# Clinical, epidemiological, and care profile of hospitalized patients with retinoblastoma in Brazil

## TL;DR

This study examines the clinical and epidemiological characteristics of hospitalized retinoblastoma patients in Brazil, highlighting diagnostic delays and the need for improved early detection and specialized care.

## Contribution

The study provides insights into retinoblastoma patient profiles and hospital performance in Brazil, emphasizing prehospital delays and regional disparities.

## Key findings

- Most patients were under 4 years old, male, and from the Southeast region of Brazil.
- High-volume hospitals had shorter diagnosis delays and longer survival times compared to low- and medium-volume hospitals.
- Over 80% of patients were from the public health system, and 88% had unilateral retinoblastoma.

## Abstract

To describe the epidemiological and clinical profile of hospitalized patients with
retinoblastoma in Brazil.

Using data from the Hospital Cancer Registry of the Instituto Nacional de
Câncer, patients with the morphological codes of retinoblastoma who
were diagnosed between 2000 to 2018, aged 0–19 years, and followed up in registered
hospitals (analytical cases) were selected. The relative and absolute frequencies of
demographic, clinical, diagnostic, therapeutic, and outcome variables were described.
Hospital performance indicators were calculated and compared between hospitals qualified
and not qualified to treat pediatric oncology cases and between hospitals with different
case volumes (<20, 20-75, >75 cases).

Of the 2,269 identified analytical cases from 86 institutions, 48% were from the
Southeast, 54% were male, and 66% were aged <4 years. The proportion of missing data
(NA) was too high for several variables. Approximately 84% of the patients were from the
public health system, 40% had a positive family history, and 88% had unilateral
involvement. The first treatment included surgery in 58.3% of the patients (NA=2),
Approximately 36.6% of these patients achieved complete remission, 10.8% achieved
partial remission, and 12.7% died (NA=59%). Hospital performance indicators were within
the target in >90% of the patients. The median time between the first appointment and
diagnosis (6 days, interquartile range [IQR] 1–14) was significantly lower and the
median time to death was longer (343 days, IQR, 212-539) in high-volume hospitals
(>75 cases) than in medium- and low-volume hospitals.

Despite the high proportion of missing data, we found that the delay in diagnosis is
due to prehospital factors. Additionally, there is a need for educational programs for
healthcare professionals and families that emphasize early identification and referral
to specialized centers. Future studies should focus on the impact of Hospital Cancer
Registry data completeness on outcomes, causes of delay in diagnosis, regional
inequalities, and barriers to accessing specialized services.