblastoma (RB) in countries based on their national-income and analyse its effect on the outcomes. Methods: We performed a prospective study of 692 patients from 11 RB centres in 10 countries from 1 January 2019 to 31 December 2019. Results: The following factors were significantly different among different countries based on national-income level: age at diagnosis of RB (p = 0.001), distance from home to nearest primary healthcare centre (p = 0.03) and mean lag time between detection of first symptom to visit to RB treatment centre (p = 0.0007). After adjusting for country income, increased lag time between onset of symptoms and diagnosis of RB was associated with higher chances of an advanced tumour at presentation (p < 0.001), higher chances of high-risk histopathology features (p = 0.003), regional lymph node metastasis (p < 0.001), systemic metastasis (p < 0.001) and death (p < 0.001). Conclusions: There is a significant difference in the lag time between onset of signs and symptoms and referral to an RB treatment centre among countries based on national income resulting in significant differences in the presenting features and clinical outcomes.

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

“…Details for the methodology for collection of data in this prospective observational study have been described in detail in Kaliki, et al 28 Briefly, clinical and demographic information was gathered prospectively for all patients with newly diagnosed RB who presented to 11 international centers within 10 countries (Bangladesh, China, Ethiopia, France, India, Pakistan, Peru, Russia, UK, USA) during the calendar year 2019. Centers were selected from all continents and income ranges and they represent centers where prospective data could be collected over one year.…”

“…Similarly, Kaliki, et al found country income level significantly impacts lag time for diagnosis of RB in this data set. 28 Financial barriers have long remained astute in their role in impacting health outcomes. Nuances of these results should be further explored, particularly in relation to family income, costs of treatments, and subsidies provided by the government or private entities for care provision and treatment.…”

The Effects of Breastfeeding on Retinoblastoma Development: Results from an International Multicenter Retinoblastoma Survey

“…This study is a secondary database analysis completed on a deidentified dataset from patients who participated in a multinational collaborative study, the Lag Time for RB study [13]. The Lag Time study was a collaboration of 11 RB treatment centers and was approved by the London School of Hygiene & Tropical Medicine Institutional Review Board (reference no.…”

“…Inclusion criteria for our subgroup analysis were patients who participated in the Lag Time for RB study [13] who completed the neonatal portion of the questionnaire. Parents were asked to indicate breastfeeding status as "yes", "milk substitute", "both", or "other".…”

“…Given these inconclusive results, we aim to further investigate the role breastfeeding plays in the severity of nonhereditary RB development. Specifically, we will assess the relationship of breastfeeding to (1) patient age at diagnosis, (2) ocular prognosis, and (3) extraocular involvement using a large published multinational database [13]. We limited our investigation to nonhereditary cases of RB, as infant nutrition is less likely to influence the development of hereditary RB given that the first mutation occurs during embryogenesis before the infant breastfeeds.…”