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Vijaya K Gothwal, Seelam Bharani, Anil K Mandal; Congenital glaucoma surgery improves caregivers’ quality of life. Invest. Ophthalmol. Vis. Sci. 2014;55(13):171.
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Outcome following primary congenital glaucoma (PCG) surgery has traditionally been measured in terms of control of intraocular pressure (IOP). While glaucoma specialists consider PCG surgery to be routine for children, the impact on the family of the diagnosis, surgery and the care process, thereof, is not fully understood. Therefore, the primary aim of this prospective interventional study was to evaluate the caregivers’ quality of life (QoL) before and after glaucoma surgery, and secondarily to explore whether demographic and clinical variables affect caregivers’ QoL.
Caregivers of PCG children who were scheduled for surgery at a tertiary centre were administered the caregiver CGlauQoL questionnaire, CarCGlauQoL (developed by us for this study) and patient health questionnaire-9, PHQ-9 (to measure depression) before and after surgery (6 weeks). All the children underwent combined trabeculotomy-trabeculectomy. There were 2 cohorts: a preoperative cohort used for questionnaire development (n=79) and an outcomes cohort (n=63). Rasch analysis was used to validate and refine the questionnaires following which the 25-item CarCGlauQoL and 8-item PHQ questionnaires emerged. Rasch-scaled scores from stacked data for each of the questionnaires were used to compare the caregivers’ QoL and depression before and after surgery. Cohen d values were used to estimate magnitude of change.
The mean (SD) age of outcomes cohort (n=63) was 24.6 (4.1) years (range, 19 to 41 years). The mean (SD) age of children was 6.1 (9.6) months and 52% were male. Most children (75%) had bilateral affliction and had new born variant of PCG (71%). Surgical success (IOP <21 mmHg) was achieved in 93.6% patients. Postoperatively, there was a statistically significant improvement for both CarCGlauQoL and PHQ-8 scores (P<0.001). The magnitude of postsurgical improvement in the caregivers’ QoL and depression was relatively large (Cohen d = 0.76 and 0.80 respectively). None of the variables impacted the scores.
To our knowledge this is the first study to demonstrate that successful PCG surgery not only helps reduce IOP, but also has a significant positive impact on caregivers’ QoL regardless of demographic and clinical variables. Furthermore, the 25-item CarCGlauQoL questionnaire provides a linear interval measurement of caregivers’ QoL and shows promise as a patient-reported outcome measure in the treatment plan of children with PCG.
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