Purpose
To evaluate the burden of care associated with managing childhood glaucoma upon diagnosis and during first 4 years of care.
Methods
Records of children with primary congenital glaucoma (PCG) or secondary glaucomas (secondary to systemic conditions such as neurofibromatosis, Sturge-Weber, other; ocular conditions such as uveitis or post childhood cataract) who presented over a 15 year period to the New Jersey Medical School were reviewed. Data on interventions undergone in each eye at every year throughout the first four years of management after initial diagnosis was collected. This included (1) total number of exams under anesthesia (EUA) (2) glaucoma procedures (P), including other procedures undergone secondary to the patient’s glaucoma such as cataract extractions, pars plana vitrectomies, or penetrating keratoplasties and (3) all office and emergency department visits (V) related to the patient’s glaucoma.
Results
A total of 60 patients (101 eyes) diagnosed with and managed for childhood glaucoma were included. Of those, a total of 23 patients were identified that included data up to four years after initial diagnosis. These consisted of 10 patients with PCG (a total of 19 eyes), and 13 patients with secondary glaucoma (a total of 20 eyes). The mean age at presentation was 41.1 months (ranging from birth to 216 months) and 35.1 months (ranging from birth to 240 months) in the PCG and secondary glaucoma groups respectively. Combined, the mean number of total interventions (EUAs, V, and P) per patient (39 eyes of 23 patients) at each of the four years since diagnosis was 8.9, 5.7, 4.6, and 4.8. The mean number of interventions per patient in each of the two groups each year is included in Table 1.
Conclusions
Childhood glaucomas pose significant burden of care on families and care givers at diagnosis and during the first 4 years of treatment. This burden was highest the first year after diagnosis, but persisted during the 4 years included in this study.
Keywords: 460 clinical (human) or epidemiologic studies: health care delivery/economics/manpower •
462 clinical (human) or epidemiologic studies: outcomes/complications •
556 infant vision