Purpose
Brain tumors are the leading cause of death from childhood cancer. Improvements in detection, therapy, and surveillance have improved survival. Permanent sequelae of the tumor and its treatment may cause severe impairment and reduced quality of life (QOL). We reviewed the literature and initiated a quality improvement (QI) project evaluating visual impairment and its effects on QOL.
Methods
Patients ≤18 yo & ≥6 months post primary brain tumor (PBT) diagnosis, excluding primary intrinsic anterior visual pathway tumors, underwent neuro-ophthalmologic examination. In the QI project, patients and parents completed Health-related QOL (HR-QOL) [PedsQL Brain Tumor Module] and Vision-related QOL (VR-QOL) questionnaires [children <8yo: Children’s Visual Function Questionnaire; 8-18yo: EYE-Q]. Demographic data, driving status, schooling, and use of low-vision aids were recorded. Patients were classified as normal, visually impaired, or legally blind. We reviewed recent studies (2000-2014) of ophthalmologic sequelae, long-term disability, and QOL in pediatric PBT patients.
Results
32 PBT patients were evaluated (24 supra-, 8 infra-tentorial). 3/32 (9.3%) were legally blind; 15/32(46.9%) had visual impairment; 15/31(48.4%) had significant visual field defects, 16/32(50%) had strabismus, cranial nerve palsies, or nystagmus. Patients' median HR-QOL was 68.6 (range 28.1-95.8). Parents’ HR-QOL scores for their children were 0.82x (SE±0.25) their children's score(R2=0.59;p<0.001). VR-QOL median score was 3.35 (range 0.38-4.0). HR-QOL scores were not significantly correlated with visual function. EYE-Q was -3.0 points lower (SE±0.64;p<0.001) in those with severe visual impairment vs. those with none. Twelve studies met our criteria for review. Prevalence of visual dysfunction ranged from 8-79%. 3/12 studies reported frequency of bilateral blindness (3-16%). HR-QOL was significantly lower in PBT patients compared to normal controls in most studies. VR-QOL was not addressed in recent pediatric PBT studies.
Conclusions
Children with PBT and their parents have similar perceptions of HR-QOL. VR-QOL loss was associated with visual dysfunction in PBT patients in our center’s experience. "Cured" pediatric PBT patients may have severely affected vision, HR-QOL, and VR-QOL. Systematic neuro-ophthalmologic examinations of pediatric PBT patients may improve long-term visual outcomes and QOL through earlier intervention.