Young adults with vision impairment in India: Loneliness and social networks.

PURPOSE: To examine the prevalence of loneliness and associated factors in young adults with vision impairment (VI), including quality of life (QoL) in India. METHODS: Two hundred and three VI young adults (18-35 years) and 219 age-matched non-VI (controls) adults completed the loneliness scale, WHOQOL-BREF, Social Network Index (SNI) (network diversity, people in network size and number of embedded network subscales) and questions regarding sociodemographic characteristics and independent mobility. Rasch analysis was used to validate the questionnaires and interval-level scores were generated. Generalised linear models were used to estimate independent associations of sociodemographic factors, VI characteristics, social networks and QoL with loneliness. RESULTS: The prevalence of moderate and severe loneliness in the VI group was 10% (95% CI: 6.5, 15.4) and 4.4% (95% CI: 2.0, 8.2), respectively, and higher than that of controls. The VI group had a worse loneliness score than controls (-1.66 ± 2.25 vs. -2.13 ± 1.85 logits; p = 0.03). Those with ≤12 years and >12 years of education had loneliness scores of -1.58 ± 2.45 and -1.82 ± 1.99 logits, respectively (p = 0.01). Compared with controls, the VI group reported fewer extended family members, neighbours and friends leading to significantly smaller networks and network diversity (all p < 0.001). Loneliness scores demonstrated a significant correlation with only two SNI subscales for both groups: people in network size (r = -0.28 for VI; r = -0.30 for non-VI; p < 0.001 for both) and number of embedded networks (r = -0.22 for VI; r = -0.21 for non-VI; p = 0.002 for both). Both education (ß = 0.45; p = 0.04) and QoL (ß = -0.27, p = 0.02) were predictors of loneliness. CONCLUSIONS: Loneliness was commonly experienced by young VI adults and was higher among those with lower levels of education. Loneliness decreased with the presence of a larger number of people in network, suggesting that interventions to increase social activity and participation may be valuable in young VI adults.

Social media use and vision impairment in adults between the ages of 18 and 35 years in India.

SIGNIFICANCE: Social media is used by >4.48 billion people worldwide. Despite its popularity, vision-impaired individuals struggle to use social media given visual inaccessibility of content and lack of access to Internet/Wireless-Fidelity-enabled devices. Our study explores visually impaired adult's use of social media in comparison to a control group. PURPOSE: This study aimed to report the demographic profile and patterns of social media use among adults with vision impairment (VI) aged 18 to 35 years and compare it with an age-matched normally sighted group in India. In addition, we explored barriers to use of social media among adults with VI. METHODS: Vision-impaired and normally sighted adults (controls) aged 18 to 35 years at L V Prasad Eye Institute, Hyderabad, India, answered a questionnaire about social media use (e.g., platform used). RESULTS: Four hundred twenty-two individuals (201 VI, 221 controls) participated. Normally sighted adults (98%) used social media more than the VI group (81%; p<0.001). Vision-impaired users were predominantly male (85%) and unemployed (57%; p<0.00001 for both). There was no significant difference in educational level between groups (p=0.17). Smartphones were the most popular device used (VI, 161 [99%]; control, 206 [95%]), with tablet PC/iPad being the least popular (VI, 5 [3%]; control, 12 [6%]). Adults with VI and controls commonly used WhatsApp as communication platforms, and Facebook and Twitter as networking platforms. Approximately one-third of individuals across both social media user groups reported barriers to use (VI, 48 [30%]; control, 74 [34%]; p<0.001). Vision-impaired individuals cited accessibility issues of having to rely on audio over vision to navigate social media, whereas controls reported having to share a phone. CONCLUSIONS: The proportion of social media usage among VI adults is high (81%) and is substantially higher than the 33% reported in the general Indian population. Vision-impaired adults who used social media were male with moderate VI and were less likely to be employed compared with controls.

Measurement of visual functioning following first and second eye cataract surgery using Vision-Related Activity Limitation Item Bank.

PURPOSE: This study aims to compare visual functioning (VF) after first or second eye cataract surgery using the vision-related activity limitation (VRAL) item bank. METHODS: This prospective, interventional study included 787 patients (mean age, 58.2 years) with cataract undergoing cataract surgery (first eye surgery with/out ocular comorbidity, second eye surgery with/out ocular comorbidity) at a tertiary eye care center, South India, who were administered the item bank pre- and at 6 weeks postoperatively to assess change in VF. Rasch analysis was used to estimate VF at both time points, and responsiveness to cataract surgery was calculated as effect size (ES) which was interpreted as small (≤ 0.2), moderate (0.3-0.7), and large (≥ 0.8). RESULTS: Mean best-corrected logMAR VA in surgical eye improved significantly postoperatively compared to preoperative VA (0.20 ± 0.40 vs. 1.19 ± 0.96; P < 0.0001) across all groups. Patients reported significant and large improvements in VF postoperatively across all groups: largest ES for first eye surgery without comorbidity (1.87 [95% CI, 1.61, 2.13]) and smallest for second eye without ocular comorbidity (1.55 [95% CI, 1.22, 1.88]). Compared to patients undergoing second eye surgery, first eye surgery patients reported significantly lower VF preoperatively (-0.72 ± 2.39 vs. 0.17 ± 2.34 logits; P < 0.0001), and a larger change in VF postoperatively (3.71 ± 2.33 logits vs. 4.27 ± 2.83 vs.; P = 0.004). CONCLUSIONS: Cataract surgery resulted in large and significant improvements in VF, regardless of ocular comorbidity and first or second eye surgery. The VRAL item bank is a useful tool to measure responsiveness to cataract surgery.

Long-term Outcomes in Patients Undergoing Surgery for Primary Congenital Glaucoma between 1991 and 2000: A Single-Center Database Study.

PURPOSE: To estimate the long-term surgical and visual outcomes in patients with primary congenital glaucoma (PCG) who completed at least 20 years of follow-up. DESIGN: Retrospective study. PARTICIPANTS: Two hundred twenty eyes of 121 patients undergoing surgery for PCG between January 1991 and December 2000 and who returned for a follow-up visit from January 2021 through January 2022. METHODS: Retrospective review of medical records of patients who underwent primary combined trabeculotomy-trabeculectomy (CTT) without mitomycin C as an initial procedure. Success was defined as complete when intraocular pressure (IOP) was ≥ 6 mmHg and ≤ 21 mmHg without glaucoma medication and as qualified when up to 2 glaucoma medications were required. Failure was defined as uncontrolled IOP with more than 2 glaucoma medications, need for a second IOP-lowering procedure, chronic hypotony (IOP < 6 mmHg on 2 consecutive visits), or any sight-threatening complication. A mixed-effects model using maximum likelihood estimation was used in estimation of eye-based variables and to make comparisons between different visits. Kaplan-Meier survival analysis was used to estimate the probabilities of surgical and functional successes. Cox proportional hazards regression using sandwich clustered estimation was used to evaluate risk factors for failure and poor visual outcome. MAIN OUTCOME MEASURES: Primary outcome measure was the proportion of patients who demonstrated complete success over the 20-year follow-up. Secondary outcome measures included rate of surgical failure and need for reoperation for glaucoma, visual acuity, refractive errors, risk factors for poor outcome, and complications. RESULTS: Kaplan-Meier survival analysis revealed 1-year, 10-year, and 20-year complete success rates of 90.7%, 78.9%, and 44.5%, respectively. In univariate analysis, surgical failure was higher among patients with any additional non-glaucoma intraocular surgery. None of the clinical parameters were associated significantly with failure in multivariable analysis. Overall, the proportion of eyes with good, fair, and poor visual outcomes was 33.2%, 16.4%, and 50.4%, respectively. Myopia was seen in 68.9% eyes. Twenty-eight eyes of those who underwent primary CTT (14.4%) required second surgery for IOP control. No significant intraoperative complications occurred. Six eyes required enucleation because of painful blind eye. CONCLUSIONS: In this large cohort of patients with PCG, CTT is a useful procedure. It provides good IOP control and moderate visual recovery that remained over a 20-year follow-up after surgery. FINANCIAL DISCLOSURE(S): The author(s) have no proprietary or commercial interest in any materials discussed in this article.

Corneal Endothelial Features in Patients Operated for Primary Congenital Glaucoma.

PURPOSE: To compare the corneal endothelial cell morphology using specular microscopy imaging between primary congenital glaucoma (PCG) and age-matched healthy controls, and to determine if the endothelial cell parameters vary among different subtypes of PCG. DESIGN: Retrospective case-control study. PARTICIPANTS: One hundred forty-five eyes of 145 patients operated for PCG between 1991 and 2018 and who returned for a follow-up visit between June 2021 and May 2022. Three hundred and nineteen age-matched healthy individuals constituted the control group. METHODS: Corneal endothelial cell layer analysis was performed with EM-3000 (Tomey) noncontact specular microscope. Patients were categorized according to the clinical subtypes of PCG (neonatal, infantile, and late-onset) based on the Childhood Glaucoma Research Network classification. MAIN OUTCOME MEASURES: Specular microscopic parameters, including endothelial cell density (ECD), average cell size, coefficient of variation (CV), and maximum and minimum cell size, were compared with that of the control group. RESULTS: Mean ± standard deviation (SD) age of patients at endothelial imaging was 13.5 ± 6.54 years, and there was a male preponderance (n = 88, 61%). The majority of the patients had infantile-onset PCG (n = 67, 46%). Eyes with PCG demonstrated a significantly lower ECD compared with controls (2158.7 ± 636.5 vs. 2840.9 ± 232.5 cells/mm2; P < 0.0001). Other endothelial cell parameters were also significantly worse in PCG compared with controls. The mean ± SD ECD was 2344.3 ± 544.3, 2131.9 ± 626.4, and 2054.2 ± 714.0 cells/mm2 in neonatal onset, infantile, and late-onset PCG groups, respectively. Although the ECD was lowest in the late-onset PCG group, there was no significant difference in the ECD between the 3 subgroups. Except for CV, all the endothelial cell parameters were significantly worse in eyes with Haab striae than in eyes without. CONCLUSIONS: Patients with PCG have significantly lower ECD compared with healthy controls. Furthermore, other endothelial cell parameters were also significantly worse in the PCG group. These changes in the corneal endothelium in patients with PCG should be considered in long-term medical and surgical management. FINANCIAL DISCLOSURE(S): The author(s) have no proprietary or commercial interest in any materials discussed in this article.

Glaucoma management in congenital ectropion uveae: Surgical outcomes from a large tertiary referral center in South India.

PURPOSE: To evaluate the long-term outcomes of glaucoma management in patients with congenital ectropion uveae (CEU) over a period of three decades at a single large referral tertiary eye care center. METHODS: Retrospective chart review of all patients with CEU treated surgically from 1990 to 2019 was performed. Primary combined trabeculotomy-trabeculectomy (CTT), trabeculectomy with and without mitomycin-C (MMC) (0.2 mg/mL for 1 min) and transscleral cyclophotocoagulation (TSCPC) were performed. Intraocular pressure (IOP) ≥6 and ≤16 mmHg without medications was considered as complete success and IOP≤ 16 mmHg with the use of upto 2 medications as qualified success. RESULTS: A total of 26 eyes of 21 patients were identified with a median age of 7 years (range, 6 days to 19 years) at the time of glaucoma surgery. Median follow-up was 51.1 months (range, 7-244.6 months). Primary CTT was performed in 17 eyes (65%), trabeculectomy in 5 eyes (19%) with application of MMC in 2 eyes, and 3 eyes (12%) underwent TSCPC. One painful blind eye (4%) underwent evisceration. Mean IOP reduced from 30.8 ± 7.6 mmHg on a mean of 1.3 ± 0.8 glaucoma medications preoperatively to a mean IOP of 15.2 ± 5.9 mmHg (P < 0.0001) on a mean of 0.2 ± 0.5 medications postoperatively at final follow-up (P = 0.0009). Complete success was achieved in 20 eyes, and qualified success in 2 eyes. CONCLUSIONS: CTT is a safe and efficacious primary procedure for management of early-onset glaucoma in CEU. Trabeculectomy with or without adjuvant MMC is a viable second line of treatment in late-onset glaucoma with CEU for IOP control.

What are the reasons for abandonment of low vision devices prescribed in a large tertiary eye care centre?

PURPOSE: To investigate abandonment rates of near-vision low vision devices (LVDs) and factors that influence abandonment among patients attending a tertiary low vision rehabilitation centre in South India. METHODS: Two hundred and eighty-six adults with low vision completed the modified device abandonment survey 1 year following device prescription. The survey included six questions: possession of device, timing of last use, reasons for abandonment, tasks for which the device was used, payment type and change in quality of life (QoL) from device use. The primary outcome measure was abandonment. Multivariate logistic regression analysis was used to investigate factors for abandonment. RESULTS: Three hundred and twelve near-vision devices were prescribed (mean, 1.09 device per patient.) Stand magnifiers (35%) followed by hand-held magnifiers (24%) were most frequently prescribed. Mean logMAR visual acuity (Snellen) in the better-seeing eye was 0.80 (6/38). Of the prescribed near-vision devices, 22% (95% CI, 17 to 27) were abandoned. Patients who abandoned the device were significantly older than those who did not (49.3 ± 17.2 vs. 43.5 ± 18.1 years; p = 0.03). In multivariable analysis, patients reporting no change in their QoL from device use had higher odds of abandoning the device (OR: 63.97; 95% CI, 23.77 to 172.12). Device-related (31%) and psychological (30%) factors were the most frequent reasons for abandonment. Among device-related issues, the most frequent reason was that patients felt the device was too complex to use (50%) followed by being too cumbersome to use (25%). CONCLUSION: The abandonment rate for near-vision LVDs in South India was comparable with that reported in high-income countries. Patients reporting no change in their QoL had a higher likelihood of abandoning the device compared with those who reported some change. Device-related and psychological factors were the most frequent reasons for abandonment. These results can be used to develop strategies to improve compliance with use of devices.

Approach to primary congenital glaucoma: A perspective.

Primary congenital glaucoma (PCG) occurs worldwide and has a broad range of ocular manifestations. It poses a therapeutic challenge to the ophthalmologist. A proper diagnostic evaluation under anesthesia is advisable for all children who do not cooperate for an office examination. Medical therapy only serves as a supportive role, and surgical intervention remains the principal therapeutic modality. Angle incision surgery such as goniotomy or trabeculotomy ab externo is the preferred choice of surgery in the Caucasian population. Primary combined trabeculotomy-trabeculectomy with or without antifibrotic therapy is the preferred choice in certain regions such as India and the Middle East where the disease usually presents with severe forms of corneal edema along with megalocornea. In refractory cases, trabeculectomy with antifibrotic therapy or glaucoma drainage devices are available options in the armamentarium. Cycloablative procedures should be reserved for eyes with poor visual potential. Myopia is common among children with PCG, and appropriate optical refractive correction in the form of glasses or contact lenses should be provided. Amblyopia therapy should be instituted to ensure overall visual development in the early developmental years. Low-vision rehabilitation services should be provided to children with vision impairment. Long-term follow-up is mandatory and carers of children with PCG should be counseled and educated about this need. Regardless of the visual outcomes, clinicians should emphasize the need for education of these children during the clinic visit. The overall goal of the management should be to improve the overall quality of life of the children with PCG and their carers.

Factors affecting quality of life in keratoconus.

PURPOSE: To identify the factors affecting the quality of life (QoL) in adults with keratoconus, using the disease-specific Keratoconus Outcomes Research Questionnaire (KORQ). METHODS: In this cross-sectional study, 574 patients with keratoconus completed the 29-item KORQ (18-item activity limitations and 11-item symptoms subscales) and demographic information. Based on mean corneal curvature to grade keratoconus severity, participants were categorised into four groups: mild <48 dioptres [D]; moderate: 48 to 53 D; advanced: 54 to 55 D and severe: >55D. Rasch analysis was used to assess the psychometric properties and to score the KORQ. Multivariable regression was performed to determine the independent impact of age, sex, laterality, severity and duration of keratoconus, education, employment status and mode of treatment for keratoconus on activity limitations and symptoms. RESULTS: Mean (SD) age was 24.5 (5.1) years. 304 (53%), 160 (28%), 26 (4%) and 84 (15%) belonged to keratoconus groups 1, 2, 3 and 4, respectively. Rasch analysis demonstrated the 'activity limitations' and 'symptoms' KORQ subscales to possess good psychometric properties. Statistically significant associations were found between activity limitation score and the following measures: visual acuity (VA) in the better-seeing eye (r = -0.10, p = 0.01); VA in the worse-seeing eye (r = -0.09, p = 0.04) and ocular aberrations (r = -0.13, p = 0.008) in the worse-seeing eye. Statistically significant associations were also found between symptoms score and mean corneal curvature in the better-seeing eye (r = -0.10, p = 0.02). In regression models, female sex was associated with 21% worse symptom score than male (ß = -0.33, 95% CI, -0.09, -0.59, p = 0.01) and working people experienced clinically and statistically significantly greater trouble from symptoms compared to those not working (ß =0.44, 95% CI, 0.17, 0.70, p = 0.001). CONCLUSIONS: People with keratoconus have poorer QoL in terms of activity limitations if they have poorer VA and greater wavefront aberrations, and in terms of symptoms if they are female and employed.

Combined trabeculotomy-trabeculectomy for primary congenital glaucoma: long-term experience from a tertiary referral centre in a developing nation.

PURPOSE: To evaluate the long-term visual and surgical outcomes, and associated risk factors for poor outcomes in patients with primary congenital glaucoma (PCG). METHODS: Retrospective review of medical records of children who underwent combined trabeculotomy-trabeculectomy (CTT) without mitomycin-C as the first surgical procedure by a single surgeon between January 1990 and December 2010. Success was defined as intraocular pressure (IOP) <16 mmHg without (complete) or with (qualified) one glaucoma medication. We used the WHO criteria of vision loss to categorize the levels of vision impairment (VI). For purposes of statistical analysis, we randomly chose one eye of patients for bilateral PCG and affected eye in unilateral PCG. RESULTS: The cohort included 653 consecutive PCG patients (1128 eyes; mean age, 26 months), of whom 475 (73%) underwent simultaneous bilateral CTT. Kaplan-Meier survival analysis revealed 1-, 5-, 10-, 15-, and 19-year complete success rates of 92.6% (n = 372), 75.5% (n = 173), 55.9% (n = 72), 44.7% (n = 19), and 21.6% (n = 3), respectively. Multivariate analysis revealed independent associations between failure, preoperative corneal clarity, and prior glaucoma surgery. Mean follow-up was 41 ± 51 months (range, 6 months to 19 years; median, 1 year). Of the visual acuity (VA) data in the affected eyes obtained at last follow-up (n = 333, 51%), seventy-four patients (22%) had VA of ≥6/12. Of the remaining 259 patients, 18 (7%) had mild VI, 87 (34%) had moderate VI, 58 (22%) had severe VI, and 96 (37%) were blind. No serious complications were noted. CONCLUSIONS: Primary CTT may be safely employed to control IOP and may provide long-term benefits in PCG patients.

Outcomes of Management of Glaucoma in Phacomatosis Pigmentovascularis Over the Last Three Decades: A Single-Center Experience.

PURPOSE: To report the clinical outcomes of glaucoma management in patients with phacomatosis pigmentovascularis (PPV) treated over a period of 3 decades. DESIGN: Retrospective cohort study. PARTICIPANTS: Fifty-five eyes of 38 patients (21 unilateral and 17 bilateral) with glaucoma in PPV managed at one institution between January 1990 and December 2019 with a minimum follow-up of 1 year. METHODS: Medical records of children with glaucoma in PPV were reviewed, and demographic and clinical data were collected. Surgical interventions included primary combined trabeculotomy-trabeculectomy (CTT), trabeculectomy with mitomycin C (MMC), and transscleral cyclophotocoagulation (TSCPC). Complete success was defined as intraocular pressure (IOP) ≥ 6 and ≤ 16 mmHg without medications and qualified success as IOP ≤ 16 mmHg with the use of up to 2 medications. MAIN OUTCOME MEASURES: Intraocular pressure, best-corrected visual acuity (BCVA), corneal clarity, antiglaucoma medications at preoperative and postoperative visits (last visit), and complications. RESULTS: Median age was 4 months (range, 0.2-252 months) at the time of glaucoma surgery. Thirty-nine eyes (74%) had primary CTT, 10 eyes (19%) had trabeculectomy with MMC, and 4 eyes (7%) with advanced glaucoma had TSCPC. Two eyes (3.6%) received medical treatment. Preoperative IOP reduced from a mean of 25.7 ± 8.4 mmHg on 0.8 ± 0.6 medications to 14.6 ± 5.2 mmHg on 0.4 ± 0.5 medications (P < 0.0001) at last follow-up after surgery (77.7 ± 56.5 months). Thirty-seven eyes (67.3%) required medications preoperatively, and 22 eyes (40%) required medications at the last follow-up. Of 25 patients with available BCVA at last follow-up, 9 (36%) had ≥ 20/60; of these, 6 had > 20/40. Four of 10 eyes that underwent trabeculectomy with MMC developed retinal detachment and were managed surgically; however, all of these eyes had poor visual outcomes. There was no incidence of bleb leakage, bleb-related infection, or endophthalmitis. CONCLUSIONS: Combined trabeculotomy-trabeculectomy is safe and effective as a primary procedure for management of glaucoma in PPV. Trabeculectomy augmented with MMC as a second procedure was associated with a higher rate of complications.

Life in lockdown: impact of COVID-19 lockdown measures on the lives of visually impaired school-age children and their families in India.

PURPOSE: The COVID-19 outbreak has adversely impacted all societal domains including education. Home confinement, school closures and distance learning impacted children's, teachers' and parents' lives worldwide. In this study, we aimed to examine the impact of the COVID-19 lockdown on the lives, including education, of school-age children with vision impairment (VI) and their parents in India. METHODS: Primary and secondary school children with VI were recruited from the Institute for Vision Rehabilitation, L V Prasad Eye Institute, Hyderabad, India. A qualitative research methodology, utilising a self-constructed questionnaire with open and closed questions and stem and leaf design, was employed to explore the experiences of school closure and its impact on education and attending online classes during the COVID-19 lockdown. Textual data from responses to the questions were analysed using content analysis to identify themes pertinent to the cohort studied. RESULTS: Forty eight child-parent dyads were included. The median age of children was 10 years (range, 7-19 years) and 60% were male. Inherited retinal disorders were the major cause of VI (40%). Best spectacle corrected visual acuity (better eye) ranged from 0.30 to 2.09 logMAR (6/12 to 6/750). Six major themes were identified: (1) accessibility of technology (online learning and technology); (2) parental beliefs/concerns (harmful effects of technology, prioritisation of normally sighted children, online classes considered a distraction); (3) support (peers, parents, teachers, private tuition); (4) socialisation and physical activity; (5) socioeconomic status and (6) near vision. CONCLUSIONS: This study provides an understanding of the adverse impact of lockdown on the lives of children with VI and their parents, especially related to education in India. The study identified critical factors that affect online learning and the participation of children with VI in these sessions. Policymakers and educators should implement effective measures for supporting online classes.

Quality of Life and Life Satisfaction in Young Adults with Primary Congenital Glaucoma.

PURPOSE: Little is known about quality of life (QoL) and life satisfaction (LS) of treated primary congenital glaucoma (PCG) patients in adulthood. The purpose of this study was to assess the QoL and LS and their predictors among young adults treated for PCG during early childhood. DESIGN: Cross-sectional study. PARTICIPANTS: Eighty-two participants with PCG (mean age, 22.5 years; standard deviation [SD], 4.6); 52% were male; 94% bilateral) recruited at L V Prasad Eye Institute. METHODS: Participants were asked to complete the 26-item World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire (items related to satisfaction with general health, physical, psychological, social relations, and environmental aspects) and the 5-item Satisfaction with Life Scale (SWLS) in the clinic visit. Clinical data including visual acuity (VA) and visual fields (VFs) were collated from medical records. Rasch analysis was used to optimize the psychometric properties, with higher scores indicating a higher degree of QoL and LS, for both the questionnaires. Linear regression models were used to examine associations between overall QoL and LS (in separate models), and sociodemographic and clinical variables. MAIN OUTCOME MEASURES: The QoL and LS were measured using Rasch-transformed scores from the WHOQOL-BREF questionnaire and SWLS, respectively. RESULTS: Response rate was 93%. The overall mean (SD) Rasch-scaled scores for QoL were 0.93 (1.11) and 0.87 (1.32) for environment domain and 0.41 (1.56) logits for LS. Better QoL was significantly related to rural residence and higher education in both univariable and multivariable analyses and explained 13% variance. Higher LS was significantly related to marital status, unilateral affliction, and higher education in univariable analyses. However, multivariable regression analysis showed that only marital status was independently associated with higher LS and explained 8.8% of variance. Clinical and treatment variables (VF, surgical interventions, medications) were not independent predictors of QoL/LS. CONCLUSIONS: Our results suggest that QoL and LS of treated patients with PCG during adult life are generally good and appear to be driven by factors other than clinical indices. Educational achievement appears to be linked to better QoL and LS, and clinicians should emphasize the importance and need for education in the continued care of these patients.

Cross-Diagnostic Validity of the Congenital Glaucoma Caregiver's Quality of Life Questionnaire (CarCGQoL).

Purpose: The Caregiver's Congenital Glaucoma QoL (CarCGQoL) questionnaire was proposed as a measure of QoL of caregivers with children with primary congenital glaucoma (PCG). Support for its psychometric properties among other diagnostic groups is required for scores to be interpreted in the same manner across groups. Therefore we investigated the measurement properties and cross-diagnostic validity of the CarCGQoL questionnaire among caregivers of children with congenital cataract, retinopathy of prematurity (ROP), and blinding corneal disorders. Methods: Eight hundred ninety-one caregivers (mean age, 28.3 years; 76% mothers) of children with congenital cataract (n = 407), ROP (n = 272), and blinding corneal disorders (n = 212) completed the CarCGQoL questionnaire. Rasch analysis was used to investigate the psychometric properties. Unidimensionality (by principal components analysis of residuals, PCA) was examined for each group and for pooled sample. Differential item functioning (DIF) was investigated to explore whether bias in responses to the questionnaire existed for certain subgroups as compared to the reference group (PCG). Results: Across groups, six items necessitated removal because of misfit (two common and four uncommon), after which three different versions of the questionnaire emerged. Measurement precision was adequate for each group and for the pooled sample (0.80). Unidimensionality was observed, albeit with some DIF. Regardless of the level of QoL, caregivers in the pooled sample were more likely to endorse two items reflecting ability to face child's disease, and interest to pursue leisure activity, as compared with caregivers of children with PCG. Conclusions: Care must be taken when data from the CarCGQoL questionnaire from different pediatric ocular conditions are pooled, given the presence of DIF between the reference group (PCG) and the pooled sample. Translational Relevance: When evaluating the impact of interventions on the caregiver's QoL using the CarCGQoL questionnaire in a pooled sample of pediatric ocular conditions, cross-diagnostic DIF must be taken into account.

Primary Congenital Glaucoma: Trends in Presentation Over 3 Decades at a Tertiary Eye Care Center in India.

PRECIS: In this study, huge time delay was observed between first primary congenital glaucoma (PCG) symptom recognition by parents to ophthalmological diagnosis and this delay was unchanged over time. Bilateral affliction and mean presenting intraocular pressure (IOP) remained unaltered. PURPOSE: To compare the trends in presentation of patients with PCG over 3 different time periods at 10-year intervals (1998, 2008, and 2018) managed by a single surgeon at one of the largest tertiary eye care centers in South India. METHODS: Retrospective analysis of 313 eyes of 172 patients diagnosed to have PCG and treated at the L V Prasad Eye Institute (LVPEI) between January and December of the 3 specified years. Data collected included age at symptom recognition and at presentation, sex, affected eye, signs and symptoms, time between onset of symptoms and diagnosis (diagnostic delay), corneal clarity, and IOP. RESULTS: Of the 172 patients, 48 (27.9%), 76 (44.2%), and 48 (27.9%) belonged to 1998, 2008, and 2018, respectively. Bilateral affliction (79% to 84%) was common and there was no sex predilection. The median age at recognition of first symptoms by caregivers/parents was 1 day (interquartile range, 1 to 30), and at diagnosis was 120 days (interquartile range, 30 to 378). Overall, presentation to LVPEI was delayed by >3 months in 80 (46.5%) children, and there was no statistically significant difference in the duration of delay over time (P=0.13). There was no significant difference in the mean presenting IOP over time (P>0.05). CONCLUSIONS: We provide unique single center-based information of trends in the presentation of patients with PCG over 3 decades. Diagnostic delay was common, and a large number of characteristics of patients with PCG in South India have remained unchanged, particularly, age at onset and at diagnosis and laterality.

Beyond Intraocular Pressure: Visual Functioning and Quality of Life in Primary Congenital Glaucoma and Secondary Childhood Glaucoma.

PURPOSE: To compare the visual functioning (VF) and vision-related QoL (VRQoL) of children 8-18 years old treated for primary congenital glaucoma (PCG) and secondary childhood glaucoma. DESIGN: Cross-sectional study. METHODS: A total of 309 children 8-18 years old treated for PCG and secondary childhood glaucoma between 2000 and 2010 by a single pediatric glaucoma specialist were prospectively enrolled at LV Prasad Eye Institute, Hyderabad, India. Children completed 2 questionnaires, the LV Prasad Functional Vision Questionnaire-II (LVP-FVQ-II), and the Impact of Vision Impairment-Children (IVI-C) questionnaire. Rasch-calibrated scores from both these questionnaires were used to compare the VF and VFQoL between the 2 groups. RESULTS: Mean ages of the children were 12.2 and 12.6 years in the PCG (53%, median age at diagnosis = 5 months) and secondary glaucoma groups (47%, median age at diagnosis = 3 years), respectively. A majority (80%) of children had bilateral glaucoma and underwent filtering surgery (83%). Mean better eye logMAR visual acuity (VA) was comparable between PCG and secondary childhood glaucoma groups (0.49 vs 0.52, respectively; P = 0.59). Children with PCG reported significantly better VF and VRQoL than secondary childhood glaucoma patients. Unadjusted and adjusted childhood glaucoma group comparisons revealed secondary childhood glaucoma to be associated with worse VF and VRQoL compared to PCG (difference for VF, -0.83; 95% confidence interval [CI], -1.34 to 0.31; P = 0.002; 0.39; 95% CI, 0.16-0.62; P = 0.001 for VRQoL). CONCLUSIONS: Results show that children with treated PCG experience significantly better VF and VRQoL than those with secondary childhood glaucoma, despite comparable VA and IOP.

Psychometric Properties of an Indian Translation of the Vision-related Activity Limitation Item Bank in Cataract.

SIGNIFICANCE: The Indian translated and culturally adapted version of the vision-related activity limitation (VRAL) item bank is a validated instrument to assess the difficulty in performing daily activities by cataract patients and can also be used to capture self-reported changes in ability to perform daily activities after cataract surgery. PURPOSE: The purpose of this study was to document (a) translation, cross-cultural adaptation of VRAL item bank into an Indian language, and (b) its validation using Rasch analysis in a South Indian cataract population. METHODS: At the first stage, a translated Indian version of VRAL item bank was produced using recommended procedures. At the second stage, Rasch analysis was performed to investigate its psychometric properties in 787 cataract patients (mean age, 58.2 years; mean ± SD visual acuity [logMAR], 1.19 ± 0.96 at baseline in eye for surgery) including comparison with the original version. RESULTS: Post-translation equivalence of meaning was achieved, but some English phrases required cross-cultural adaptation. Subsequently, all items were appropriate for the Indian culture, and VRAL item bank demonstrated excellent measurement precision (7.39). Dimensionality assessment suggested that VRAL construct may contain other dimensions such as self-care and visual search, and mobility. Self-care and visual search formed a unidimensional measure but was highly correlated with main VRAL dimension, and the removal of its items weakened precision of the main VRAL dimension measurement. Taken together, evidence favored retaining self-care and visual search items in a larger VRAL item bank. Mobility subscale lacked adequate measurement precision, so it was not examined further; again, items were retained in VRAL scale because they strengthened its measurement properties. Majority of items (99%) did not demonstrate notable differential item functioning (>1.0 logit) by presenting visual acuity (median, 0.20 logMAR) in the better-seeing eye. CONCLUSIONS: Items in the translated Indian VRAL item bank measure the same construct as the English version and fulfilled the psychometric requirements for use in cataract patients.

Quality of life following surgery for congenital glaucoma: findings of the LVPEI congenital glaucoma registry.

PURPOSE: To evaluate the health-related quality of life (HRQoL) of children operated for primary congenital glaucoma (PCG) using the Kidscreen-27 questionnaire. METHODS: A total of 121 children (mean age, 11.8 years; SD, 2.8 years; 51% males) with unilateral or bilateral PCG who underwent glaucoma surgery in infancy (mean duration since surgery, 10.2 years; [SD] 4.2 years) by a single surgeon at a tertiary eye care centre were administered the Kidscreen-27 questionnaire (self-or interviewer administered in a face-to-face interview) during their routine follow-up visit. We investigated the measurement properties of Kidscreen-27 questionnaire using Rasch analysis and generated interval-level estimates of HRQoL. The main outcome measure was HRQoL (i.e., Rasch-derived Kidscreen score). Multivariable linear regression analyses assessed the influence of socio-demographic and clinical variables on the HRQoL of children with PCG. RESULTS: Majority (83%) of the children had bilateral PCG and congenital type of the disease (79%). Mean presenting acuity (logMAR) in the better eye was 0.32 (SD, 0.36; median, 0.18). Rasch analysis of Kidscreen-27 questionnaire indicated need for minor modifications following which a psychometrically robust unidimensional 23-item Kidscreen questionnaire emerged. In multivariable model, age of the child was independently associated with a 32% (ß = -0.24 [95% CI, -0.11, -0.36]) increase in the HRQoL score. CONCLUSIONS: Despite undergoing successful glaucoma surgery, children with PCG reported reduced HRQoL. Younger children with PCG are more likely to experience this lowered HRQoL and ophthalmologists will need to be alert to this. Efforts must be made to improve the HRQoL of children with PCG.

Parent-Child Agreement on Health-Related Quality of Life in Congenital Glaucoma.

PURPOSE: We assess parent-child agreement regarding child's health-related quality of life (HRQoL) in children operated for congenital glaucoma (CG). METHODS: A total of 121 children aged 8 to 18 years (mean age, 11.8 years) operated for CG (mean duration since surgery, 10.2 years) and their parents (mean age, 36.5 years) completed the child and parent versions of the Kidscreen-27 questionnaire, respectively. Psychometric properties of Kidscreen-27 were assessed using Rasch analysis, and child-parent agreement regarding child's HRQoL was investigated using the Bland-Altman limits of agreement (LoA) method. RESULTS: Minor modifications in the rating scale and deletion of few misfitting items resulted in a psychometrically robust Kidscreen-23 questionnaire. Average parental HRQoL score was higher than the child's own ratings, with a significant difference between their scores (mean ± standard deviation [SD] difference = 0.53 ± 2.58 logits, P = 0.02; lower LoA [95% CI], -4.52 [-5.31 to -3.72] and upper LoA [95% CI], 5.58 [4.79-6.38]). The range of child-parent agreement was wide and bidirectional, with parents tending to underestimate and overestimate their child's HRQoL. Younger children and girls showed greater discordance in their HRQoL with parental reports than adolescents and boys, respectively. CONCLUSIONS: Discordance between CG child's self-report of HRQoL and parent's report indicate that both groups perceive the broader impact of living with CG very differently. TRANSLATIONAL RELEVANCE: The HRQoL as reported by the child with CG and by his/her parent should be viewed as being complementary, rather than interchangeable. Both assessments should be taken into account in clinical practice and research studies.

Randomized Trial of Tablet Computers for Education and Learning in Children and Young People with Low Vision.

SIGNIFICANCE: Mobile devices such as tablet computers have become widely available as mainstream devices and are also used in some schools, but there is an absence of robust information regarding the efficacy of any optical/electronic low vision device or tablet computer in supporting education of young people with low vision. PURPOSE: A randomized controlled trial (RCT) is needed to measure the impact of tablet computers on education, specifically on independent access to educational material, in children and young people with low vision. We conducted a pilot RCT to determine the feasibility of conducting a full-scale trial. METHODS: This was a randomized multicenter pilot trial across two sites in the United Kingdom and one site in India. Forty children and young people aged 10 to 18 years with low vision (best-corrected visual acuity for distance between <20/60 [0.48 logMAR] and 20/400 [1.30 logMAR] in the better eye) in the United Kingdom (n = 20) and India (n = 20) were randomized to two parallel arms, with a 1:1 allocation ratio, to control (n = 20) or intervention (n = 20). Control group participants received standard low vision care. The intervention group received a tablet computer (iPad) with low vision applications and instruction in its use, including accessibility features. Four primary outcomes included (1) 6-month recruitment rate, (2) retention of participants for 3 months, (3) acceptance/usage of device, and (4) accessibility of device. RESULTS: Nineteen participants (95%) enrolled within 6 months in the United Kingdom, and 20 participants (100%), in India. Retention at 3 months was 85% (n = 17) in the United Kingdom and 95% (n = 19) in India. More than one half of participants reported using a tablet computer at school at least once every day. The majority (90%) found it easily accessible. CONCLUSIONS: This study demonstrated that it is feasible to recruit children and young people with low vision into an international multicenter RCT of electronic assistive technology. Regardless of geographical location, children and young people with low vision reported using tablet computers at least once a day at school and accessed them easily.