Determinants of retinoblastoma treatment delay in a Sub-Saharan African country

Purpose

To examine the determinants of retinoblastoma treatment delay in children diagnosed with retinoblastoma in Ghana.

Methods

: The study is a retrospective cross-sectional review of hospital records of children with retinoblastoma from treatment centers in Ghana from 2014 to 2019. Data were collected by trained ophthalmology residents and nurses and entered into a REDCap (Research Electronic Data Capture) database. Frequencies and proportions were used in describing categorical variables. Independent samples t‑test and the Mann-Whitney U test were used to compare equality of means and median values. P-values less than 0.05 were considered statistically significant.

Results

Of the 234 children, 224 (95.7%) were referred cases and the remaining 10 (4.3%) were walk-ins. The average distance traveled by the children from home to retinoblastoma treatment center was 118.9 ± 128.4 km. The mean parental lag time was 7.6 ± 4.6 months. Longer parental lag time was associated with older age at presentation and unilateral disease (p < 0.05). The mean referral lag time was 0.6 ± 0.5 months. Longer referral lag time was associated with patients who abandoned treatment or died compared with those who survived at last follow-up (p = 0.036). A total of 125 (55.8%) cases abandoned treatment after being referred and seen at a treatment center.

Conclusion

Analysis of the pathway from the observance of the first sign of retinoblastoma to presentation to a health facility reveals a need to reduce both parental and referral lag times in order to improve retinoblastoma outcomes. Future studies may help to unravel factors contributing to long parental lag time, referral lag time and abandonment of treatment in Ghana.