COVID-19 vaccination in individuals with spina bifida: A national survey.

PURPOSE: This study aimed to conduct a national survey of individuals with spina bifida (SB) and their care partners to assess COVID-19 vaccination behaviors and vaccine uptake. METHODS: A survey instrument was designed to assess current vaccination status, general perceptions towards vaccinations, and barriers to vaccination within the SB community. Surveys were administered to individuals with SB or their representing care partner. Chi-squared and independent-samples t-tests were used to analyze the relationship between vaccine uptake and demographics. Multivariable logistic regression modeling was used to test which predictors impacted the odds that a participant received a COVID vaccine. RESULTS: A total of 1,412 participants completed the questionnaire, and 1,145 participants reported their COVID-19 vaccine status. The most common reason for not getting vaccinated was a concern about vaccine safety and efficacy. Overall, healthcare professional recommendations played a significant (OR 2.77 p < 0.001) role in whether to get vaccinated. CONCLUSION: About one in five individuals with SB have not received any COVID-19 vaccine. Actionable and modifiable factors were identified which may help increase vaccine uptake. Importantly, health providers play a critical role in COVID-19 vaccination messaging and should emphasize vaccine safety and efficacy.

COVID-19 in a child with multiple comorbidities

A female child, 1 year-old and 2 months, diagnosed with multiple neurological conditions, including myelomeningocele and operated hydrocephalus, was diagnosed with SARS-CoV-2 in October 2020 and hospitalized in our clinic. At the time of the onset of the disease, the patient had a febrile episode, laboratory blood tests showed a slightly increased biologi-cal inflammatory syndrome, and mixed pneumonia was described radiologically. Thus, antibiotic treatment was initiated, with laboratory tests and control imaging within normal limits after several days of admission. Being an institutionalized child, according to the epidemiological recommendations of that time, she was hospitalized in our clinic during the 14 days of the illness. Thus, on the 15th day of the disease she was discharged, with negative SARS-CoV-2 control RT-PCR, with good general condition, afebrile over 10 days. © 2021, Amaltea Medical Publishing House. All rights reserved.

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

ObjectiveTo survey parents and carers of children with a congenital anomaly across Europe about their experiences of healthcare services and support during the COVID-19 pandemic.DesignCross-sectional study.SettingOnline survey in 10 European countries, open from 8 March 2021 to 14 July 2021.Population1070 parents and carers of children aged 0–10 years with a cleft lip, spina bifida, congenital heart defect (CHD) requiring surgery and/or Down syndrome.Main outcome measuresParental views about: the provision of care for their child (cancellation/postponement of appointments, virtual appointments, access to medication), the impact of disruptions to healthcare on their child’s health and well-being, and satisfaction with support from medical sources, organisations and close relationships.ResultsDisruptions to healthcare appointments were significantly higher (p<0.001) in the UK and Poland, with approximately two-thirds of participants reporting ‘cancelled or postponed’ tests (67/101;256/389) and procedures compared with approximately 20% in Germany (13/74) and Belgium/Netherlands (11/55). A third of participants in the UK and Poland reported ‘cancelled or postponed’ surgeries (22/72;98/266) compared with only 8% in Germany (5/64). In Poland, 43% (136/314) of parents reported that changes to their child’s ongoing treatment had moderately to severely affected their child’s health, significantly higher than all other countries (p<0.001). Satisfaction ratings for support from general practitioners were lowest in the UK and Poland, and lowest in Poland and Italy for specialist doctors and nurses.ConclusionA large proportion of participants reported disruptions to healthcare during the pandemic, which for some had a significant impact on their child’s health. Regional differences in disruptions raise questions about the competence of certain healthcare systems to meet the needs of this vulnerable group of patients and indicate improvements should be strived for in some regions.

Perioperative Management for Functional Ganglioneuroma in a 2-Year-Old Child with Multiple Congenital Defects and COVID-19: A Case Report

Unlike neuroblastoma, ganglioneuroma is a rare entity in children younger than 7 years of age. Further, these tumors are mostly inactive endocrinologically with the symptoms of abdominal pain or palpable mass. Unfortunately, when functional, they mimic or occasionally coexist with pheochromocytoma. While perioperative management of pheochromocytoma has evolved, very little is known regarding the perioperative management of functioning ganglioneuroma. Hormone secretion due to surgical manipulation and anaesthesia leads to life-threatening complications. The risk further increases when associated with other congenital comorbidities. Furthermore, the corona pandemic, in other words, coronavirus disease 2019 infection, in the perioperative period is another new challenge. We report perioperative management and outcome of a functioning retroperitoneal ganglioneuroma in a 2-year-old child, having a ventricular septal defect, spina bifida occulta, and coronavirus disease 2019. The case also highlights decision-making challenges during the coronavirus disease 2019 pandemic. [ FROM AUTHOR] Copyright of Turkish Journal of Anesthesia & Reanimation is the property of Turkish Society of Anaesthesiology & Reanimation and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

INNOVATIONS IN TELEMEDICINE SERVICES IN SPINA BIFIDA CLINICS IN THE U.S. DURING THE COVID-19 PANDEMIC

The COVID-19 pandemic has dramatically impacted delivery of outpatient care. Many people with spina bifida (SB) in the U.S. receive outpatient healthcare in a multidisciplinary setting. In accordance with state healthcare mandates, outpatient multidisciplinary clinic visits were deferred, postponed, or canceled, while telemedicine systems were implemented. A survey was created and distributed to all known SB clinics in the U.S. We explored the impact of the COVID-19 pandemic on the delivery of outpatient care for the SB population and the use of telemedicine in response. Novel uses of telehealth, benefits of use, suggestions for overcoming barriers, and future opportunities are identified and discussed.

Programme

Early Child Development: Findings and perspectives from birth cohorts in Brazil Panel Discussion Professor Linnea Karlsson, Centre for Population Health Research, University of Turku, Turku, Finland Dr Ghattu V Krishnaveni, Senior Scientist & DBT/Wellcome Trust India Alliance Senior Fellow, CSI Holdsworth Memorial Hospital, Mysore, India Dr Alicia Matijasevich, Associate Professor, University of São Paulo, Brazil Dr H Brotherton, London School of Hygiene & Tropical Medicine, UK & Dr M Crespo-Llado, University of Liverpool, UK 11:00 – 11:30 Coffee & comfort break 11:30 – 12:00 Keynote Lecture 2 A Historical Perspective on Child Development: The Shadow of Race Science & Eugenics Dr Angela Saini, Science journalist and author, UK Dr D Devakumar Institute for Global Health, University College London, UK 12:00 – 12:30 Keynote Lecture 3 Early child growth and development: similarities across populations;differences across phenotypes and exposotypes Professor Jose Villar, Professor of Perinatal Medicine & Co-director of the Oxford Maternal and Perinatal Health Institute, University of Oxford, UK Dr S Bhopal, Newcastle University & LSHTM, UK 12:30 – 13:15 Lunch 13:15 - 14:15 Group workshops Each attendee will be invited to select 2 sessions. Royal College of Paediatrics and Child Health Global Links Workshop 11: RCPCH International Child Health Advocacy Working Group Dr Randall Waechter, Associate Professor and Assistant Dean, St George’s University and WINDREF, Grenada, West Indies Dr Neelam Gupta, Consultant Neonatologist, Guys and St. Thomas’ Hospital NHS Foundation Trust, London, UK Dr Adejumoke Idowu Ayede, Consultant Neonatologist and Senior Lecturer, University of Ibadan and University College Hospital, Ibadan, Nigeria Ruth Nalugya, National Coordinator, Spina Bifida and Hydrocephalus Association, Uganda & Dr Cally Tann, Associate Professor, Global Newborn Health & ECD, LSHTM, London, UK Dr Amy Stevens, Public Health Registrar, Yorkshire and Humber School of Public Health, UK Dr Maria Crespo-Llado, Post-doctoral researcher, University of Liverpool, Liverpool, UK Professor Nihad Almasri, Professor of Paediatric Physiotherapy, University of Jordan, Jordan Dr Helen Brotherton, Consultant Paediatrician & Assistant Professor, LSHTM, London, UK Pavel Hrica, Director and co-founder, Cesta Von, Slovakia Dr Seb Taylor and Dr Marcus Wootton, RCPCH Global Links, UK ICHG Advocacy Group, RCPCH International Child Health Group Dr Maryke Nielsen, University of Liverpool, UK & Malawi Liverpool Wellcome Trust, Malawi 14:15 - 15:15 Plenary Session 2 Rescuing Child Development: From Science to Interventions Lecture 1: Relational early intervention - Saving Brains Grenada Dr Christine Parsons, Associate Professor, Aarhus University, Denmark Mrs Olga Shaw, Program Manager, CESTA VON, Slovakia Professor Barbara Landon, Co-PI, Savings Brain Director and Director, Psychological Services, Centre, WINDREF, Grenada, West Indies Dr M Fernandes, Universities of Southampton & Oxford, UK & Dr Charlotte Lau, NHS Lothian Trust, UK 15:15 – 15:30 Coffee & comfort break 15:30 – 16:00 Keynote Lecture 4 Children of the Pandemic: The Effects of COVID-19 on Family Life, Caregiving and Child Development Dr Tarun Dua, Unit Head, Brain Health, World Health Organisation, Geneva, Switzerland.

An Online-Based Transition Care Program for Adolescents with Spina Bifida Using Intervention Mapping: A Protocol for Program Development.

Adolescents with spina bifida (SB) face challenges in their transition to adulthood due to intensive medical regimens and delayed development of independence. Despite an increasing interest in the transition of adolescents with SB to adulthood, the clinical evidence of transition care remains limited, and existing studies have focused on the effects of intervention programs. This study aims to describe the process of systematically developing an online-based transition care program for adolescents with SB using the intervention mapping (IM) protocol. IM consists of six steps: (1) logic model of the problem; (2) program objectives; (3) program design; (4) program production; (5) plan to implement the program; (6) plan for evaluation. At first, five problems faced during the transition were identified, based on which four program objectives and six program strategies were established. The online transition care program for adolescents with SB was developed as a six-week program. The main strength of this program is that it reflects the diverse perspectives of adults with SB and health care professionals and is easy to apply because it is online. We aim to further validate the feasibility of this transitional care program to evaluate its effect based on our evaluation plan.

Maternal use of cough medications during early pregnancy and selected birth defects: a US multisite, case–control study

ObjectiveTo examine associations between maternal use of cough medications containing dextromethorphan (DM) without guaifenesin (glyceryl guaiacolate (GG)) (‘DM alone’), GG without DM (‘GG alone’) or DM +GG and major birth defects in offspring.DesignPopulation-based case–control study.SettingThe multisite, US National Birth Defects Prevention Study.ParticipantsMothers of 1644 children with neural tube defects (NTDs), 15 110 with non-NTDs, and 10 671 control children without a birth defect diagnosis.Main outcome measuresORs and 95% CIs.ResultsFor NTD analysis, 1.7% of mothers of case children and 1.2% of mothers of control children reported using DM alone, 1.1% and 0.6% GG alone, and 0.4% and 0.2% DM +GG. Respective percentages for non-NTD analysis were 2.2% and 1.9% for DM alone, 1.7% and 1.6% for GG alone, and 0.5% and 0.4% for DM +GG. For all NTDs and subtypes, adjusted OR estimates for DM alone were near the null with 95% CIs that included 1.0. Estimates (95% CI) were 1.8 (1.0 to 3.3) for GG alone and 1.8 (0.6 to 4.8) for DM +GG with all NTDs and 2.2 (1.1 to 4.3) for GG alone with spina bifida. Of the 45 adjusted OR estimates for non-NTDs, 39 ranged from 0.5 to 1.6 with 95% CIs that included 1.0. Near twofold or higher estimates (95% CI) were observed for the remainder and included 1.9 (1.0 to 3.7) for hydrocephalus, 2.9 (1.3 to 6.5) for atrioventricular septal defect and 1.8 (1.1 to 3.0) for transverse limb deficiency with DM alone;2.1 (1.1 to 4.0) for small intestinal atresia/stenosis and 2.1 (0.9 to 4.5) for omphalocele with GG alone;and 3.2 (1.5 to 6.9) for gastroschisis with DM +GG.ConclusionsMaternal use of medications containing DM alone, GG alone or DM +GG showed positive associations with a small number of birth defects. These observations, which should be interpreted with caution due to small proportions of exposed mothers, may represent true signals or chance findings and warrant evaluation in future studies.

Think globally, act locally: Quality improvement as a catalyst for COVID-19 related care during the transitional years.

The COVID-19 pandemic has posed distinctive challenges to adolescents and young adults living with spina bifida, especially those from ethic minority populations. With this public health challenge in mind, developing a customized electronic health record to leverage registry data to promote and quantify COVID-19 vaccination uptake among this population is feasible. We provide a brief description of our activities in customizing an electronic health record to track vaccination uptake among adolescents and young adults with spina bifida (AYASB); and the lessons learned, in hopeful support of those scaling-up vaccination delivery across the globe for AYASB as they transition to adult-centered care. Thus, as providers think globally and act locally, COVID-19 immunization efforts can be implemented while providing culturally appropriate transition policies and services for individuals with neurodevelopmental disabilities.

The Unique Properties of Placental Mesenchymal Stromal Cells: A Novel Source of Therapy for Congenital and Acquired Spinal Cord Injury.

Spinal cord injury (SCI) is a devasting condition with no reliable treatment. Spina bifida is the most common cause of congenital SCI. Cell-based therapies using mesenchymal stem/stromal cells (MSCS) have been largely utilized in SCI. Several clinical trials for acquired SCI use adult tissue-derived MSC sources, including bone-marrow, adipose, and umbilical cord tissues. The first stem/stromal cell clinical trial for spina bifida is currently underway (NCT04652908). The trial uses early gestational placental-derived mesenchymal stem/stromal cells (PMSCs) during the fetal repair of myelomeningocele. PMSCs have been shown to exhibit unique neuroprotective, angiogenic, and antioxidant properties, all which are promising applications for SCI. This review will summarize the unique properties and current applications of PMSCs and discuss their therapeutic role for acquired SCI.

A Systematic Review of Cognitive Function in Adults with Spina Bifida.

Background: Though much research has been done on the cognitive profiles of children, the abilities of patients with SBM as they age into adulthood are not well understood.Objective: Determine if adults with SBM have impairments in overall cognition, attention, executive function, and memory compared to typically developing adults or a standardized population mean.Methods: A medical librarian composed a search of spina bifida, adults, and cognitive function. 549 results were screened using title and abstract. Data were extracted using Covidence review software, including risk of bias assessments. 24 studies were included.Results: Memory impairments, notably working and prospective, have been reported. Results in other domains varied. Average VIQ or PIQ did not imply lack of impairment in other specific domains.Conclusion: Memory impairments should be accounted for and neuropsychological testing should be considered when providing care to adults with SBM. Future longitudinal cognitive aging and interventional studies are needed.

"We Are Anxious Every Day": COVID-19 Impacts on Youth with Spina Bifida.

OBJECTIVE: This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB. METHODS: AYA with SB (15-25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis. RESULTS: Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes. CONCLUSIONS: The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

Guidelines and scientifically-based spina bifida care: Guidance across the lifespan in a global health context.

The COVID-19 pandemic has reminded us that, if of nothing else, we live in a globalized community. Enthusiasm for evidenced-based medical knowledge is also contagious. Just as the incidence of SARS-CoV-2, the associated coronavirus, has had a borderless impact on global public health, so too neural tube defects have widespread significance. Previously, the concept of "blue marble health" was introduced as a policy framework to illustrate trends in the geographic distribution of health disparities affecting at-risk populations that live, not only in low-income countries, but also in pockets of the populace in wealthier nations. Subsequently, the Spina Bifida Association's Collaborative Care Network, through a cooperative agreement with the Centers for Disease Control and Prevention, recently produced the "Guidelines for the Care of People with Spina Bifida." While language differences, immigration, cultural beliefs, acculturation, local resources and social determinants of health, must be taken into account when these guidelines are implemented across the globe, they could not come at a more suitable time. The current digital age, as well as open access to this special issue, will ensure their ongoing wide distribution.