ABSTRACT
ABSTRACT
Purpose:
To describe the epidemiological and clinical profile of hospitalized
patients with
retinoblastoma in
Brazil.
Methods:
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).
Results:
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.
Conclusions:
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.