[Health Related Quality of Life in retinoblastoma patients]

Retinoblastoma (Rb) is the most common intraocular cancer in children and, along with its treatment, can negatively impact the Quality of Life (QoL). Few studies have explored this subject in these patients; none in Latin America.

To evaluate the general, physical, emotional, social, and school quality of life of patients treated for Rb and to analyze which patient, disease, or treatment factors are associated with worse outcomes.

Descriptive, cross-sectional, analytical study in 59 cases aged between 2 and 18 years treated between 2007-2021, in remission and at least one year of follow-up. The PedsQL 4.0™ scale, which measures QoL in the pediatric population in four dimensions, was applied to children and one caregiver. Non-parametric (Kruskal-Wallis and median) and parametric (Chi-square) tests were used to study differences. The study was approved by the Institutional Ethics Committee.

QoL reported by patients was medium for the general and school dimensions (73.8 and 70, respectively), high for physical and social health (83.1 and 80), and low for the emotional dimension (65). The quality of life reported by parents was high for general and physical and social health (78, 87.5, and 80, respectively), and medium for emotional and school dimensions (70 and 75). No significant differences were found regarding sex, disease stage at diagnosis, Rb laterality, or treatment received. Age at diagnosis > 18 months was associated with worse QoL in general and in all dimensions and was significant in parents.

Children treated for Rb had their QoL affected, particularly in emotional and school dimensions.