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Introduction: Management of lysosomal storage disorders (LSDs) requires periodic visits for medical surveillance and hospitalizations. Management of LSDs may have been adversely impacted during the COVID-19 pandemic. Objective: To identify the factors impacting health care for patients with LSDs during the COVID-19 pandemic. Methods: An observational study was conducted in Mumbai comparing infusion practices and reasons for missed infusions for 15 months before March 2020 versus two phases during the pandemic (April 2020–March 2021 and April 2021–March 2022) in patients receiving intravenous enzyme replacement therapy (ERT) and on oral substrate reduction therapy (SRT). Results: Fifteen patients with LSDs were enrolled. Before the pandemic, 6/13 (46%) were receiving ERT at the study site, 4/13 (31%) at a local hospital, and 3/13 (23%) at home; two were on SRT. The median distance traveled for receiving ERT was 37 km, and 4.4 infusions/patient were missed. From April 2020 to March 2021, two more patients opted for home ERT infusions. The median distance traveled for receiving ERT was 37 km, and 11.6 infusions/patient were missed. From April 2021 to March 2022, one more patient opted for home ERT infusions. The median distance traveled for receiving ERT was 7 km, and 5.6 infusions/patient were missed. The pandemic also affected SRT compliance adversely. For all patients, the cause of disrupted treatment was travel curbs (69%) and fear of getting COVID-19 infection (38%). Conclusions: Treatment of LSDs was disrupted during the pandemic, with an increase in missed ERT infusions and SRT doses. [ABSTRACT FROM AUTHOR]

This retrospective study analyzed the quality of 1069 referral letters written by school principals to our learning disability clinic. Utilizing a self-devised checklist having four domains (with 26 items), the audit revealed that in only nine (34.6%) items, the necessary information was available in >90% of referral letters. [ABSTRACT FROM AUTHOR]

Aims: The primary objective of the present study was to evaluate the economic burden of limited English proficiency (LEP) by estimating its direct, indirect, and intangible costs. A secondary objective was to assess the impact of variables on the economic burden. Design and Setting: A cross-sectional single-arm descriptive study conducted in a learning disability clinic in a public medical college in Mumbai. Subjects and Methods: The study cases (aged ≥8 years and ≤18 years) were recruited by non-probability sampling. A structured questionnaire was used to interview the parent to collect data related to direct and indirect costs. Intangible cost data were collected by documenting the willingness-to-pay value using the contingent valuation technique. Statistical Analysis Used: A multivariate regression model was used to assess the impact of predictor variables on the costs. Results: The direct, indirect, and intangible costs due to LEP were Indian Rupees (INR) 826,736, 3,828,220, and 1,906,300, respectively. Indirect costs comprised 82.2% of the total costs. Expenditure on tuition and remedial education comprised 39.86% and 14.08% of the indirect and direct costs, respectively. The average annual learning disability clinic costs were INR 2,169,146. The average annual total costs per student were INR 42,102. Higher socioeconomic status was predictive of increased "indirect costs", "total costs", and "intangible costs." Conclusion: LEP is a cost-intensive condition (indirect > intangible > direct costs). Non-medical costs are the costliest component of direct costs. Parental loss of earnings is the costliest component of indirect costs. [ABSTRACT FROM AUTHOR]

Aims: The primary objective of this study was to evaluate the economic burden of slow learners (students with "borderline intellectual functioning") by estimating its direct, indirect, and intangible costs. The secondary objective was to assess the impact of variables on the economic burden. Settings and Design: Cross-sectional, single-arm descriptive study. Setting: Learning disability clinic in a public medical college in Mumbai. Materials and Methods: The study cases (age ≥5 - 18 years) were recruited by nonprobability sampling. A structured questionnaire was used to interview the parent to collect data related to direct and indirect costs. Intangible costs data were collected by documenting the willingness-to-pay value using the contingent valuation technique. Statistical Analysis Used: A quantile regression model was used to assess the impact of predictor variables on the costs. Results: The direct, indirect, and intangible costs of slow learners were INR 6,065,915, 10,298,613, and 145,172,800, respectively. Indirect costs comprised 62.9% of the total costs. Expenditure on tuitions, medications, and remedial education comprised 57.38%, 16.18%, and 10.30% of the direct costs, respectively. The average annual total costs of slow learners were INR 3,544,880. The average annual learning disability clinic costs were INR 2,250,194. The average annual total costs per student were INR 57,951. Longer duration of poor school performance was predictive of higher direct and total costs. Conclusion: The economic burden of slow learners is enormous (intangible > indirect > direct costs). Tuitions are the most costly component of direct costs. Parental loss of earnings is the most costly component of indirect costs. [ABSTRACT FROM AUTHOR]

Aims: The primary objective of the present study was to evaluate the economic burden of specific learning disability (SpLD) by estimating its direct, indirect, and intangible costs. A secondary objective was to assess the impact of variables on the economic burden. Settings and Design: Cross-sectional single-arm descriptive study. Setting: Learning disability clinic in a public medical college in Mumbai. Subjects and Methods: The study cases (aged ≥8 years) were recruited by non-probability sampling. A structured questionnaire was used to interview the parent/guardian to collect data related to direct and indirect costs. Intangible costs data were collected by documenting the willingness-to-pay value using the contingent valuation technique. Statistical Analysis Used: A quantile regression model was used to assess the impact of predictor variables on the costs. Results: The direct, indirect, and intangible costs due to SpLD were Indian Rupees (INR) 5,936,053, 29,261,220, and 42,295,000, respectively. Indirect costs comprised 83.1% of the total costs. Expenditure on tuitions and remedial education comprised 61.61% and 64.39% of the indirect and direct costs, respectively. The average annual learning disability clinic costs were INR 2,169,888. The average annual total costs per student were INR 90,773. Longer duration of poor school performance was predictive of higher direct, indirect, and total costs; and higher socioeconomic status was predictive of lower intangible costs. Conclusion: SpLD is a cost-intensive disability (intangible > indirect > direct costs). Tuitions, which are not the therapy for SpLD, are the most costly component of indirect costs. Remedial education is the most costly component of direct costs. [ABSTRACT FROM AUTHOR]

Background and Objectives: Brain single-photon emission computed tomography (SPECT) assesses brain function through measurement of regional cerebral blood flow. This study was conducted to assess whether students with newly diagnosed specific learning disability (SpLD) show any abnormalities in cerebral cortex perfusion. Settings and Design: Cross-sectional single-arm pilot study in two tertiary care hospitals. Subjects and Methods: Nine students with SpLD were enrolled. Brain SPECT scan was done twice in each student. For the first or "baseline" scan, the student was first made to sit with eyes open in a quiet, dimly lit room for a period of 30–40 min and then injected intravenously with 20 mCi of 99mTc-ECD. An hour later, "baseline scan" was conducted. After a minimum gap of 4 days, a second or "test scan" was conducted, wherein the student performed an age-appropriate curriculum-based test for a period of 30–40 min to activate the areas in central nervous system related to learning before being injected with 20 mCi of 99mTc-ECD. Statistical Analysis Used: Cerebral cortex perfusion at rest and after activation in each student was compared qualitatively by visual analysis and quantitatively using NeuroGam™ software. Results: Visual analysis showed reduction in regional blood flow in temporoparietal areas in both "baseline" and "test" scans. However, when normalization was attempted and comparison done by Talairach analysis using NeuroGam software, no statistically significant change in regional perfusion in temporoparietal areas was appreciated. Conclusion: Brain SPECT scan may serve as a robust tool to identify changes in regional brain perfusion in students with SpLD. [ABSTRACT FROM AUTHOR]

This retrospective study analyzed the level of concordance between clinical and autopsy diagnosis of coarctation of aorta over 10 years. Utilizing the Goldmann classification, the concordance rate was found to be 16%. Major discrepancies (Class I and II) were found in 56% cases and minor discrepancies (Class III and IV) in 28% cases. [ABSTRACT FROM AUTHOR]

Background and Objectives: School students with specific learning disabilities (SpLDs) experience chronic academic underachievement and resultant stress. The present study aimed to determine if school students with newly diagnosed SpLD were more likely to have anxiety than their regular peers. Materials and Methods: The study cases (aged 8-15 years) were recruited from our institute’s learning disability clinic. The matched controls were recruited from four schools in Mumbai, Maharashtra, India. Anxiety was measured using the Spence Children’s Anxiety Scale (SCAS)-child self-report version questionnaire. Median SCAS scores and the proportion of students with an SCAS score in the “clinical anxiety” range were compared between the groups. Results: SCAS scores were significantly higher in 8-11-year-old learning-disabled male and female students (P < 0.0001 for both groups) and 12-15-year-old female students (P = 0.004), as compared with matched controls. A significantly higher number of learning-disabled students were found to have “clinical anxiety” [24.64% vs 4.35%, crude odds ratio (OR) = 7.19, 95% confidence interval (CI) 2.91-17.78, P = 0.0001], as compared with the controls regardless of gender, age group, presence of comorbid attention-deficit/hyperactivity disorder (ADHD), or associated medical conditions. A significantly higher proportion of 8-11-year-old learning-disabled students, especially males, were found to have “clinical anxiety” as compared with 12-15-year-old learning-disabled students (crude OR = 4.38, 95% CI 1.94-9.92, P = 0.0004). Gender, presence of comorbid ADHD or associated medical conditions, and type of school attended or curriculum did not impact the prevalence of “clinical anxiety” in learning-disabled students. Interpretation and Conclusions: Students with newly diagnosed SpLD have greater odds of being “clinically anxious” relative to their regular peers. We recommend screening for anxiety in children with SpLD immediately after diagnosis so that their optimum rehabilitation can be facilitated. [ABSTRACT FROM AUTHOR]

Background: Specific learning disability (SpLD) often remains undetected, resulting in the afflicted child experiencing chronic poor school performance. Aims: To measure and analyze the self-perceived healthrelated quality of life (HRQoL) of children with newly-diagnosed SpLD. Settings and Design: Cross-sectional questionnaire-based study in our clinic. Materials and Methods: From February to December 2008, 150 children consecutively diagnosed as having SpLD were enrolled and their HRQoL documented using the DISABKIDS chronic generic module self-report version instrument. Statistical Analysis: Multiple regression analysis was carried out for determining the 'independent' impact that each of the clinical and socio-demographic variables had on a poor facet score outcome and on a poor total score outcome. Results: Clinically significant deficits were detected in all 6 facets, namely: 'large deficits (effect size ⩾-0.8)' in ''social exclusion'', ''emotion'', ''limitation'', ''treatment'', and ''independence''; and 'medium deficit (effect size -0.5 to <-0.8)' in ''social inclusion''; and 'large deficit' in ''total score''. Multivariate analysis revealed that: (i) not belonging to the upper socio-economic strata of society was an independent predictor of a poor ''independence'' facet outcome (P=0.010, OR=1.99, 95% CI: 1.18 to 3.37); (ii) not having experienced class detainment was an independent predictor of a poor ''emotion'' facet outcome (P=0.008, OR=3.04, 95% CI: 1.34 to 6.85); (iii) first-born status was an independent predictor of a poor ''limitation'' facet outcome (P=0.022, OR=2.60, 95% CI: 1.15 to 5.90); and (iv) female gender was an independent predictor of a poor ''social exclusion'' facet outcome (P=0.024, OR=0.28, 95% CI: 0.09 to 0.85) and a poor ''overall health' 'outcome (P=0.025, OR=0.32, 95% CI: 0.12 to 0.87). Conclusions: Children with newly-diagnosed SpLD perceive their psychosocial, physical, and overall HRQoL to be significantly compromised. [ABSTRACT FROM AUTHOR]

Background: Parents of children with specific learning disability (SpLD) undergo stress in coping up with their child's condition. Aims: To document the parenting practices of parents having a child with newly diagnosed SpLD and to analyze their impact on parent-child relationships. Settings and Design: Cross-sectional questionnaire-based study in our clinic. Materials and Methods: From May 2007 to January 2008, 150 parents (either mother or father) of children consecutively diagnosed as having SpLD were enrolled. Parenting practices and parent-child relationships were measured by the Alabama Parenting Questionnaire-Parent Form (APQ-PF) and the Parent Child Relationship Questionnaire (PCRQ), respectively. Statistical Analysis Used: Pearson correlation coefficients between subscales of APQ-PF and PCRQ were computed. Multiple regression analysis was carried out for statistical significance of the clinical and demographic variables. Results: Parents who were: (i) "involved" in parenting had a good "personal relationship and disciplinary warmth," (ii) practicing "positive parenting" had good "warmth, personal relationship and disciplinary warmth," (iii) "poorly supervising" their child's activities lacked "warmth and personal relationship," (iv) practicing "inconsistent discipline' had a higher "power assertion" and (v) practicing "corporal punishment" lacked "warmth" and had a higher "power assertion and possessiveness" in their relationships with their child. Parent being poorly educated or currently ill and child having all three types of SpLD present concomitantly or a sibling or a sibling with a chronic disability or being in class standard IX to XI were variables that independently predicted a poor parenting or parent-child relationship subscale score. Conclusions: The present study has identified parenting practices that need to be encouraged or excluded for improving parent-child relationships. Initiating these measures would help in the rehabilitation of children with SpLD. [ABSTRACT FROM AUTHOR]