Cutting Edge Glaucoma - Issue 2

20 • CUTTING EDGE - GLAUCOMA Quality of Life of Children Afflicted with Glaucoma and that of their Caregivers Good quality of life (QoL) is a key outcome for children afflicted with glaucoma, an outcome parents want most for their children. Patient-based assessment of the impact of disease is now widely advocated [73, 74]. However, little is known about the QoL of children with congenital glaucoma in the developing world. It is necessary to assess the health-related QoL (HRQoL) of the children with congenital glaucoma who undergo surgery and to compare it with an age-matched control group. Children with PCG undergo surgery at a very early age and undertake multiple, frequent hospital visits over a long period of time, during which there can be uncertainty about visual prognosis. In advanced cases, children with glaucoma require several surgical interventions to achieve satisfactory IOP control, and treatment of such cases is often challenging. In a cross-sec- tional study at LV Prasad Eye Institute, Hyderabad, India, we assessed the HRQoL of 121 children with PCG (mean age-11.8 years) who underwent glaucoma surgery (mean time since surgery-10 months–2 years) by a single surgeon and 204 age-matched healthy controls. Despite undergoing successful glaucoma surgery, children with PCG reported significantly compromised HRQoL as compared with their typically developing peers (unpublished data). Younger children with PCG and those belonging to families from lower socioeconomic status were more likely to experience decreased HRQoL. Ophthalmologists need to be alert to the impact of glaucoma on the QoL of children and efforts must be made to improve it. Caregivers of children with PCG have significant emotional and psychological burdens; moderate to severe depression may be present in a third of such caregivers [75]. Recently Gothwal et al . designed, developed, and validated the first novel Caregivers Congenital Glaucoma Quality of Life (carCGQoL) questionnaire for use in helping caregivers of children with PCG. It is psychometrically robust, short (20 items), and relatively easy to complete [76]. It has excellent psychometric properties: unidimensionality, good reliability, good targeting, and well functional rating scale. In a cohort, which included 111 consecutive caregivers, Gothwal et al . demonstrated a large improvement in the caregivers QoL scores from preoperative (baseline) to the 6–8 week postoperative period [77]. In a subsequent study, the same authors demonstrated that this significant improvement in the caregivers QoL was maintained up to 2 years following surgery (unpublished data). Hence, successful PCG surgery can improve not only the child’s clini- cal condition but also the caregiver’s quality of life. Conclusion The prevalence and severity of childhood glaucoma are higher in developing countries and a sig- nificant number of these children are blind. Delayed diagnosis from lack of awareness (among other factors leading to late presentation), more severe disease, and poor follow-up are prob- ably the reasons for this increased blindness rate. Surgery is the primary treatment option in managing childhood glaucomas. However, due to the severity of disease at presentation, repeat