Parental lag time is primary reason for delayed diagnosis and treatment of retinoblastoma

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A study performed by Indian researchers found that children with retinoblastoma were diagnosed after a lag time of under 3 months, which in turn delayed treatment. They cited the need for training and awareness initiatives to improve management of these patients,¹ according to the first author Sima Das, MD. She is from the Oculoplasty and Ocular Oncology Services, Dr Shroff’s Charity Eye Hospital, New Delhi, India.

Retinoblastoma is the most common intraocular malignant cancer in children, and survival rates depend on the geographic location and the economic status of the country. Das and colleagues cited a study that reported that the 3-year survival rate in low- and middle-income countries was 50% in contrast to almost 100% survival in patients in high-income countries.²

The survival rates reported from high-income countries range were 88% in the United Kingdom and 93% in the US.^3,4 However, in countries like India, Nepal, Africa, and South American countries, the children with retinoblastoma present much later when the disease is more advanced and their prognoses are significantly inferior. For example, orbital retinoblastoma has been reported to be 18% in Mexico, 36% in Taiwan, and 40% in Nepal, and ranges from 9% to 45% in India, Das and colleagues related.^5-12

“Delay in diagnosis of retinoblastoma has been associated with lower chances of globe salvage and higher mortality.^13,14 Studies from South America have noted prolonged time to diagnosis to be more associated with extraocular disease at presentation.^15,16 Reduced lag time to diagnosis has been associated with less advanced RB, as found in a Swiss study.¹⁷ A large proportion of the delay in diagnosis has been attributed to delayed referral to specialists,¹⁸” they emphasized.

Ocular salvage and preservation of vision are essentially dependent on early diagnosis, and several studies have been conducted to identify the factors leading to delayed diagnosis at presentation.^19,20

It currently remains unclear the degree to which prolonged lag time is attributable to delayed presentation by the family (parental lag time) as opposed to delays in the healthcare system (system lag time). This prospective, multicentric study of newly diagnosed retinoblastoma was undertaken to investigate lag time and its correlation with various variables.

Effects of parental lag time

The study extended over 3 years and included 1,120 patients from 20 centers.

The investigators reported, “Extraocular or metastatic disease was present in 25.2% of patients at diagnosis. The mean lag time from symptom onset to treatment initiation was 4.2 months (range, 0.5–61.6 months). Parental, diagnosis, and treatment lag times contributed to 44%, 26%, and 31% of the total lag time, respectively.

Parental lag time was the chief culprit in the delayed diagnosis of retinoblastoma and treatment.“Increased lag time was significantly correlated with the stage at presentation (P < 0.05), lower socio-economic status (P = 0.006), increased distance from treating center (P = 0.001), younger maternal age at pregnancy (P < 0.05), family history of cancer (P = 0.031), and first consultation with a non-specialist (P = 0.001), and was negatively correlated with improved maternal education.

Das and colleagues concluded, “Parental lag time is the major contributor to the cascading delay in retinoblastoma diagnosis and treatment initiation. Efforts for earlier diagnosis, therefore, need to be directed towards community awareness and routine screening during contact with healthcare professionals, such as at immunization. The first consultation with a nonspecialist other than an ophthalmologist or pediatrician was associated with delayed diagnosis. Hence, training and awareness initiatives should be directed towards all cadres of healthcare workers and not be limited to specialists.”

References

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