The Pediatric COVID-19 Registry in Kuwait: Methodology and Results of Pilot Phase.

OBJECTIVE: Establishing a pediatric COVID-19 registry in Kuwait (PCR-Q8) was deemed imperative during the pandemic to study children infected with severe acute respiratory syndrome-related coronavirus 2 (SARS-CoV-2) focusing on mode of presentation, therapeutic interventions, disease severity, and early outcomes. This manuscript describes the rapid establishment of the PCR-Q8 registry showcasing an infrastructure of the development process and presents the results of the pilot phase. SUBJECT AND METHODS: The registry was developed and implemented using the general key steps from a resource titled "Registries for Evaluating Patient Outcomes: A User's Guide" as a guide for best practice, experience from a previously established pediatric diabetes registry in Kuwait and several other COVID-19 registries developed globally. During the pilot phase, a convenience sample of 120 children was included, of whom 66 (55%) were male. RESULTS: Experience and expertise from other COVID-19 registries; guidance provided by the World Health Organization; and effective collaboration and cooperation between the stakeholders, study group, and data enterers during these challenging times were critical for the development and implementation of the registry. Our results were similar to international reports which showed that most children presented with mild disease (69.2%), majority (70.2%) had normal chest X-ray, and the most common symptom at presentation was fever (77%). CONCLUSION: We anticipate the development of PCR-Q8 to be a stepping-stone for more in-depth investigation of SARS-CoV-2 infection in children in Kuwait and for the establishment of other registries.

Clinical Characteristics of Children with HIV Initiated on Antiretroviral Treatment at HIV Clinics in Bloemfontein, South Africa.

BACKGROUND AND OBJECTIVE: Over the past 15 years, there have been three major updates to the South African national guidelines for the management of human immunodeficiency virus (HIV) in children. The purpose of this study is to describe the clinical characteristics of children who were initiated on antiretroviral therapy (ART) in Bloemfontein, South Africa, following these national treatment guidelines. METHODS: Clinical information during initiation of ART in children aged 0-13 years was obtained from five HIV clinics in Bloemfontein from 2004 to 2019 as part of the establishment of an antiretroviral (ARV) pediatric registry at the University of the Free State. Data were analyzed for patient demographics, clinical presentation (World Health Organization (WHO) HIV-staging, growth rate and comorbid conditions), types of investigations done, and medicines prescribed. RESULTS: The number of children initiated on ART increased from 168 in the period 2004-2009 to 349 (107.8%) in 2010-2014, and then dropped to 162 in the period 2015-2019. The increase in 2010-2014 was mainly in the <2 years age group by 54.8%, and in the 5 to 10 years age group by 344.4%. In the same period, the number of children with severe illness (WHO HIV-stage 4) decreased by 20.7%, while those with mild to moderate illness (WHO HIV-stage 2 and 3) increased by 17.3%. HIV infection was more severe in children under two years as more patients in this age group presented with WHO HIV-stages 3 and 4, severe underweight (below 3rd percentile), severely suppressed CD4 count (< 25%), and a high viral load (> 1000 copies/ml). There was increased use of ABC/3TC/LPVr in the < 3-year age group and ABC/3TC/EFV in the > 3-year age group. There was reduced use of the stavudine and other regimens. CONCLUSION AND GLOBAL HEALTH IMPLICATIONS: More children were started on ART and safer ARV drugs. Children under 2 years were the most debilitated by HIV, and there was an increase in HIV prevalence among children > 5 years. New strategies for the prevention and management of HIV among children in these two age groups are needed.

The Impact of COVID-19 Pandemic on Children with Pulmonary Arterial Hypertension. Parental Anxiety and Attitudes. Follow-Up Data from the Polish Registry of Pulmonary Hypertension (BNP-PL).

The COVID-19 pandemic has impacted healthcare systems worldwide. Little is known about the impact of the pandemic on medical and psycho-social aspects of children with rare diseases such as pulmonary arterial hypertension and their parents. The study is based on children registered in The Database of Pulmonary Hypertension in the Polish Population and a parent-reported survey deployed during the first 6 months of the pandemic. The questionnaire consisted of six question panels: demographic data, fear of COVID-19, General Anxiety Disorder-7 (GAD-7), social impact of pandemic, patients' medical status, and alarming symptoms (appearance or exacerbation). Out of 80 children registered, we collected 58 responses (72.5% response rate). Responders (parents) were mostly female (n = 55; 94.8%) at a mean age of 40.6 ± 6.9 years. Patients (children) were both females (n = 32; 55%) and males with a mean age of 10.0 ± 5.1 years. Eleven (19%) children had symptoms of potential disease exacerbation. Eight parents (72.7%) decided for watchful waiting while others contacted their GPs or cardiologists (n = 6; 54.5%). Three children had to be hospitalized (27.3%). Most planned hospitalizations (27/48; 56.2%) and out-patient visits (20/35; 57.1%) were cancelled, delayed, or substituted by telehealth services. Among the participating parents, the study shows very high levels of anxiety (n = 20; 34.5%) and concern (n = 55; 94.8%) and the need for detailed information (52; 89.6%) regarding COVID-19 and medical service preparedness during the pandemic. The COVID-19 pandemic has influenced child healthcare and caused high levels of anxiety among parents.

Children and Adolescents with Pulmonary Arterial Hypertension: Baseline and Follow-Up Data from the Polish Registry of Pulmonary Hypertension (BNP-PL).

We present the results from the pediatric arm of the Polish Registry of Pulmonary Hypertension. We prospectively enrolled all pulmonary arterial hypertension (PAH) patients, between the ages of 3 months and 18 years, who had been under the care of each PAH center in Poland between 1 March 2018 and 30 September 2018. The mean prevalence of PAH was 11.6 per million, and the estimated incidence rate was 2.4 per million/year, but it was geographically heterogeneous. Among 80 enrolled children (females, n = 40; 50%), 54 (67.5%) had PAH associated with congenital heart disease (CHD-PAH), 25 (31.25%) had idiopathic PAH (IPAH), and 1 (1.25%) had portopulmonary PAH. At the time of enrolment, 31% of the patients had significant impairment of physical capacity (WHO-FC III). The most frequent comorbidities included shortage of growth (n = 20; 25%), mental retardation (n = 32; 40%), hypothyroidism (n = 19; 23.8%) and Down syndrome (n = 24; 30%). The majority of children were treated with PAH-specific medications, but only half of them with double combination therapy, which improved after changing the reimbursement policy. The underrepresentation of PAH classes other than IPAH and CHD-PAH, and the geographically heterogeneous distribution of PAH prevalence, indicate the need for building awareness of PAH among pediatricians, while a frequent coexistence of PAH with other comorbidities calls for a multidisciplinary approach to the management of PAH children.