Compliance in retinoblastoma

Abstract

This is one of the largest studies in relation to sociodemographic factors and clinical spectrum, and the only study from Asia evaluating compliance with recommended therapy in retinoblastoma. In order to improve ocular and patient salvage rates in Asian countries, exact causes for poor compliance in retinoblastoma need to be closely examined through a prospective study.

Strategies to manage retinoblastoma in developing countries

“…Delayed diagnosis accounts for the increased prevalence of advanced retinoblastoma in developing countries and explains why retinoblastoma is diagnosed at a later age in these countries [9,10,26,27]. Brazilian investigators were the first to report the importance of lag time (i.e., the interval between the onset of symptoms and diagnosis) in determining outcome [9].…”

“…This pattern of parents not accepting the enucleation of the affected eye or defaulting from follow-up after a conservative intent is similar in many areas of the developing world. Rates from 18% to 50% have been reported by groups in from Asia, Africa, and Central America [11,13,21,26,29,33]. Decisions against enucleating the second affected eye after conservative treatment fails account for a survival rate of less than 60% in patients with bilateral retinoblastoma in Taiwan, a relatively affluent country having a national healthcare program that offers subsidized care [34].…”

“…Estimated World Incidence [6], Mortality [7], and Prevalence of Metastatic Disease [7] at Diagnosis and Families Opting Out of Treatment [7] that initial enucleation was not accepted in about 7% of the cases, but children undergoing conservative treatment had more problems with adherence to treatment, since about two-thirds of the eyes that were treated with a conservatively did not receive effective treatment or completed follow up [26]. In that study, there were no significant differences in compliance according to gender, religion or place of residency [26]. The factors influencing lack of treatment adherence may vary in different areas and the role of the extended family appears to be critical in some African countries [35,36].…”

“…Problems in adherence to treatment of children receiving chemoreduction were also reported. Only onethird of the patients completed effective treatment in one series [26] and a variable proportion, reaching 20% in one study [59], of children died of extraocular dissemination after their parents decided against enucleation after failure of conservative therapy [56,59,63,64]. Children treated with chemoreduction and who have no local therapy will almost invariably experience relapse [65], so if they become lost to follow-up or if their families do not choose enucleation when local therapy fails or is not given,these patients may suffer fatal extraocular dissemination [11].…”

“…The precise numbers of this equation vary in different settings, but unfortunately they are difficult to estimate with the information available because little data of secondary malignancies have been published [66], and tumor registries in developing countries are incomplete or nonexistent. Since the occurrence of radiation-induced secondary malignancies may be lower in children older than 1 year at the time of irradiation [67], children from developing countries might have a lower risk of radiation-induced secondary malignancy since they are diagnosed usually after the first birthday [26,63]. However, the access to high quality radiotherapy in developing countries is also limited [68], so the availability of treatment resources also influences the decision making in this setting.…”