scholarly journals P.121 Leading the Way to the Future: Implementing Novel Therapeutics for Rare Pediatric Neurological Disorders

2021 ◽  
Vol 48 (s3) ◽  
pp. S54-S54
Author(s):  
E Nigro ◽  
E Law
Keyword(s):  
Children And Adolescents ◽  
Neurological Disorders ◽  
Positive Impact ◽  
Muscular Atrophy ◽  
Neuronal Ceroid Lipofuscinosis ◽  
Implementation Process ◽  
Standard Of Care ◽  
Funding Agencies ◽  
Neurogenetic Disorders ◽  
Health Canada

Background: Children and Adolescents with rare neurogenetic disorders often have no known cure or disease modifying treatments. Recent advancements in treatments are offering much needed hope to these patients and families. However, these treatments are extremely costly, have complex administration requirements and have many unknown long-term risks and outcomes. Methods: In this presentation, we will discuss our experiences with the implementation process, including developing intricate care pathways, collaborating with multiple disciplines and services, supporting and advocating for our patients and families, and interacting with government agencies and pharmaceutical companies. Case studies will highlight the positive impact these treatments are making on the lives of children and adolescents with rare neurological disorders. Results: Spinal muscular atrophy and Neuronal Ceroid Lipofuscinosis Type 2 are both rare and devastating neurodegenerative conditions with significant morbidity and mortality. Health Canada and government funding agencies recently approved Nusinersen, Onasemnogene abeparvovec for the treatment of SMA and Cerliponase alfa for the treatment of CLN2, leading us to swiftly integrate these treatments into our standard of care. Conclusions: While implementing these novel therapies into clinical practice can be both challenging and rewarding, neuroscience nurses are positioned at the forefront to be leaders in this process at both organizational, national, and international levels.

The tactics of managing children and adolescents when twisting the uterine appendages from the position of international standards

GYNECOLOGY ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. 39-41
Author(s):  
Zalina K. Batyrova ◽  
Zaira K. Kumykova ◽  
Elena V. Uvarova ◽  
Vladimir D. Chuprynin ◽  
Natalya A. Buralkina ◽  
...  
Keyword(s):  
Children And Adolescents ◽  
Ovarian Tissue ◽  
Standard Of Care ◽  
Lymphatic Drainage ◽  
International Standards ◽  
Delivery Of Care ◽  
National Medical ◽  
Treatment Standard ◽  
Common Causes ◽  
Adolescent Gynecology

Background. Adnexal torsion (AT) takes fifth place among all emergency gynecological conditions. Suspicion of AT requires immediate diagnosis and urgent surgical treatment. The most common causes of AT are various volumetric formations, such as functional or dermoid ovarian cysts, contributing to an increase in its volume and/or anomalies in the development of the ligamentous apparatus. Timely diagnosis and detorsion contributes to the full restoration of impaired venous outflow and lymphatic drainage of the ovarian tissue, preventing the development of severe ischemia and necrosis. Over the past few decades, a surgical organ-preserving approach in managing patients with AT has been the gold standard of care. Materials and methods. The article describes the results of a retrospective study of cases of AT in children and adolescents treated at the Department of Pediatric and adolescent gynecology Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology with an assessment of the clinical and anamnestic features of this cohort of patients and the choice of therapeutic tactics. Conclusion. A multidisciplinary approach is critical to optimizing the delivery of care in cases of AT, including minimally invasive detorsion and preserving the functionality of the ovary as a treatment standard that should be used in the management of children and adolescents.

scholarly journals Socioeconomic Differences in Walking Time of Children and Adolescents to Public Green Spaces in Urban Areas—Results of the German Environmental Survey (2014–2017)

2021 ◽  
Vol 18 (5) ◽  
pp. 2326
Author(s):  
Julia Rehling ◽  
Christiane Bunge ◽  
Julia Waldhauer ◽  
André Conrad
Keyword(s):  
Young People ◽  
Children And Adolescents ◽  
Urban Areas ◽  
Green Space ◽  
Positive Impact ◽  
Green Spaces ◽  
Environmental Survey ◽  
Urban Green Spaces ◽  
Public Green Space ◽  
Walking Time

Public green spaces have a high potential for a positive impact on people’s health and wellbeing, especially in urban areas. Studies on environmental justice indicate socially unequal access possibilities to urban green spaces. This article presents results on associations between individual socioeconomic position (SEP) and walking time from home to public green spaces in young people living in urban areas with more than 20,000 inhabitants in Germany. Data were derived from the German Environmental Survey for Children and Adolescents 2014–2017 (GerES V), the environmental module of the German Health Interview and Examination Survey for Children and Adolescents (KiGGS Wave 2). The sample comprises 1149 participants aged 3 to 17 years. A total of 51.5% of the participants reach a public green space on foot within five and 72.8% within ten minutes from home. The lower the participant’s SEP, the longer the walking time. Logistic regression models controlling for age group, sex, migration background, and region of residence show that participants with a low SEP have a significantly higher risk (odds ratio = 1.98; 95% confidence interval: 1.31–2.99) of needing more than ten minutes to walk from home to a public green space than participants with a high SEP. GerES V data indicate that young people living in urban areas in Germany do not equally benefit from the health-promoting potential of green spaces, which is an important aspect of environmental health inequalities.

scholarly journals Use of Microwave Radiances from Metop-C and Fengyun-3 C/D Satellites for a Northern European Limited-area Data Assimilation System

2021 ◽  
Author(s):  
Magnus Lindskog ◽  
Adam Dybbroe ◽  
Roger Randriamampianina
Keyword(s):  
Data Assimilation ◽  
Positive Impact ◽  
Weather Prediction ◽  
Implementation Process ◽  
Satellite System ◽  
Limited Area ◽  
Global Navigation Satellite ◽  
Microwave Radiances ◽  
Data Assimilation System ◽  
Assimilation System

AbstractMetCoOp is a Nordic collaboration on operational Numerical Weather Prediction based on a common limited-area km-scale ensemble system. The initial states are produced using a 3-dimensional variational data assimilation scheme utilizing a large amount of observations from conventional in-situ measurements, weather radars, global navigation satellite system, advanced scatterometer data and satellite radiances from various satellite platforms. A version of the forecasting system which is aimed for future operations has been prepared for an enhanced assimilation of microwave radiances. This enhanced data assimilation system will use radiances from the Microwave Humidity Sounder, the Advanced Microwave Sounding Unit-A and the Micro-Wave Humidity Sounder-2 instruments on-board the Metop-C and Fengyun-3 C/D polar orbiting satellites. The implementation process includes channel selection, set-up of an adaptive bias correction procedure, and careful monitoring of data usage and quality control of observations. The benefit of the additional microwave observations in terms of data coverage and impact on analyses, as derived using the degree of freedom of signal approach, is demonstrated. A positive impact on forecast quality is shown, and the effect on the precipitation for a case study is examined. Finally, the role of enhanced data assimilation techniques and adaptions towards nowcasting are discussed.

scholarly journals A Multidisciplinary Approach to Implement Personalized Breast Cancer Treatment and Care Plans

2021 ◽  
Vol 28 (1) ◽  
pp. 767-782
Author(s):  
Rashida Haq ◽  
Amy Kong ◽  
Pauline Gulasingam
Keyword(s):  
Breast Cancer ◽  
Primary Care Physicians ◽  
Phase 1 ◽  
Data Entry ◽  
Implementation Process ◽  
Standard Of Care ◽  
Care Team ◽  
Quality Improvement Initiative ◽  
Team Members ◽  
Care Plans

Implementation of survivorship care plans remain a challenge. This quality improvement initiative aims to integrate personalized treatment plans (PTP) and care plans (PCP) into the existing workflow for breast cancer (BC) patients. Methods: Phase 1 was to identify multidisciplinary team members to generate and deliver PTP and PCP. Concurrently, Phase 2 was to deliver PTP and PCP to newly diagnosed invasive BC patients at chemotherapy initiation and completion, respectively. Iterative plan, do, study, act (PDSA) cycles were applied to refine the process. The proportion of information completed for PTP and PCP generation and its delivery by the care team were measured. Patient and provider satisfaction were also assessed. Implementation Process and Results: The care transfer facilitator (CTF) was identified to complete and deliver PTP, and their data entry increased from 0% to 76%, 80%, 92% consecutively during the last 4 PDSA cycles. PTP and PCP were provided to 85% of eligible BC patients. Patients agreed that PTP helped them to actively participate in their care (88%) and communicate with the oncology care team (86%). Primary care physicians agreed that PTP and PCP had the information needed to “stay in the loop” (80%), and oncologists agreed they should be incorporated into oncology clinics (100%). Conclusions: Integrating PTP and PCP generation and delivery into existing workflow has led to an increase in uptake, sustainability and provider buy-in. With limited resources, it remains difficult to find care team members to complete the forms. A dedicated personnel or survivorship clinic is required to successfully implement PTP and PCP as the standard of care.

scholarly journals 179 Evaluating a Clinical Pharmacist Service in a Residential Care Unit

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii1-iii16
Author(s):  
Claire Kavanagh ◽  
Eimear O'Dwyer ◽  
Róisín Purcell ◽  
Niamh McMahon ◽  
Morgan Crowe ◽  
...  
Keyword(s):  
Patient Safety ◽  
Patient Care ◽  
Patient Outcomes ◽  
Residential Care ◽  
Clinical Pharmacist ◽  
Comparative Evaluation ◽  
Positive Impact ◽  
Standard Of Care ◽  
Pharmacist Interventions ◽  
Medication Reviews

Abstract Background This study assessed the pharmacist role in an 80 bed residential care unit by: Quantifying the number and type of pharmacist interventions made and their acceptance rate.Assessing impact of pharmacist interventions on patient care.Assessing staff attitudes towards the clinical pharmacist service. Methods This was a non-blinded, non-comparative evaluation of the existing clinical pharmacist service in the unit. All residents were included. All pharmacist interventions over a 10-week period were recorded, then graded according to the Eadon scale1 by a consultant gerontologist and an experienced pharmacist to assess their impact on patient care. Results There were 615 pharmacist interventions. The most common interventions were: Drug Therapy Review, 34% (n=209) Technical Prescription, 26.5% (n=163) Administration, 15.3% (n=94) Drug Interaction, 10.4% (n=64) Medication Reconciliation, 8.5% (n=52) 98% (n=596) of interventions were rated as having significance to patient care, of which: 48.4% (n=298) and 41.8% (n=257) of the interventions rated as ‘significant and resulting in an improvement in the standard of care’1% (n=6) and 0.5% (n=3) rated as ‘very significant and preventing harm’. There was a statistically significant agreement between the evaluators, κw = 0.231 (95% CI, 0.156 to 0.307), p < .0005. The strength of agreement was fair. Of interventions requiring acceptance by medical team (n=335), 89.9% (n=301) were accepted. 95% (n=36) of staff who responded agreed or strongly agreed that improved patient safety resulted from the pharmacist’s involvement in multidisciplinary medication reviews. Over 92% (n=35) agreed or strongly agreed that their experience of the pharmacist was positive. Conclusion The pharmacist has an important role in our residential care unit. Their involvement in the medicines optimisation process positively impacts patient outcomes and prevents harm. Staff perceived a positive impact of the clinical pharmacist service provided on patient care and patient safety.

scholarly journals Impact of Bolsa Família Program on the nutritional status of children and adolescents from two Brazilian regions

2017 ◽  
Vol 30 (4) ◽  
pp. 477-487 ◽  
Author(s):  
Naiara SPERANDIO ◽  
Cristiana Tristão RODRIGUES ◽  
Sylvia do Carmo Castro FRANCESCHINI ◽  
Silvia Eloiza PRIORE
Keyword(s):  
Nutritional Status ◽  
Children And Adolescents ◽  
Nearest Neighbor ◽  
Positive Impact ◽  
Overweight Children ◽  
Impact Measurement ◽  
Measurement Analysis ◽  
Bolsa Familia ◽  
Nutritional Status Of Children ◽  
The Impact

ABSTRACT Objective: To assess and compare the impact of the Bolsa Família Program (Family Allowance) on the nutritional status of children and adolescents from the Brazilian Northeastern and Southeastern regions. Methods: The study used data from a database derived from a subsample of the Family Budget Survey conducted from 2008 to 2009. The ratios of underweight, stunted, and overweight children were calculated. Impact measurement analysis was preceded by propensity score matching, which matches beneficiary and non-beneficiary families in relation to a set of socioeconomic features. The nearest-neighbor matching algorithm estimated the program impact. Results: The ratio of underweight children and adolescents was, on average, 1.1% smaller in the beneficiary families than in the non-beneficiary families in the Northeastern region. As for the Southeastern region, the ratio of overweight children and adolescents was, on average, 4.2% smaller in the beneficiary families. The program did not affect stunting in either region. Conclusion: The results showed the positive impact and good focus of the program. Thus, once linked to structural actions, the program may help to improve the nutritional status and quality of life of its beneficiaries.

Adult neuronal ceroid lipofuscinosis with clinical findings consistent with a butterfly glioma

1998 ◽  
Vol 88 (2) ◽  
pp. 314-318 ◽  
Author(s):  
Stefanie Hammersen ◽  
Mario Brock ◽  
Jorge Cervós-Navarro
Keyword(s):  
Muscular Atrophy ◽  
Neuronal Ceroid Lipofuscinosis ◽  
Cerebral Atrophy ◽  
Brain Biopsy ◽  
Progressive Dementia ◽  
Ataxic Gait ◽  
Content Type ◽  
Presenting Symptoms ◽  
Ceroid Lipofuscinosis ◽  
Kufs Disease

✓ The authors report a case of neuronal ceroid lipofuscinosis (Kufs' disease) confirmed by stereotactically obtained brain biopsy findings and initially diagnosed as a butterfly glioma. The presenting symptoms in the 64-year-old patient were mental alterations with progressive dementia, followed by muscular atrophy and myoclonia with distal preponderance. The mild initial disturbances of coordination increased, and the patient developed a markedly ataxic gait. Computerized tomography (CT) scanning and magnetic resonance imaging revealed generalized cerebral atrophy and a bifrontal space-occupying lesion involving the callosum. The original “clearcut” diagnosis of glioblastoma multiforme, based on CT scans, was unexpectedly disproved by examination of stereotactically obtained brain biopsy specimens, which revealed a neuronal ceroid lipofuscinosis (Kufs' disease). To the authors' knowledge, this is the first report of a case presenting with both diffuse brain atrophy and localized accumulation of neuronal lipofuscin, mimicking a mass lesion on radiological studies.

scholarly journals Meta-Analysis on Intervention Effects of Physical Activities on Children and Adolescents with Autism

2020 ◽  
Vol 17 (6) ◽  
pp. 1950 ◽  
Author(s):  
Jinfeng Huang ◽  
Chunjie Du ◽  
Jianjin Liu ◽  
Guangxin Tan
Keyword(s):  
Physical Activity ◽  
Children And Adolescents ◽  
Physical Activity Intervention ◽  
Positive Impact ◽  
Meta Analysis ◽  
Physical Activities ◽  
Autistic Children ◽  
China National Knowledge Infrastructure ◽  
Intervention Effects ◽  
Adolescents With Autism

This paper aimed to discuss the intervention effects of physical activities on children and adolescents with autism with a meta-analysis so as to serve as a reference to further relevant research on the same topic. As for research methods, by searching in CNKI (China National Knowledge Infrastructure), WanFang data, VIP Database for Chinese Technical Periodicals, PubMed, Scopus, Web of Science, and other databases, this study collected randomized controlled trials (RCTs) on the intervention of physical activities on children and adolescents with autism and used Review Manager 5.3 software to process and analyze the outcome indicators of the literature. As for the result, a total of 12 papers and 492 research targets were selected. The results of the meta-analysis show that physical activity had a significant positive impact on social interaction ability, communication ability, motor skills, and autism degree of autistic children as well as the social skills and communication skills of autistic adolescents. On the other hand, physical activity had no significant effect on the stereotyped behavior of autistic children and adolescents. In conclusion, physical activity intervention is beneficial to children and adolescents with autism, and continuous physical activity intervention can produce greater intervention effect.

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