European and Australian Cerebral Palsy Surveillance Networks Working Together for Collaborative Research

2020 ◽  
Vol 51 (02) ◽  
pp. 105-112 ◽  
Author(s):  
Elodie Sellier ◽  
Sarah McIntyre ◽  
Hayley Smithers-Sheedy ◽  
Mary Jane Platt ◽  

Abstract Aims This study aims to describe and compare goals and methods, characteristics of children with cerebral palsy (CP), and to compare prevalence of CP in the Surveillance of Cerebral Palsy in Europe (SCPE) and the Australian Cerebral Palsy Register (ACPR). Methods This study compares the objectives of the two networks and their working practices; key documents from both above-mentioned networks were used. Children included in the comparison of the descriptive profile and prevalence measures were born between 1993 and 2009 for Australian data and between 1980 and 2003 for SCPE. Results SCPE contributed 10,756 cases and ACPR 6,803. There were similar distributions of motor type, severity, and gestational age groups, except for the proportion of the lowest gestational age category (range, 20–27 weeks) which was twice higher in the ACPR (13 vs. 7%). Associated impairment proportions were also similar except for severe vision impairment which was more than twice as high in SCPE as in the ACPR (11 vs. 4%), but most likely due to a subtle difference in definitions. Prevalence rates were comparable at the same time point in the different groups of birth weight, and declined over time, except for the moderately low birth weight in ACPR. Conclusion Two CP networks representing two continents have compared their major characteristics to facilitate the comparison across their study populations. These characteristics proved to be similar with only marginal differences. This gives additional strength to the observation in both networks that CP prevalence is decreasing which is of great importance for families and health care systems.

2020 ◽  
Vol 51 (02) ◽  
pp. 120-128 ◽  
Author(s):  
Veronka Horber ◽  
Asma Fares ◽  
Mary Jane Platt ◽  
Catherine Arnaud ◽  
Ingeborg Krägeloh-Mann ◽  
...  

Abstract Objective This article describes associated impairments in children with cerebral palsy (CP) and its subtypes. Method Children born between 1990 and 2006 recorded in the Surveillance of Cerebral Palsy in Europe common database were studied. An “impairment index” characterized severity of impairments and their combinations. Results Amongst the 11,015 children analyzed, 56% (n = 5,968) could walk unaided, 54% (4,972) had normal or near-normal intellect (intelligence quotient ≥ 70). Except for ataxic CP, associated impairments were less frequent when walking ability was preserved. The impairment index was low (walking unaided and normal or near-normal intellect) in 30% of cases; 54% (n = 1,637) in unilateral spastic, 24% (n = 79) in ataxic, 18% (n = 913) in bilateral spastic, and 7% (n = 50) in dyskinetic CP. Around 40% had a high impairment index (inability to walk and/or severe intellectual impairment ± additional impairments)—highest in dyskinetic (77%, n = 549) and bilateral spastic CP (54%, n = 2,680). The impairment index varied little in birth weight and gestational age groups. However, significantly fewer cases in the birth weight group ≤ 1,000 g or gestational age group ≤ 27 weeks had a low impairment index compared to the other birth weight and gestational age groups (23 and 24% vs. between 27 and 32%). Conclusion Thirty percent of the children with CP had a low impairment index (they were able to walk unaided and had a normal or near-normal intellect). Severity in CP was strongly associated to subtype, whereas the association was weak with birth weight or gestational age.


2021 ◽  
Vol 29 (1) ◽  
pp. 230949902110011
Author(s):  
Kyoko Okuno ◽  
Yukihiro Kitai ◽  
Toru Shibata ◽  
Hiroshi Arai

Purpose: To investigate the risk factors for hip displacement in patients with dyskinetic cerebral palsy (DCP). Methods: We evaluated 81 patients with DCP, 45 males and 36 females, aged 10–22 years, risk factors for hip displacement were evaluated using multivariate logistic regression analysis with primary brain lesions, Gross Motor Function Classification System (GMFCS) level, gestational age, birth weight, Cobb’s angle, and complication of epilepsy as independent factors. Hip displacement was defined as migration percentage >30%. Primary brain lesions were classified into globus pallidus (GP), thalamus and putamen (TP), and others using brain magnetic resonance imaging (MRI). Perinatal and clinical features were compared between patients with GP lesions and those with TP lesions. Results: Hip displacement was observed in 53 patients (67%). Higher GMFCS levels (p = 0.013, odds ratio [OR] 2.6) and the presence of GP lesions (p = 0.04, OR 16.5) were independent risk factors for hip displacement. Patients with GP lesions showed significantly higher GMFCS levels, more frequent hip displacement, and lower gestational age and birth weight than those with TP lesions. Conclusion: Primary brain lesion location may be an important factor in predicting hip displacement among patients with DCP. Appropriate risk assessment using brain MRI may contribute to the early detection and intervention of hip displacement because brain lesion location can be assessed during infancy before GMFCS level is decided.


PEDIATRICS ◽  
1981 ◽  
Vol 68 (1) ◽  
pp. 122-130
Author(s):  
Alistair G. S. Philip ◽  
George A. Little ◽  
Denise R. Polivy ◽  
Jerold F. Lucey

Since 1976 a computerized data base has been used to store information on babies admitted to two intensive care nurseries serving the Vermont/New Hampshire region. The data base now allows reporting "neonatal" mortality by birth weight/gestational age (BW/GA) groupings for 1976-1979. For all BW/GA groups, except the most immature infants, there has been marked improvement compared to data gathered in the sixties (ie, mortality has decreased). These data are probably applicable to most other centers providing neonatal intensive care. The use of BW/GA categories provides the most reliable way of objectively comparing statistics from one center to another. Differences between two centers were observed when birth weight specific rates were used, but were largely abolished by using BW/GA groups. Data gathered in this way will be increasingly important for comparisons between centers and across years and when evaluating the effectiveness of new therapeutic interventions.


Author(s):  
Rosi Wang ◽  
Charlotte Helf ◽  
Linda Tizek ◽  
Ruth Neuhauser ◽  
Kilian Eyerich ◽  
...  

The pandemic outbreak of coronavirus disease 2019 (COVID-19) affects health care systems globally and leads to other challenges besides infection and its direct medical consequences. The aim of this study was to investigate the impact of SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2) pandemic on the university dermatology outpatient clinic (UDOC) of the Technical University of Munich, Germany. We analyzed datasets from 2015 until 2020 extracted from the hospital information system database and our documented outpatient files regarding patient numbers, gender, age, and diagnoses. In 2020, case numbers of outpatient care declined significantly (p = 0.021) compared to previous years and was related to the timing of political announcements answering SARS-CoV-2 pandemic. Additionally, during calendar week 10 to 15—the peak time of the spread of COVID-19 in Germany—the proportion of patients missing their consultation was significantly higher in 2020 than in 2019 (22.4% vs. 12.4%; p < 0.001). Gender-associated differences regarding absences were not detected, but patients aged 85 years or older were significantly more likely to miss their consultation compared to all other age groups (p = 0.002). Regarding different disease clusters, patients with chronic inflammatory skin diseases and infectious and malignant diseases were more likely to miss their consultation (p = 0.006). Noticeably, less patients with malignant diseases, and particularly malignant melanoma, were registered during this pandemic. Our data support the hypothesis that medically constructive prioritization might not be implemented properly by patients themselves. Identifying missed patients and catching up on their medical care apart from COVID-19 will pose an enormous challenge for health care systems globally.


2015 ◽  
Vol 2015 ◽  
pp. 1-5 ◽  
Author(s):  
Berna Akova-Budak ◽  
Sertaç Argun Kıvanç ◽  
Osman Okan Olcaysü

Purpose. To investigate the association of birth parameters with refractive status in different age groups of Caucasian children.Materials and Methods. This cross-sectional study included 564 eyes of 282 children aged 4 to 17 years. All children underwent complete ophthalmologic examination. The children were divided into three groups according to their refractive status (emmetropia,myopia, and hyperopia), ages (4–7, 8-9, 10–12, and 13–17), and appropriateness for gestational age, respectively.Results. The mean age of the children was9.2±2.8(age range 4–17 years). The mean spheric equivalent was+0.3±1.7(range: (−10.0)–(+10.0) diopters). The mean birth weight and gestational age were2681.1±930.8grams (750–5000 grams) and37.2±3.7weeks (25–42 weeks). According to multinominal logistic regression analysis, children with myopia were more likely to have higher birth weights than emmetropic children (OR: 1.0, 95% CI: 1.000–1.001, andP=0.028). The hypermetropes were found to be significantly small for gestational age between 13 and 17 years of age.Conclusion. Birth weight and appropriateness for gestational age as birth parameters may have an impact on development of all types of refractive errors. The hypermetropic children tended to be small for gestational age.


2020 ◽  
Vol 25 (Supplement_2) ◽  
pp. e10-e10
Author(s):  
Maad Saleem ◽  
Lamia Hayawi ◽  
Nick Barrowman ◽  
Nadya BenFadel ◽  
Jana Feberova ◽  
...  

Abstract Background Lower gestational age or birth weight and higher rate of neurodevelopmental impairment have been commonly linked to higher need for developmental resources in premature infants. Existing evidence on need for developmental support in premature infants is limited in description of the needs, timing and method of assessment. Objectives To identify predictors for the needs for developmental resources among high-risk groups of infants born less than 29 weeks or with a birth weight (BW) less than 1250 grams. Secondarily, to compare the need of referrals to developmental resources and the rate of neurodevelopmental impairment defined as cerebral palsy, global developmental delay, blindness and deafness for this high risk population. Design/Methods We conducted a retrospective chart review of premature infants &lt; 29+0 weeks GA or BW &lt; 1250 grams born between January 2005 and December 31st 2014, who had at least one visit at the neonatal follow up clinic. Univariate and multivariate logistic regression analyses were conducted to examine potential predictors for referral to developmental resources. Results The study included 687 infants. Within this high risk population, 579 (85.0%) of infants were referred, of these 153 (26.4%) had one referral, 132 (22.8%) had 2 and 294 (50.8%) had 3 or more referral/s to developmental resources. Most frequent referrals were for speech therapy (339, 50.0%) physiotherapy (319, 46.8%) occupational therapy (262, 38.3%) and infant development program (232, 34.1%). The rates of referral to developmental resources decrease with increasing gestational age. Multivariate logistic regressions showed that gestational age (OR: 1.19, 95% CI: 1.05 - 1.35), birth weight (OR: 0.87, 95% CI: 0.77 - 0.99), female gender (OR: 0.70, 95% CI: 0.49 - 0.99), intraventricular hemorrhage grades III-IV (OR: 3.02, 95% CI: 1.28 - 7.16), and days on mechanical ventilator (OR:1.03, 95% CI: 1.01 - 1.05) were predictors for 2 or more referrals to developmental resources. Cerebral palsy was present in 4.4 % of the study population, deafness in 4% and blindness in 0.6%. The rate of referral to developmental resources was 54 (98.2%) among infants with neurodevelopmental impairment (NDI) compared to 522 (83.9%) in infants without NDI (p value= 0.01). Conclusion There is substantial need for developmental support among high-risk premature infants. Infants without neurodevelopmental impairments still need significant developmental resources to achieve their outcome.


2020 ◽  
Author(s):  
Mark D. Verhagen ◽  
David M. Brazel ◽  
Jennifer Beam Dowd ◽  
Ilya Kashnitsky ◽  
Melinda Mills

COVID-19 poses one of the most profound public health crises for a hundred years. As of late March 2020, over 25,000 deaths and above a half million confirmed cases were registered across more than 175 countries or regions. The virus will infect a sizeable proportion of the worlds population, leading to unprecedented pressures on national health care systems. Although national estimates of hospital bed capacity are available, these obscure important differences at local and regional levels. COVID-19 appears especially dangerous for the oldest age groups and those with serious comorbidities. It is crucial to understand how health system capacity matches local variations in population structure. Using England and Wales, we illustrate how the interaction of local demography, a high burden of COVID-19 hospitalization at older ages, and regional variation in hospital resources may culminate in "hospital deserts" with too few resources to cope with a wave of critical cases. We demonstrate how local capacity could rapidly become overwhelmed. By providing fine-grained local estimates of expected hospitalization, we identify areas that have higher risks of health care burden. An online companion to this paper can be used by policymakers to identify and monitor high-risk areas, and predict the expected healthcare demand in real-time as the actual epidemic spreads. This agile knowledge will be invaluable to tackle the enormous logistical challenge COVID-19 will pose to health care systems.


Author(s):  
Kiran Fatima ◽  
Rabeea Irfan ◽  
Laraib Azmat

Background: Haemophilia; classified by the inefficacy of blood to clot appropriately, is a genetic bleeding disorder. As a developing country, Pakistan has limited health resources and very little awareness of hemophilia among its people. Objectives: This research study is designed to identify the prevalence of the disease and to report the types of haemophilia common in Pakistan in order to propose suitable treatments for the prevention and cure of the disease. Methodology: A survey questionnaire was designed and executed by the group members. Data was collected from registered Haemophilia Centers in Pakistan. Number of reported cases based on types of haemophilia, age groups, and gender were identified separately. Results: It was evaluated that Pakistan continues to have a growing number of hemophilia cases at an alarming rate. The research study also showed how there is a lack of affordable and proper health care in the country, due to which several cases go unreported and untreated. Conclusion: For the containment of this bleeding disorder, time for taking proper action is passing. Proper health care systems should be set up which are accessible to the majority of the population. Awareness programs should be designed and people should be encouraged for regular laboratory tests to prevent late diagnosis.


2021 ◽  
Vol 9 ◽  
Author(s):  
Licia Lugli ◽  
Luca Bedetti ◽  
Isotta Guidotti ◽  
Marisa Pugliese ◽  
Odoardo Picciolini ◽  
...  

Background: Despite the increased survival of preterm newborns worldwide, the risk of neurodevelopmental disabilities remains high. Analyzing the outcomes of the preterm population can identify risk factors and enable specific early interventions.Aims: Neuroprem is a prospective cohort study of very low birth weight (VLBW) infants that aims to evaluate the neurodevelopmental outcomes and risk factors for severe functional disability at 2 years of corrected age.Methods: Nine Italian neonatal intensive care units participated in the network. The Griffiths Mental Developmental Scales (GMDS-R) or the Bayley Scales of Infant and Toddler Development (BSDI III) and a neuro-functional evaluation (according to the International Classification of Disability and Health and Neuro-Functional Assessment, or NFA ICF-CY) were administered to VLBW infants at 24 months of corrected age. The primary outcome measure was severe functional disability, defined as cerebral palsy, bilateral blindness, deafness, an NFA ICF-CY of &gt;2, a BSDI III cognitive composite score of &lt;2 SD, or a GMDS-R global quotient score of &lt;2 SD. Perinatal risk factors for severe functional disability were assessed through multivariate logistic regression analysis.Results: Among 502 VLBW survivors who completed the 24-month follow-up, 48 (9.6%) presented severe functional disability, of whom 27 had cerebral palsy (5.4%). Rates of severe functional disability and cerebral palsy were higher in neonates with a lower gestational age (p &lt; 0.001). Overall, 147 infants (29.3%) were referred to neuromotor intervention. In the multivariate regression model, gestational age at birth OR 0.79; 95% CI 0.67–0.90; p = 0.001) and periventricular-intraventricular hemorrhage (OR 2.51; 95% CI 1.19–5.26; p = 0.015) were significantly associated with severe functional disability.Conclusion: Neuroprem 2 provides updated information on the neurodevelopmental outcomes of VLBW infants in a large Italian cohort. The overall rate of neurodevelopmental disabilities was quite lower than reported in the previous literature. These data indicate the need for structured follow-up programs from a national neonatal network perspective.


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