Locked down-locked in: experiences of families of young children with autism spectrum disorders in Delhi, India.

Introduction: The onset of the COVID-19 pandemic and subsequent lockdowns in March 2020 disrupted the lives of families across India. The lockdown related restrictions brought forth a multitude of challenges including loss of employment, social isolation, school closures and financial burdens. Specifically, it also resulted in the restriction of health-care services for children with neurodevelopmental disabilities. Methods: This qualitative study was conducted as a part of a larger trial in India to understand the experiences of families of young children with autism during the pandemic. In-depth interviews were carried out with 14 caregivers residing in New Delhi, India. Results: Our findings identified pandemic and lockdown's universal impacts on family life and financial stability stemming from job loss, business closure, and salary deductions, affecting quality of life of families. Furthermore, COVID-19 pandemic's impact on autistic children was evident through limited access to essential services and financial challenges related service interruptions even after resumption of services. The lockdown's novelty also affected children's behavior, with both challenging behavioral changes and positive impacts. Primary caregivers, predominantly mothers, assumed additional responsibilities in household tasks, schooling, and therapy administration. While some these experiences were universally experienced, a few of these improved outcomes for autistic children. Despite challenges, parents expressed gratitude for their family's safety and well-being during the difficult time. Discussions: These findings inform service provision for vulnerable families and offer implications for designing interventions such as credit schemes for families, guidance and resources for establishing and maintaining routines of children with autism, adopting flexible and adaptable approaches to service delivery, and special provisions for children with autism to be able to maintain their routines outside of home. Furthermore, the study highlights the need for comprehensive support, including educational resources and stress management counselling to empower parents in supporting essential care and routines for their children during such unprecedented times.

A randomised controlled trial of clinical and cost-effectiveness of the PASS Plus intervention for young children with autism spectrum disorder in New Delhi, India: study protocol for the COMPASS trial.

BACKGROUND: Autism Spectrum Disorder (ASD) is a neurodevelopmental disability affecting at least 5 million children in South Asia. Majority of these children are without access to evidence-based care. The UK Pre-school Autism Communication Therapy (PACT) is the only intervention to have shown sustained impact on autism symptoms. It was systematically adapted for non-specialist community delivery in South Asia, as the 'Parent-mediated Autism Social Communication Intervention for non-Specialists (PASS)' and extended 'PASS Plus' interventions. RCTs of both showed feasibility, acceptability and positive effect on parent and child dyadic outcomes. METHODS: The Communication-centred Parent-mediated treatment for Autism Spectrum Disorder in South Asia (COMPASS) trial is now a scale-up two-centre, two-arm single (rater) blinded random allocation parallel group study of the PASS Plus intervention in addition to treatment as usual (TAU) compared to TAU alone, plus health economic evaluation embedded in the India health system. Two hundred forty children (approximately 120 intervention/120 TAU) with ASD aged 2-9 years will be recruited from two tertiary care government hospitals in New Delhi, India. Accredited Social Health Activists will be one of the intervention delivery agents. Families will undertake up to 12 communication sessions over 8 months and will be offered the Plus modules which address coexisting problems. The trial's primary endpoint is at 9 months from randomisation, with follow-up at 15 months. The primary outcome is autism symptom severity; secondary outcomes include parent-child communication, child adaptation, quality of life and parental wellbeing. Primary analysis will follow intention-to-treat principles using linear mixed model regressions with group allocation and repeated measures as random effects. The cost-effectiveness analysis will use a societal perspective over the 15-month period of intervention and follow-up. DISCUSSION: If clinically and cost-effective, this programme will fill an important gap of scalable interventions delivered by non-specialist health workers within the current care pathways for autistic children and their families in low-resource contexts. The programme has been implemented through the COVID-19 pandemic when restrictions were in place; intervention delivery and evaluation processes have been adapted to address these conditions. TRIAL REGISTRATION: ISRCTN; ISRCTN21454676 ; Registered 22 June 2018.

Autoimmune encephalitis: A diagnostic enigma.

Autoimmune encephalitis with anti-NMDA (N-methyl-D-aspartate) receptor encephalitis is the most common type. This condition can be associated with underlying malignancy, making appropriate screening essential. Prompt identification and intervention of autoimmune encephalitis is essential for a successful outcome and full recovery from this serious and potentially fatal condition. Immunotherapy is typically used to suppress the immune response and reduce brain inflammation. The choice of therapy depends on the type and severity of autoimmune encephalitis, as well as the presence of an underlying tumour.

Lung Ultrasound: A Complementary Imaging Tool for Chest X-Ray in the Evaluation of Dyspnea.

The present study was designed to evaluate the spectrum of imaging findings seen on chest ultrasonography in patients presenting with dyspnea and verify the concordance between chest X-ray and chest ultrasound. Methods Fifty-three patients presenting with dyspnea were included in this study. Patients with known/suspected cardiac disease were excluded from the study. All patients underwent chest X-ray and chest ultrasound, reported by two different investigators. The concordance was analyzed using Cohen's kappa value with a ' p -value' less than 0.05 considered statistically significant. Results Among the fifty-three patients with dyspnea, five diagnostic pathologies were evaluated. Concordance between lung ultrasound and chest X-ray for diagnosis of pneumonia, pneumothorax, acute exacerbation of COPD/severe asthma, and diffuse alveolar interstitial syndrome was found to be high with Cohen's kappa value > 0.8 ( p < 0.01). Ultrasound was able to correctly diagnose more cases of pneumothorax and pulmonary edema compared with chest X-ray with sensitivity and negative predictive value of 100%. Chest X-ray was found to be superior in correctly diagnosing COPD. The difference was, however, not statistically significant. Similarly, no statistically significant difference could be inferred between the diagnostic value of ultrasound and Chest X-ray in the diagnosis of pneumonia or pleural effusion. Conclusions A high concordance was noted between ultrasound and chest X-ray for diagnosis of all pathologies studied ( p < 0.01), the highest noted in pneumonia/pleural effusion and diffuse interstitial syndrome (κ = 0.9). Hence, ultrasound may be considered a complimentary imaging modality for Chest-X-ray in the evaluation of dyspnea.

Comparison of Neurodevelopmental Status in Early Infancy of Infants of Women With and Without Gestational Diabetes Mellitus.

OBJECTIVES: To study the neurodevelopmental status of offsprings of mothers with gestational diabetes (OGDM) aged 3½ mo. METHODS: This cross-sectional study was conducted at a tertiary hospital, New Delhi which included infants aged 3½ mo (+1 wk) who were either offsprings of women with gestational diabetes (cases) or infants of mothers without gestational diabetes mellitus presenting to tertiary care public hospital in India from January, 2018 through March, 2019, with enrollment of infants done between 10 April, 2018 and 30 March, 2019. RESULTS: The development quotient (DQ) using Developmental Assessment Scales for Indian Infants (DASII) was calculated as Motor DQ, Mental DQ and a composite DQ. The mean motor DQ of the enrolled infants was 101.7 (12.02); it was significantly lower for OGDM than controls [101 (1.41) vs. 109.5 (10.6); P <0.001]. The mean mental DQ of the enrolled infants was 88.9 (12.0); it was significantly lower for OGDM than the control group [84 (9.89 vs. 88 (8.48); P = 0.03]. The total development quotient for the enrolled infants was 95.3 (11.3). The total development quotient for study group was significantly lower than the control group [92.5 (5.65) vs. 98.75 (9.54); P = 0.001]. CONCLUSIONS: The mean motor, mental total DQ of offsprings of mothers with GDM were significantly lower than those born to mothers without GDM. Hence follow up, early intervention should be considered for this high risk group.

Factors Affecting Quality of Life in Adolescent Siblings of Children With Autism Spectrum Disorder.

OBJECTIVE: To compare the quality of life (QoL) of adolescent siblings of children with autism spectrum disorder (ASD-Sibs) with siblings of typically developing children (TD-Sibs), and study the factors affecting the QoL. METHODS: Between 1 February, 2021 and 31 September, 2021, 40 children aged 10-18 years, whose sibling was suffering from ASD, were enrolled (Study group). 40 age- and sex-matched siblings of children with no clinically apparent neuro- developmental abnormality or behavioral problem were also enrolled (Control group). Severity of autism was assessed by using the childhood autism rating scale 2 (CARS-2) score. QoL was assessed by a validated version of the World Health Organi-zation Quality of Life questionnaire Brief version (WHO QoL BREF), and compared between cases and controls using Wilcoxon rank sum test. RESULTS: The mean (SD) age of study participants was 13.55 (2.75) years. The mean (SD) CARS-2 score of our sample was 35.78 (5.23). Mild to moderate autism was seen in 23 (57.5%) children, and 13 (32.5%) had severe autism. The median (IQR) QoL in ASD-Sibs was worse than TD-Sibs in physical domain (24 (19,26) vs 32 (29,32); P<0.001), psychological domain (22 (17,23) vs 25 (23,25); P<0.001), social domain (11 (8,12) vs 13 (11,14); P<0.001), and environmental domain (28 (26,31) vs 35 (31,35); P<0.001). Among the ASD-Sibs, severity of the sibling's ASD and the family's socioeconomic status were the only two factors significantly affecting one of the domains of QoL. CONCLUSION: The observed lower QoL score in adolescent siblings of children with ASD, more so in those whose siblings had more severe ASD, suggests the need for targeting the family as a unit while formulating plans for holistic management of children with ASD.

Practical Aspects of ASD Management-What Pediatricians Should Know.

The increasing prevalence of autism spectrum disorder (ASD) warrants higher levels of clinical attention to optimally manage children with ASD. There is mounting evidence that early intervention programs can help improve developmental functioning, maladaptive behaviors, and core ASD symptoms. The most thoroughly investigated and evidence-based therapies have been developmental, behavioral, and educational interventions mediated by either professionals or parents. Other commonly available interventions include speech and language therapy, occupational therapy, and social skills training. Pharmacological interventions, where needed, are used as an adjunct to treat severe problem behaviors and manage medical and psychiatric comorbidities. Complementary or alternative medicine (CAM) approaches have not proven to be of any benefit, and some of them may be harmful to the child. As the child's first point of contact, the pediatrician is well-positioned to effectively guide the families to therapies that are evidence-based and safe and also collaborate with various specialists to provide seamless, coordinated care for these children so as to improve their developmental outcomes and social functioning.

Effect of Propranolol Prophylaxis on Headache Frequency in Children with Migraine Without Aura: A Randomized, Double-Blind, Placebo-Controlled Trial.

OBJECTIVE: To compare the efficacy of propranolol prophylaxis with placebo on headache frequency in children with migraine over the 3-mo follow-up. METHODS: In this randomized, double-blind, placebo-controlled trial children aged 6-12 y with newly diagnosed migraine without aura as per the International Classification for Headache Disorders, 3rd edition (ICHD-3) criteria were enroled. They were randomized to the intervention group receiving oral propranolol (1-3 mg/kg/d, BID) and the control group receiving a similar looking, inert, oral placebo for migraine prophylaxis for 3 mo. The number of migraine attacks over the 3-mo follow-up (using a headache diary) was the primary outcome. Pediatric Migraine Disability Assessment Scale (PedMIDAS) was used for assessing disability and Visual analogue scale was used for assessing headache severity. Analysis was done on intention-to-treat basis. RESULTS: Twenty children (10 in each group) completed the study. The two groups were similar at baseline. Both the study drugs produced significant reduction of headache frequency after the study intervention (p = 0.002). However, there was no difference between the two groups with respect to either the median (IQR) number of headache attacks [22 (20, 25) vs. 14 (10, 20); p = 0.05], headache severity [1 (0, 1) vs. 0.5 (0, 1); p = 0.48] or migraine disability [39.5 (28, 44) vs. 35 (22, 38); p = 0.27]. Adverse effects were higher in the intervention group (p = 0.52). CONCLUSIONS: Propranolol was effective for migraine prophylaxis in children but the effect was not higher than placebo. Larger placebo-controlled trials of propranolol need to be conducted to decide its place in migraine prophylaxis in children. TRIAL REGISTRATION: Thailand Clinical Trials Registry; TCTR20200621001.

Trihexyphenidyl in young children with dystonic cerebral palsy: A single arm study.

PURPOSE: The incidence of dystonic cerebral palsy causing significant morbidity is on the rise. There is a paucity of evidence for the management of dystonia in children. METHODS: Forty-one children aged 6 months-5 years with predominantly dystonic cerebral palsy were started on a predetermined protocol of trihexyphenidyl (0.25-0.52 mg/kg) and followed up at 3, 6 and 12 weeks. Dystonia severity, motor function and developmental age at baseline and 12 weeks were compared using the Global Dystonia Scale (GDS), the Gross Motor Function Measure (GMFM), and Fine Motor/Perceptual Subscale of the Early Developmental Profile-2. Thirty-four children completed the entire 12 weeks of intervention. RESULTS: The mean age of participants was 25±11 months. A significant decrease in median total dystonia scores on the GDS was observed post-intervention (74.5 to 59, p < 0.0001), and 64% of participants gained motor milestones. GMFM scores increased significantly from a median of 19.8% pre-intervention to 26.5% post-intervention (p < 0.0001). There was improvement in the fine motor domain as compared to the baseline (p < 0.0001). The number of children classified at Gross Motor Function Classification System levels 1 and 2 increased to 47.05% from 5.88% in the pre-intervention group. CONCLUSION: Trihexyphenidyl significantly improved dystonia, motor function and development in children with dystonic cerebral palsy in this study. Additional studies are needed to clarify its role in larger numbers of children with this condition.

Lung ultrasound for evaluation of dyspnea: a pictorial review.

Lung ultrasound is based on the analysis of ultrasound artifacts generated by the pleura and air within the lungs. In recent years, lung ultrasound has emerged as an important alternative for quick evaluation of the patient at the bedside. Several techniques and protocols for performing lung ultrasound have been described in the literature, with the most popular one being the Bedside Lung Ultrasound in Emergency (BLUE) protocol which can be utilized to diagnose the cause of acute dyspnea at the bedside. We attempt to provide a simplified approach to understanding the physics behind the artifacts used in lung ultrasound, the imaging techniques, and the application of the BLUE protocol to diagnose the commonly presenting causes of acute dyspnea.

Clinical Profile and Treatment Outcomes of Hypermanganesemia with Dystonia 1 and 2 among 27 Indian Children.

Background: Hypermanganesemia with dystonia 1 and 2 (HMNDYT1 and 2) are rare, inherited disorders of manganese transport. Objectives: We aimed to describe clinical, laboratory features, and outcomes among children with HMNDYT. Methods: We conducted a retrospective multicenter study involving tertiary centers across India. We enrolled children between 1 month to 18 years of age with genetically confirmed/clinically probable HMNDYT. Clinical, laboratory profile, genetic testing, treatment details, and outcomes scored by treating physicians on a Likert scale were recorded. Results: We enrolled 27 children (19 girls). Fourteen harbored SLC30A10 mutations; nine had SLC39A14 mutations. The SLC39A14 cohort had lower median age at onset (1.3 [interquartile range (IQR), 0.7-5.5] years) versus SLC30A10 cohort (2.0 [IQR, 1.5-5.1] years). The most frequent neurological features were dystonia (100%; n = 27), gait abnormality (77.7%; n = 21), falls (66.7%; n = 18), and parkinsonism (59.3%; n = 16). Median serum manganese (Mn) levels among SLC39A14 (44.9 [IQR, 27.3-147.7] mcg/L) cohort were higher than SLC30A10 (29.4 [17.1-42.0] mcg/L); median hemoglobin was higher in SLC30A10 (16.3 [IQR, 15.2-17.5] g/dL) versus SLC39A14 cohort (12.5 [8.8-13.2] g/dL). Hepatic involvement and polycythaemia were observed exclusively in SLC30A10 variants. A total of 26/27 children underwent chelation with disodium calcium edetate. Nine demonstrated some improvement, three stabilized, two had marked improvement, and one had normalization. Children with SLC39A14 mutations had poorer response. Two children died and nine were lost to follow-up. Conclusions: We found female predominance. Children with SLC39A14 mutations presented at younger age and responded less favorably to chelation compared to SLC30A10 mutations. There is emerging need to better define management strategies, especially in low resource settings.

Development of a cost of illness inventory questionnaire for children with autism spectrum disorder in South Asia.

BACKGROUND: The economic burden of autism is substantial and includes a range of costs, including healthcare, education, productivity losses, informal care and respite care, among others. In India, approximately, 2 million children aged 2-9 years have autism. Given the likely substantial burden of illness and the need to identify effective and cost-effective interventions, this research aimed to produce a comprehensive cost of illness inventory (COII) suitable for children with autism in South Asia (India) to support future research. METHODS: A structured and iterative design process was followed to create the COII, including literature reviews, interviews with caregivers, pilot testing and translation. Across the development of the COII, thirty-two families were involved in the design and piloting of the tool. The COII was forward translated (from English to Hindi) and back translated. Each stage of the process of development of the COII resulted in the further refinement of the tool. RESULTS: Domains covered in the final COII include education, childcare, relocation, healthcare contacts (outpatient, inpatient, medical emergencies, investigations and medication), religious retreats and rituals, specialist equipment, workshops and training, special diet, support and care, certification, occupational adjustments and government rebates/schemes. Administration and completion of the COII determined it to be feasible to complete in 35 minutes by qualified and trained researchers. The final COII is hosted by REDCap Cloud and is a bilingual instrument (Hindi and English). CONCLUSIONS: The COII was developed using experiences gathered from an iterative process in a metropolitan area within the context of one low- and middle-income country (LMIC) setting, India. Compared to COII tools used for children with autism in high-income country settings, additional domains were required, such as complimentary medication (e.g. religious retreats and homeopathy). The COII will allow future research to quantify the cost of illness of autism in India from a broad perspective and will support relevant economic evaluations. Understanding the process of developing the questionnaire will help researchers working in LMICs needing to adapt the current COII or developing similar questionnaires.

Diagnosis and Management of Global Development Delay: Consensus Guidelines of Growth, Development and Behavioral Pediatrics Chapter, Neurology Chapter and Neurodevelopment Pediatrics Chapter of the Indian Academy of Pediatrics.

JUSTIFICATION: Global developmental delay (GDD) is a relatively common neurodevelopmental disorder; however, paucity of published literature and absence of uniform guidelines increases the complexity of clinical management of this condition. Hence, there is a need of practical guidelines for the pediatrician on the diagnosis and management of GDD, summarizing the available evidence, and filling in the gaps in existing knowledge and practices. PROCESS: Seven subcommittees of subject experts comprising of writing and expert group from among members of Indian Academy of Pediatrics (IAP) and its chapters of Neurology, Neurodevelopment Pediatrics and Growth Development and Behavioral Pediatrics were constituted, who reviewed literature, developed key questions and prepared the first draft on guidelines after multiple rounds of discussion. The guidelines were then discussed by the whole group in an online meeting. The points of contention were discussed and a general consensus was arrived at, after which final guidelines were drafted by the writing group and approved by all contributors. The guidelines were then approved by the Executive Board of IAP. Guidelines: GDD is defined as significant delay (at least 2 standard deviations below the mean with standardized developmental tests) in at least two developmental domains in children under 5 years of age; however, children whose delay can be explained primarily by motor issues or severe uncorrected visual/hearing impairment are excluded. Severity of GDD can be classified as mild, moderate, severe and profound on adaptive functioning. For all children, in addition to routine surveillance, developmental screening using standardized tools should be done at 9-12 months,18-24 months, and at school entry; whereas, for high risk infants, it should be done 6-monthly till 24 months and yearly till 5 years of age; in addition to once at school entry. All children, especially those diagnosed with GDD, should be screened for ASD at 18-24 months, and if screen negative, again at 3 years of age. It is recommended that investigations should always follow a careful history and examination to plan targeted testing and, vision and hearing screening should be done in all cases prior to standardized tests of development. Neuro-imaging, preferably magnetic resonance imaging of the brain, should be obtained when specific clinical indicators are present. Biochemical and metabolic investigations should be targeted towards identifying treatable conditions and genetic tests are recommended in presence of clinical suspicion of a genetic syndrome and/or in the absence of a clear etiology. Multidisciplinary intervention should be initiated soon after the delay is recognized even before a formal diagnosis is made, and early intervention for high risk infants should start in the nursery with developmentally supportive care. Detailed structured counselling of family regarding the diagnosis, etiology, comorbidities, investigations, management, prognosis and follow-up is recommended. Regular targeted follow-up should be done, preferably in consultation with a team of experts led by a developmental pediatrician/ pediatric neurologist.

"I was Confused and Still am" Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study.

Timely recognition of autism in children is integral to improve developmental outcomes. This study used mixed-methods (84 case-registers and 20 in-depth interviews with caregivers of children with a diagnosis of autism) to explore the extent to which the nature of parental concerns and prior knowledge of developmental disorders impact the time between symptom recognition and autism diagnosis, and the contextual family, societal and health-system related factors that impede the autism help-seeking pathway. Lack of awareness of age-appropriate child developmental milestones, apparent amongst the community and health professionals, contributed to a 1.5-year delay between parental concerns and autism diagnosis. Recommendations to shorten this help-seeking pathway include harnessing the potential of non-specialist workers to increase awareness and enable developmental monitoring of young children through scalable tools.

Indian Academy of Pediatrics (IAP) Task Force Recommendations for Incorporating Nurturing Care for Early Childhood Development (NC-ECD) in Medical Education in India.

BACKGROUND: The World Health Organization (WHO) recommends promotion of nurturing care for early childhood development (NC-ECD) by focusing on five essential components viz., good health, adequate nutrition, promotion of early childhood learning, responsive caregiving, and safety and security. Indian medical graduates and pediatricians are the keys to successful delivery and propagation of NC-ECD in the community. Their training therefore needs to include skills and knowledge needed to promote and practice ECD. OBJECTIVE: To evaluate the existing undergraduate (UG) and postgraduate (PG) curricula of pediatrics for components related to early childhood development, assess gaps in the training essential to practice and promote ECD, and suggest recommendations to incorporate NC-ECD in the UG and PG curricula. PROCESS: Indian Academy of Pediatrics created a task force to review the UG/PG medical curricula, consisting of experts from pediatrics and medical education. The task force deliberated on 20 March, 2021 and identified the gaps in current curricula and provided suggestions to strengthen it. The recommendations of the task force are presented here. RECOMMENDATIONS: Taskforce identified that the UG/PG medical curricula are lacking training for propagating early childhood learning, responsive caregiving, caregiver support, and ensuring safety and security of children. The taskforce provided a list of competencies related to ECD that need to be included in both UG and PG curriculum. NC-ECD should also be included in topics for integrated teaching. Postgraduates also need to be exposed to hands-on-training at anganwadis, creches, and in domestic setting.

Clinical profile and short-term course of post-traumatic headache in children with mild traumatic brain injury: a prospective cohort study.

OBJECTIVE: To study the clinical profile and factors associated with post-traumatic headache (PTH) in children with mild traumatic brain injury (mTBI) attending an urban public hospital. METHODS: We enrolled 130 consecutive children aged 6-12 years with mTBI (as per the International Classification of Headache Disorders-III criteria), and followed them up for 7 days. Those who developed PTH were further followed up monthly for 3 months. RESULTS: Thirty (23.1%) children developed PTH; 25 (19.2%) children had acute PTH (duration 7 days to 3 months) and the remaining 5 (3.8%) developed persistent PTH (> 3 months). Majority (50%) had bilateral headache and squeezing quality (50%). Forty percent of those with PTH met the criteria for migraine. Obesity (P = 0.84), female gender (P = 0.26), family history of headache (P = 0.93), and prior history of concussion (P = 0.70) were not associated with risk of PTH. Children who developed PTH had higher rate of nausea (RR (95% CI) = 2.42 (1.06, 5.5); P = 0.03) and vomiting (RR (95% CI) = 3.76 (1.64, 8.5); P = 0.001) after mTBI. Headache resolved within 1 month in 63.3% of children. CONCLUSION: PTH was found to be common after mTBI in children. Protocolized follow-up and directed history taking for PTH in all children with mTBI, who are frequently discharge from the emergency department after first aid, will lead to appropriate diagnosis and management of this problem.