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1.
Arch Dis Child ; 109(2): 106-112, 2024 01 22.
Artigo em Inglês | MEDLINE | ID: mdl-37875332

RESUMO

OBJECTIVES: To determine the baseline trends in the total birth prevalence of neural tube defects (NTDs) in England (2000-2019) to enable the impact of folic acid fortification of non-wholemeal wheat flour to be monitored. DESIGN: Population-based, observational study using congenital anomaly (CA) registration data for England curated by the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). SETTING: Regions of England with active registration in the time period. PARTICIPANTS: Babies that were liveborn or stillborn and pregnancies that resulted in a termination of pregnancy or a late miscarriage (20-23 weeks' gestation) with an NTD. MAIN OUTCOME MEASURES: Total birth prevalence of anencephaly, spina bifida and all NTDs in England. Poisson regression analysis was used to evaluate time trends with regional register as a random effect. The progress of national registration across England was assessed. RESULTS: There were 4541 NTD pregnancies out of 3 637 842 births in England; 1982 anencephaly and 2127 spina bifida. NTD prevalence was 12.5 (95% CI 12.1 to 12.9) per 10 000 total births. NTD prevalence per 10 000 total births was significantly higher in 2015-2019 (13.6, 95% CI 12.9 to 14.4) compared with 2010-2014 (12.1, 95% CI 11.7 to 12.5). An increasing trend in NTDs overall was detected (incidence rate ratio (IRR) 1.01, 1.00 to 1.02), although further analysis determined this effect was confined to 2015-2019 (compared against 2000-2004, IRR 1.14, 1.04 to 1.24). The birth prevalence of anencephaly reflected this pattern. The prevalence of spina bifida remained relatively stable over time. CONCLUSIONS: Baseline NTD prevalence for England has been established. National and standardised CA registration is in place, facilitating the systematic and consistent monitoring of pre-fortification and post-fortification NTD trends and evaluating the impact of fortification on NTD prevalence.


Assuntos
Anencefalia , Defeitos do Tubo Neural , Disrafismo Espinal , Gravidez , Feminino , Humanos , Ácido Fólico , Farinha , Prevalência , Anencefalia/epidemiologia , Anencefalia/prevenção & controle , Estudos de Coortes , Triticum , Alimentos Fortificados , Defeitos do Tubo Neural/epidemiologia , Defeitos do Tubo Neural/prevenção & controle , Disrafismo Espinal/epidemiologia , Disrafismo Espinal/prevenção & controle
2.
BMJ Open ; 13(10): e070366, 2023 10 05.
Artigo em Inglês | MEDLINE | ID: mdl-37798026

RESUMO

OBJECTIVES: To identify, synthesise and appraise evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and pregnancy. DESIGN: Mixed-methods systematic review, using convergent segregated design. DATA SOURCES: MEDLINE, EMBASE, Scopus, PsycINFO, CINAHL, MedRxiv, PROSPERO and grey literature sources through 6 August 2023. ELIGIBILITY CRITERIA: We included original research studies, expert opinion and grey literature reporting on ME/CFS and pregnancy/post partum (up to 2 years), risk of pregnancy outcomes with ME/CFS or experiences during pregnancy for mother, partner or health and social care professionals following ME/CFS during pregnancy, all where the evidence was relevant to a confirmed ME/CFS diagnosis prior to pregnancy. DATA EXTRACTION AND SYNTHESIS: Three independent reviewers completed all screening, data extraction and quality assessment. Risk of bias was assessed using the mixed-methods appraisal tool V.2018. Qualitative and quantitative literature was analysed separately using thematic and descriptive syntheses. Findings were integrated through configuration. RESULTS: Searches identified 3675 articles, 16 met the inclusion criteria: 4 quantitative (1 grey), 11 qualitative (9 grey) and 1 grey mixed-methods study. Of the four quantitative studies that reported on ME/CFS severity during pregnancy, two suggested pregnancy negatively impacted on ME/CFS, one found most women had no change in ME/CFS symptoms and one found ME/CFS improved; this difference in symptom severity across studies was supported by the qualitative evidence. The qualitative literature also highlighted the importance of individualised care throughout pregnancy and birth, and the need for additional support during family planning, pregnancy and with childcare. Only one quantitative study reported on pregnancy outcomes, finding decreased vaginal births and higher rates of spontaneous abortions and developmental and learning delays associated with pregnancies in those with ME/CFS. CONCLUSIONS: Current evidence on ME/CFS in pregnancy is limited and findings inconclusive. More high-quality research is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.


Assuntos
Síndrome de Fadiga Crônica , Humanos , Feminino , Gravidez , Síndrome de Fadiga Crônica/diagnóstico , Mães
3.
Nutrients ; 15(20)2023 Oct 18.
Artigo em Inglês | MEDLINE | ID: mdl-37892490

RESUMO

Preconception bariatric surgery improves obesity-related maternal pregnancy complications but may reduce the absorption of nutrients required for healthy fetal growth and development. Women who receive preconception nutritional support after bariatric surgery are less likely to have adverse pregnancy outcomes. This study aimed to investigate the provision of preconception and pregnancy-specific nutritional support for women having bariatric surgery in the UK. A mixed-methods survey was distributed to healthcare professionals working in obesity or maternity services between December 2018 and October 2019. We collected both quantitative and qualitative data which were analysed using a mixed-methods approach. We received 135 responses from online (n = 99) and postal (n = 36) questionnaires. Only 45% of participants reported being 'very familiar' with the preconception/pregnancy nutritional needs of this population. Barriers to providing nutritional support included: a lack of resources and time; poor communication both across services and with women; not having contact with women preconception; and a lack of information and guidance. Respondents felt that dietitians have the expertise in nutrition necessary to provide support; however, GPs and midwives have the most frequent patient access post-surgery, both before and during pregnancy. Optimal preconception and pregnancy-related nutritional support requires multidisciplinary care pre- and post-surgery, and healthcare professionals require training and guidance to inform practice.


Assuntos
Cirurgia Bariátrica , Fenômenos Fisiológicos da Nutrição Pré-Natal , Gravidez , Humanos , Feminino , Cuidado Pré-Concepcional/métodos , Obesidade , Inquéritos e Questionários , Apoio Nutricional , Reino Unido , Atenção à Saúde
4.
Nutrients ; 15(17)2023 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-37686838

RESUMO

Preconception obesity is associated with adverse pregnancy outcomes and deprivation. The postnatal period provides an opportunity for preconception intervention. There is a lack of published postnatal behaviour and weight data to inform intervention needs. Secondary analysis of the GLOWING study explored postnatal diet, physical activity (PA) and weight among women living with obesity in deprivation. Thirty-nine women completed food frequency and PA questionnaires and provided weight measurement(s) between 3-12 months postnatal. Women's diet and PA fell short of national guidelines, especially for fruit/vegetables (median 1.6-2.0 portions/day) and oily fish (0-4 g/day). PA was predominantly light intensity. Patterns in weight change across time points indicated postnatal weight loss compared with 1st (median -0.8 to -2.3 kg) and 3rd-trimester weights (-9.0 to -11.6 kg). Weight loss was higher among women without excessive gestational weight gain (GWG) (-2.7 to -9.7 kg) than those with excessive GWG (2.3 to -1.8 kg), resulting in postnatal weight measurements lower than their 1st trimester. These pilot data suggest preconception interventions should commence in pregnancy with a focus on GWG, and postnatal women need early support to achieve guideline-recommendations for diet and PA. Further research in a larger population could inform preconception intervention strategies to tackle inequalities in maternal obesity and subsequent pregnancy outcomes.


Assuntos
Doenças do Recém-Nascido , Obesidade Materna , Animais , Feminino , Humanos , Gravidez , Dieta , Exercício Físico , Frutas , Obesidade/epidemiologia , Projetos Piloto , Reino Unido
5.
J Hematol Oncol ; 16(1): 56, 2023 05 26.
Artigo em Inglês | MEDLINE | ID: mdl-37237311

RESUMO

Haemophagocytic lymphohistiocytosis (HLH) is a lethal syndrome of excessive immune activation. We undertook a nationwide study in England of all cases of HLH diagnosed between 2003 and 2018, using linked electronic health data from hospital admissions and death certification. We modelled interactions between demographics and comorbidities and estimated one-year survival by calendar year, age group, gender and comorbidity (haematological malignancy, auto-immune, other malignancy) using Cox regression. There were 1628 people with HLH identified. Overall, crude one-year survival was 50% (95% Confidence interval 48-53%) which varied substantially with age (0-4: 61%; 5-14: 76%; 15-54: 61%; > 55: 24% p < 0.01), sex (males, 46%, worse than females, 55% p < 0.01) and associated comorbidity (auto-immune, 69%, haematological malignancy 28%, any other malignancy, 37% p < 0.01). Those aged < 54 years had a threefold increased risk of death at 1-year amongst HLH associated with malignancy compared to auto-immune. However, predicted 1-year survival decreased markedly with age in those with auto-immune (age 0-14, 84%; 15-54, 73%; > 55, 27%) such that among those > 55 years, survival was as poor as for patients with haematological malignancy. One-year survival following a diagnosis of HLH varies considerably by age, gender and associated comorbidity. Survival was better in those with auto-immune diseases among the young and middle age groups compared to those with an underlying malignancy, whereas in older age groups survival was uniformly poor regardless of the underlying disease process.


Assuntos
Neoplasias Hematológicas , Linfo-Histiocitose Hemofagocítica , Neoplasias , Masculino , Pessoa de Meia-Idade , Feminino , Humanos , Idoso , Linfo-Histiocitose Hemofagocítica/epidemiologia , Linfo-Histiocitose Hemofagocítica/diagnóstico , Estudos de Coortes , Estudos Retrospectivos , Neoplasias/complicações , Neoplasias Hematológicas/complicações , Neoplasias Hematológicas/epidemiologia
6.
J Eur Acad Dermatol Venereol ; 37(3): 581-589, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36300660

RESUMO

BACKGROUND: Aplasia cutis congenita (ACC) is a rare congenital anomaly characterized by localized or widespread absence of skin at birth, mainly affecting the scalp. Most information about ACC exists as individual case reports and medium-sized studies. OBJECTIVES: This study aimed to investigate the epidemiology of ACC, using data from a large European network of population-based registries for congenital anomalies (EUROCAT). METHODS: Twenty-eight EUROCAT population-based registries in 16 European countries were involved. Poisson regression models were exploited to estimate the overall and live birth prevalence, to test time trends in prevalence between four 5-year periods and to evaluate the impact of the change of coding for ACC from the unspecific ICD9-BPA code to the specific ICD10 code. Proportions of ACC cases associated with other anomalies were reported. RESULTS: Five hundred cases were identified in the period 1998-2017 (prevalence: 5.10 per 100,000 births). Prevalence across 5-year periods did not differ significantly and no significant differences were evident due to the change from ICD9 to ICD10 in ACC coding. Heterogeneity in prevalence was observed across registries. The scalp was the most common site for ACC (96.4%) and associated congenital anomalies were present in 33.8% of cases. Patau and Adams-Oliver syndromes were the most frequent among the associated chromosomal anomalies (88.3%) and the associated genetic syndromes (57.7%), respectively. 16% of cases were associated with limb anomalies and 15.4% with congenital heart defects. A family history of ACC was found in 2% of cases. CONCLUSION: To our knowledge, this is the only population-based study on ACC. The EUROCAT methodologies provide reliable prevalence estimates and proportions of associated anomalies.


Assuntos
Displasia Ectodérmica , Deformidades Congênitas dos Membros , Dermatoses do Couro Cabeludo , Recém-Nascido , Humanos , Displasia Ectodérmica/epidemiologia , Displasia Ectodérmica/genética , Europa (Continente)/epidemiologia , Pele
7.
BJOG ; 130(1): 51-58, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36054171

RESUMO

OBJECTIVE: To measure condition-specific detection rates for 14 physical conditions screened for by the NHS fetal anomaly screening programme (FASP) fetal anomaly (FA) ultrasound scan. DESIGN: Retrospective audit of 12 694 diagnoses across a 3-year national cohort. SETTING: All English NHS and crown-dependency hospital trusts providing maternity services. POPULATION: Pregnancies booked for maternity services with an expected date of delivery between 1 April 2017 and 31 March 2020 and at least one diagnosis of a condition screened for by FASP. METHODS: Active multi-source ascertainment, linkage, audit and validation of clinical information to identify the subset of diagnoses meeting the condition-specific positivity threshold for the FA scan. MAIN OUTCOME MEASURE: The accuracy of the FA scan compared with diagnostic reference standards. RESULTS: FA scan detection rates were: anencephaly 96.3% (95% confidence interval [CI] 81.7-99.3%), atrioventricular septal defect: 69.2% (95% CI 65.8-72.4%), bilateral renal agenesis: 98.7% (95% CI 95.4-99.6%), cleft lip: 89.5% (95% CI 87.8-90.9%), congenital diaphragmatic hernia: 60.8% (95% CI 56.5-65%), Edwards syndrome: 73.8% (95% CI 67.5-79.3%), exomphalos: 59.4% (95% CI 49.4-68.7%), gastroschisis: 88.6% (95% CI 79-94.1%), hypoplastic left heart syndrome: 92.7% (95% CI 90-94.8%), lethal skeletal dysplasia: 93.2% (95% CI 88.6-96%), Patau syndrome: 82.3% (95% CI 72.4-89.1%), spina bifida: 93.8% (95% CI 91.8-95.3%), tetralogy of Fallot: 75.4% (95% CI 72.1-78.4%) and transposition of the great arteries: 84.9% (95% CI 81.7-87.5%). CONCLUSIONS: The performance of the FA scan is above the expectations set in 2010 for most conditions. For the remaining conditions, the majority of fetuses and babies affected are detected before the FA scan.


Assuntos
Medicina Estatal , Transposição dos Grandes Vasos , Feminino , Gravidez , Humanos , Estudos de Coortes , Estudos Retrospectivos , Diagnóstico Pré-Natal , Ultrassonografia Pré-Natal
8.
Hemasphere ; 6(11): e797, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36340911

RESUMO

Hemophagocytic lymphohistiocytosis (HLH) is rare, results in high mortality, and is increasingly being diagnosed. We aimed to quantify the incidence of diagnosed HLH and examine temporal trends in relation to age and associated diseases. Using national linked electronic health data from hospital admissions and death certification cases of HLH that were diagnosed in England between January 1, 2003, and December 31, 2018. We calculated incidence rates of diagnosed HLH per million population by calendar year, age group, sex, and associated comorbidity (hematological malignancy, inflammatory rheumatological or bowel diseases [IBD]). We modeled trends in incidence and the interactions between calendar year, age, and associated comorbidity using Poisson regression. There were 1674 people with HLH diagnosed in England between 2003 and 2018. The incidence rate quadrupled (incidence rate ratio [IRR] 2018 compared to 2003: 3.88, 95% confidence interval [CI] 2.91 to 5.28), increasing 11% annually (adjusted IRR 1.11, 95% CI 1.09 to 1.12). There was a transition across age groups with greater increases in those aged 5-14 years of HLH associated with rheumatological disease/IBD compared with hematological malignancy, with similar increases in HLH associated with both comorbidities for those 15-54, and greater increases in HLH associated with hematological malignancies for those 55 years and older. The incidence of HLH in England has quadrupled between 2003 and 2018. Substantial variation in the incidence occurred with inflammatory rheumatological diseases/IBD-associated HLH increasing more among the younger age groups, whereas in older age groups, the largest increase was seen with hematological malignancy-associated HLH.

9.
BMC Pediatr ; 22(1): 657, 2022 11 12.
Artigo em Inglês | MEDLINE | ID: mdl-36368959

RESUMO

BACKGROUND: Parents of children who have a congenital anomaly can experience significant worry about their child's health. Access to clear, helpful, and trustworthy information can provide a valuable source of support. In this study the aim was to explore the information needs of parents/carers of children with congenital anomalies across Europe. METHOD: A cross-sectional online survey was developed in nine languages to measure parents' information needs, including: (1) the 'helpfulness'/'trustworthiness' of information received from eight relevant sources, and (2) overall satisfaction with information received. Parents/carers of children (0-10 years) with cleft lip, spina bifida, congenital heart defect [CHD] requiring surgery, and/or Down syndrome were recruited online via relevant organisations in 10 European countries from March-July 2021. Quantitative analyses using multivariable logistic regressions were performed. RESULTS: One thousand seventy parents/carers of children with a cleft lip (n = 247), spina bifida (n = 118), CHD (n = 366), Down syndrome (n = 281), and Down syndrome with CHD (n = 58) were recruited in Poland (n = 476), the UK (n = 120), Germany (n = 97), the Netherlands/Belgium (n = 74), Croatia (n = 68), Italy (n = 59), other European countries (n = 92), and not specified/non-European countries (n = 84). Most participants were mothers (92%) and aged 31-40 years (71%). Participants were most likely to rate support groups (63%), patient organisations (60%), specialist doctors/nurses (58%), and social media (57%) as 'very helpful' information sources. 'Very trustworthy' ratings remained high for specialist doctors/nurses (61%), however, they declined for support groups (47%), patient organisations (48%), and social media (35%). Germany had the highest proportion of participants who were 'very satisfied' (44%, 95% CI = 34%-54%) with information, whereas this percentage was lowest in Croatia (11%, 95% CI = 3%-19%) and Poland (15%, 95% CI = 11%-18%). Parents of children with Down syndrome had significantly lower satisfaction ratings than parents of children with CHD; 13% (95% CI = 8%-18%) reported being 'very satisfied' compared to 28% (95% CI = 23%-33%) in the CHD group. CONCLUSIONS: Findings suggest that informal sources of information (e.g. support groups) are of value to parents, however, they are not deemed as trustworthy as specialist medical sources. Satisfaction ratings differed across countries and by anomaly, and were particularly low in Croatia and Poland, as well as for parents of children with Down syndrome, which warrants further investigation.


Assuntos
Fenda Labial , Síndrome de Down , Cardiopatias Congênitas , Disrafismo Espinal , Criança , Humanos , Estudos Transversais , Pais
10.
Br J Haematol ; 199(5): 728-738, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36122574

RESUMO

This analysis is the largest population-based study to date to provide contemporary and comprehensive epidemiological estimates of all third edition of the International Classification of Diseases for Oncology (ICD-O-3) coded Langerhans cell histiocytosis (LCH) from England. People of all ages were identified from the National Cancer Registration Dataset using ICD-O-3 morphologies 9751-9754 for neoplasms diagnosed in 2013-2019. A total of 658 patients were identified, of whom 324 (49%) were children aged <15 years. The age-standardised incidence rate was 4.46 (95% confidence interval [CI] 3.99-4.98) per million children and 1.06 (95% CI 0.94-1.18) per million adults aged ≥15 years. Prevalence of LCH was 9.95 (95% CI 9.14-10.81) per million persons at the end of 2019. The 1-year overall survival (OS) was 99% (95% CI 97%-100%) for children and 90% (95% CI 87%-93%) for adults. Those aged ≥60 years had poorer OS than those aged <15 years (hazard ratio [HR] 22.12, 95% CI 7.10-68.94; p < 0.001). People in deprived areas had lower OS than those in the least deprived areas (HR 5.36, 95% CI 1.16-24.87; p = 0.03). There will inevitably be other environmental factors and associations yet to be identified, and the continued standardised data collection will allow further evaluation of data over time. This will be increasingly important with developments in LCH management following the large collaborative international trials such as LCH IV.


Assuntos
Histiocitose de Células de Langerhans , Neoplasias , Criança , Adulto , Humanos , Incidência , Prevalência , Histiocitose de Células de Langerhans/epidemiologia , Histiocitose de Células de Langerhans/terapia , Sistema de Registros , Neoplasias/epidemiologia
11.
Arch Dis Child Fetal Neonatal Ed ; 107(1): 13-19, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34183433

RESUMO

OBJECTIVES: To assess the minimum incidence of life-threatening bronchopulmonary dysplasia (BPD), defined as need for positive pressure respiratory support or pulmonary vasodilators at 38 weeks corrected gestational age (CGA), in infants born <32 weeks gestation in the UK and Ireland; and to describe patient characteristics, management and outcomes to 1 year. METHODS: Prospective national surveillance study performed via the British Paediatric Surveillance Unit from June 2017 to July 2018. Data were collected in a series of three questionnaires from notification to 1 year of age. RESULTS: 153 notifications met the case definition, giving a minimum incidence of 13.9 (95% CI: 11.8 to 16.3) per 1000 live births <32 weeks' gestation. Median gestation was 26.1 (IQR 24.6-28) weeks, and birth weight 730 g (IQR 620-910 g). More affected infants were male (95 of 153, 62%; p<0.05). Detailed management and outcome data were provided for 94 infants. Fifteen died at median age 159 days (IQR 105-182) or 49.6 weeks CGA (IQR 43-53). Median age last receiving invasive ventilation was 50 days (IQR 22-98) and total duration of pressure support for surviving infants 103 (IQR 87-134) days. Fifty-seven (60.6%) received postnatal steroids and 22 (23.4%) pulmonary vasodilators. Death (16%) and/or major neurodevelopmental impairment (37.3%) or long-term ventilation (23.4%) were significantly associated with need for invasive ventilation near term and pulmonary hypertension. CONCLUSIONS: This definition of life-threatening BPD identified an extremely high-risk subgroup, associated with serious morbidity and mortality. Wide variability in management was demonstrated, and future prospective study, particularly in key areas of postnatal steroid use and pulmonary hypertension management, is required.


Assuntos
Displasia Broncopulmonar/epidemiologia , Displasia Broncopulmonar/complicações , Displasia Broncopulmonar/terapia , Permeabilidade do Canal Arterial/complicações , Permeabilidade do Canal Arterial/terapia , Feminino , Idade Gestacional , Glucocorticoides/uso terapêutico , Humanos , Hipertensão Pulmonar/complicações , Hipertensão Pulmonar/tratamento farmacológico , Incidência , Recém-Nascido , Infecções/complicações , Infecções/tratamento farmacológico , Irlanda/epidemiologia , Masculino , Vigilância da População , Respiração com Pressão Positiva , Estudos Prospectivos , Resultado do Tratamento , Reino Unido/epidemiologia , Vasodilatadores/uso terapêutico
12.
J Intern Med ; 291(4): 493-504, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34875131

RESUMO

BACKGROUND: Haemophagocytic lymphohistiocytosis (HLH) is a rare hyper-inflammatory condition with poor outcomes. OBJECTIVES: Few population-based estimates of the incidence and survival in adults exist. We aimed to provide these data for England. METHODS: We used population-based linked data from primary care, secondary care, cancer registries and mortality databases in England to identify people diagnosed with HLH between 1 January 2000 and 31 December 2016. We calculated annual incidence rates by age and sex, modelled change in incidence over time with Poisson regression, calculated overall 1-year survival using Kaplan-Meier methods and estimated adjusted hazard ratios (HRs) of death using a Cox proportional hazards model. RESULTS: We identified 214 patients with HLH. The reported age and sex-adjusted incidence increased twofold over the period, from around one to around two per million. Incidence was highest in those below 1 year (14.6 per million) and ≥75 years (2.2 per million), and lowest in those aged 15-44 years (0.8 per million). One-year survival varied by age and sex from 77% (95% confidence interval [CI] 63%-86%) in those <15 years to 30% (95% CI 14%-49%) in those ≥75. In patients with haematological cancer, the adjusted HR for death was 2.60 (95% CI 1.45-4.66) compared to patients with no malignant or rheumatological disease. CONCLUSION: The incidence of HLH diagnosis in England has increased between 2000 and 2016 and occurs in all ages with varying underlying diseases. One-year survival varies substantially, being particularly poor in those aged over 75 years and those with haematological malignancy.


Assuntos
Linfo-Histiocitose Hemofagocítica , Adolescente , Adulto , Idoso , Estudos de Coortes , Humanos , Incidência , Linfo-Histiocitose Hemofagocítica/diagnóstico , Linfo-Histiocitose Hemofagocítica/epidemiologia , Modelos de Riscos Proporcionais , Sistema de Registros , Adulto Jovem
13.
Br J Haematol ; 194(6): 1039-1044, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34386978

RESUMO

We assessed the validity of coded healthcare data to identify cases of haemophagocytic lymphohistiocytosis (HLH). Hospital Episode Statistics (HES) identified 127 cases within five hospital Trusts 2013-2018 using ICD-10 codes D76.1, D76.2 and D76.3. Hospital records were reviewed to validate diagnoses. Out of 74 patients, 73 were coded D76.1 or D76.2 (positive predictive value 89·0% [95% Confidence Interval {CI} 80·2-94·9%]) with confirmed/probable HLH. For cases considered not HLH, 44/53 were coded D76.3 (negative predictive value 97·8% [95% CI 88·2-99·9%]). D76.1 or D76.2 had 68% sensitivity in detecting HLH compared to an established active case-finding HLH register in Sheffield. Office for National Statistics (ONS) mortality data (2003-2018) identified 698 patients coded D76.1, D76.2 and D76.3 on death certificates. Five hundred and forty-one were coded D76.1 or D76.2 of whom 524 (96·9%) had HLH in the free-text cause of death. Of 157 coded D76.3, 66 (42·0%) had HLH in free text. D76.1 and D76.2 codes reliably identify HLH cases, and provide a lower bound on incidence. Non-concordance between D76.3 and HLH excludes D76.3 as an ascertainment source from HES. Our results suggest electronic healthcare data in England can enable population-wide registration and analysis of HLH for future research.


Assuntos
Linfo-Histiocitose Hemofagocítica/epidemiologia , Adolescente , Adulto , Inglaterra/epidemiologia , Feminino , Humanos , Incidência , Linfo-Histiocitose Hemofagocítica/diagnóstico , Masculino , Pessoa de Meia-Idade , Sistema de Registros , Adulto Jovem
14.
Nutrients ; 13(6)2021 Jun 09.
Artigo em Inglês | MEDLINE | ID: mdl-34207613

RESUMO

Maternal diet, physical activity (PA) behaviours, and gestational weight gain (GWG) are important for optimum health of women and their babies. This secondary analysis of the GLOWING pilot cluster trial explored these among women living with obesity in high deprivation. Pregnant women completed food frequency, PA and psychosocial questionnaires. Weights were retrieved from medical records and measured during routine appointments with midwives. Descriptive and regression analyses were stratified by obesity class. A total of 163 women were recruited; 54.0% had class 1 obesity, 25.8% class 2, 20.2% class 3, and 76.1% lived in the two most deprived quintiles. Women had suboptimal dietary intake, particularly for oily fish, fruit and vegetables. PA was predominantly light intensity, from household, care and occupational activities. Most women gained weight outside of Institute of Medicine (IOM) guideline recommendations (87.8%); women in class 3 obesity were most likely to have inadequate GWG below IOM recommendations (58.3%, p < 0.01) and reduced odds of excessive GWG compared with class 1 (AOR 0.13, 95% 0.04-0.45). Deprived women with obesity have a double inequality as both increase pregnancy risks. This population requires support to meet guideline recommendations for diet, PA and GWG. Further research exploring obesity classes would inform policies and care to achieve the best pregnancy outcomes.


Assuntos
Dieta/estatística & dados numéricos , Exercício Físico , Ganho de Peso na Gestação/fisiologia , Obesidade/fisiopatologia , Complicações na Gravidez/fisiopatologia , Adulto , Ensaios Clínicos como Assunto , Inquéritos sobre Dietas , Inglaterra/epidemiologia , Feminino , Humanos , Fenômenos Fisiológicos da Nutrição Materna , Política Nutricional , Projetos Piloto , Gravidez , Resultado da Gravidez/epidemiologia , Gestantes/psicologia , Análise de Regressão , Fatores de Risco , Inquéritos e Questionários
15.
Nutrients ; 13(5)2021 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-34067722

RESUMO

Bariatric surgery prior to pregnancy is a significant risk factor for small for gestational age (SGA) babies. This case-control study investigated differences between mothers delivering an SGA baby following bariatric surgery, compared to those delivering an appropriate for gestational age (AGA) baby. Out of 129 babies born to mothers in the AURORA cohort study, 25 were SGA (<10th percentile) and 97 were AGA (10th-90th percentile). Higher gestational weight gain (GWG) was significantly associated with decreased odds of SGA (aOR per kg 0.92, 95% CI 0.85-0.99). According to the Institute of Medicine GWG guidelines, 44% of SGA mothers had 'inadequate' GWG compared to 17% of AGA mothers. Nearly half of the mothers had 'excessive' GWG yet still gave birth to an SGA or AGA baby. Mothers of SGA babies lost more weight following bariatric surgery (45.6 ± 14.4 kg vs. 39.0 ± 17.9 kg). Women who reported receiving nutritional advice following bariatric surgery were significantly less likely to have an SGA baby (aOR 0.15, 95% CI 0.0.4-0.55). Women with a history of bariatric surgery should be provided with specialized support before and during pregnancy to encourage adequate nutritional intake and weight gain to support healthy fetal growth.


Assuntos
Cirurgia Bariátrica/efeitos adversos , Ganho de Peso na Gestação , Recém-Nascido Pequeno para a Idade Gestacional , Complicações Pós-Operatórias/fisiopatologia , Complicações na Gravidez/fisiopatologia , Adulto , Estudos de Casos e Controles , Feminino , Idade Gestacional , Humanos , Recém-Nascido , Razão de Chances , Período Pós-Operatório , Gravidez , Complicações na Gravidez/etiologia , Fatores de Risco
16.
Nutrients ; 13(5)2021 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-34068979

RESUMO

The prevalence of overweight/obesity is high among Black women in England, who also face high risks of pregnancy and childbirth complications. This study explored African migrant women's perceptions of pre- and post-migration influences on their weight-related behaviours and weight management support during pregnancy. Interviews were conducted with women of child-bearing age from Ghana, Nigeria, and Cameroon (n = 23). Data were analysed using thematic analysis. Four themes were identified: changing dietary behaviours after migration, changing physical activity (PA) behaviours after migration, increased discourse on obesity, and weight management advice and support received. Navigating a new food environment, interactions with other populations in England, and the need to socialise influenced changes in dietary behaviours. Participants considered that living in England 'makes you lazy' due to its obesogenic environment, while increased discourses on obesity heightened weight awareness. Women struggled to relate to dietary advice from midwives but found PA advice useful. Relatives provided valuable support but could influence unhealthy weight-related practices. There is a need for interventions addressing gaps in weight management support for these women, especially considering their migrant backgrounds and multicultural identities. Further research is needed to understand their unique challenges, and collaborations with relatives could inform the development of effective weight management interventions.


Assuntos
Peso Corporal , Comportamento Alimentar/psicologia , Comportamentos Relacionados com a Saúde , Gestantes/psicologia , Migrantes , Adulto , Camarões , Dieta , Inglaterra , Exercício Físico , Feminino , Gana , Educação em Saúde , Humanos , Nigéria , Obesidade/epidemiologia , Sobrepeso , Percepção , Gravidez , Complicações na Gravidez , Adulto Jovem
17.
Birth Defects Res ; 113(12): 968-980, 2021 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-33754462

RESUMO

BACKGROUND: Few data are available on the prevalence of neural tube defects (NTDs) within different ethnic communities of the United Kingdom. This study aimed to calculate prevalence estimates for NTD-affected pregnancies, classified by maternal ethnicity, and to explore why variations in prevalence might exist. METHODS: A cross-sectional study was performed with data from regional congenital anomaly registers in England and Wales, for NTD-affected pregnancies between 2006 and 2011. Using binomial regression models, we examined NTD-affected pregnancy prevalence estimates and rate ratios (PRRs), by maternal ethnicity. RESULTS: The prevalence of NTDs was 12.14 per 10,000 births, with no differences between study years. Anencephaly, encephalocele and spina bifida occurred at 4.98, 1.37 and 5.80 per 10,000 births respectively. Mothers of Indian ethnicity were 1.84 times more likely (95% CI: 1.24, 2.73) and Bangladeshi mothers 2.86 times more likely (95% CI: 1.48, 5.53) than White mothers to have an NTD-affected pregnancy, after adjusting for maternal deprivation and maternal age. The excess prevalence in Indian mothers was specifically for anencephaly (PRR 2.57; 95% CI: 1.52, 4.34), and in Bangladeshi mothers the trend was for increased spina bifida (PRR 3.86; 95% CI: 0.72, 8.69). Anencephaly in Indian mothers was especially associated with other congenital anomalies (non-isolated NTDs). CONCLUSIONS: Different British ethnic groups vary in NTD prevalence. The excess prevalence of anencephaly as a non-isolated NTD in pregnancies of Indian mothers could indicate involvement of genetic or other unmeasured behavioral factors. Future work is needed to seek etiological explanations for the ethnicity differences and to develop improved methods for primary prevention.


Assuntos
Anencefalia , Defeitos do Tubo Neural , Anencefalia/epidemiologia , Estudos Transversais , Etnicidade , Feminino , Humanos , Defeitos do Tubo Neural/epidemiologia , Gravidez , Prevalência
18.
Clin Endocrinol (Oxf) ; 94(2): 330-340, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33128233

RESUMO

OBJECTIVE: A suboptimal quality of life (QoL) has been reported in patients with Graves' disease treated in adult life, but long-term QoL in those treated in childhood and adolescence is unclear. We wanted to understand how Graves' disease and its management impact on the physical, psychological and social well-being of young people and their longer-term QoL. DESIGN, PATIENTS AND MEASUREMENTS: Two questionnaires were used to assess QoL and patient experience of Graves' disease; PedsQL™ Generic Core Scales and a Graves' disease questionnaire devised for this project. The anonymized questionnaires were sent to young people (<30 years) diagnosed with Graves' disease in childhood and adolescence and managed at a tertiary paediatric endocrine unit in the North of England. Respondent QoL scores were compared with a healthy UK cohort. RESULTS: Questionnaires were sent to 51 young people, and 26 responded (51%). Graves' patients reported a lower total QoL score compared with the healthy cohort (p = .003). This was particularly apparent in the psychosocial domain (p = .0016). No patient regretted having definitive treatment (surgery/radioiodine), and all said they would recommend it to others. Half of those who had received definitive treatment still did not feel recovered. There was no difference in the long-term QoL in those who did/did not receive definitive treatment (p = .40). CONCLUSIONS: This study highlights short- and long-term impacts on the QoL and general well-being of young people with Graves' disease. There were no regrets regarding the choice of definitive treatment. This information will help inform the counselling of patients and their families.


Assuntos
Doença de Graves , Qualidade de Vida , Adolescente , Adulto , Antitireóideos , Criança , Doença de Graves/terapia , Humanos , Radioisótopos do Iodo , Inquéritos e Questionários
19.
BMC Pregnancy Childbirth ; 20(1): 502, 2020 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-32873239

RESUMO

BACKGROUND: Maternal obesity has severe physical impacts such as increased chances of pre-eclampsia and gestational diabetes. However, mental health impacts are given less attention within antenatal care. Evidence suggests that women with obesity carry increased risk of maternal depression and anxiety, however, this association is not well researched amongst South Asian women in the UK who are vulnerable to both. The aim of this study was to investigate the association between antenatal depression and anxiety and early pregnancy BMI, within and between White British and South Asian women, using data from the Born in Bradford cohort. METHODS: Depression and anxiety were assessed using the General Health Questionnaire (GHQ); a GHQ score of > 0 for the depression subscale and > 6 for anxiety. Mother's BMI was stratified into six World Health Organisation BMI categories (underweight, recommended, overweight or obese class 1-3). To determine associations, univariate and multivariate logistic regression models (adjusting for maternal age, education, deprivation and smoking) were used. RESULTS: There were 7824 women included (3514 White British and 4310 South Asian). South Asian women were more likely to have depression than White British (43.3% vs 36.1% p < 0.0001) and less likely to have anxiety (45.3% vs 48.4% p < 0.01). There were no significant associations between BMI and depression or anxiety in South Asian women. White British women with an overweight BMI had higher odds of anxiety compared with women with a recommended BMI (Adjusted Odds Ratio 1.25, 95% Confidence Interval 1.05-1.47). No significant associations were observed for other BMI categories. Smoking was a risk factor for antenatal depression (AOR 1.32, 95% CI 1.12-1.56; AOR 2.08, 95% CI 1.49-2.91) and anxiety (AOR 1.34, 95% CI 1.14-1.57; (AOR 2.87, 95% CI 2.02-4.07) in both White British and South Asian women, respectively. CONCLUSIONS: Although South Asian women have a higher prevalence of depression than White women in this cohort, the known associations between maternal obesity and anxiety do not appear to be present. More studies are needed using validated depression tools for South Asian pregnant women. Mental health screening during antenatal care is important for South Asian women, with factors such as smoking considered.


Assuntos
Ansiedade/complicações , Ansiedade/epidemiologia , Índice de Massa Corporal , Depressão/complicações , Depressão/epidemiologia , Obesidade Materna/complicações , Obesidade Materna/psicologia , Complicações na Gravidez/epidemiologia , Complicações na Gravidez/psicologia , Adulto , Povo Asiático , Estudos de Coortes , Análise de Dados , Feminino , Humanos , Gravidez , Estudos Retrospectivos , Reino Unido/epidemiologia , População Branca
20.
PLoS Med ; 16(8): e1002866, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31386658

RESUMO

BACKGROUND: Women who undergo bariatric surgery prior to pregnancy are less likely to experience comorbidities associated with obesity such as gestational diabetes and hypertension. However, bariatric surgery, particularly malabsorptive procedures, can make patients susceptible to deficiencies in nutrients that are essential for healthy fetal development. The objective of this systematic review and meta-analysis is to investigate the association between pregnancy after bariatric surgery and adverse perinatal outcomes. METHODS AND FINDINGS: Searches were conducted in Medline, Embase, PsycINFO, CINAHL, Scopus, and Google Scholar from inception to June 2019, supplemented by hand-searching reference lists, citations, and journals. Observational studies comparing perinatal outcomes post-bariatric surgery to pregnancies without prior bariatric surgery were included. Outcomes of interest were perinatal mortality, congenital anomalies, preterm birth, postterm birth, small and large for gestational age (SGA/LGA), and neonatal intensive care unit (NICU) admission. Pooled effect sizes were calculated using random-effects meta-analysis. Where data were available, results were subgrouped by type of bariatric surgery. We included 33 studies with 14,880 pregnancies post-bariatric surgery and 3,979,978 controls. Odds ratios (ORs) were increased after bariatric surgery (all types combined) for perinatal mortality (1.38, 95% confidence interval [CI] 1.03-1.85, p = 0.031), congenital anomalies (1.29, 95% CI 1.04-1.59, p = 0.019), preterm birth (1.57, 95% CI 1.38-1.79, p < 0.001), and NICU admission (1.41, 95% CI 1.25-1.59, p < 0.001). Postterm birth decreased after bariatric surgery (OR 0.46, 95% CI 0.35-0.60, p < 0.001). ORs for SGA increased (2.72, 95% CI 2.32-3.20, p < 0.001) and LGA decreased (0.24, 95% CI 0.14-0.41, p < 0.001) after gastric bypass but not after gastric banding. Babies born after bariatric surgery (all types combined) weighed over 200 g less than those born to mothers without prior bariatric surgery (weighted mean difference -242.42 g, 95% CI -307.43 to -177.40 g, p < 0.001). There was low heterogeneity for all outcomes (I2 < 40%) except LGA. Limitations of our study are that as a meta-analysis of existing studies, the results are limited by the quality of the included studies and available data, unmeasured confounders, and the small number of studies for some outcomes. CONCLUSIONS: In our systematic review of observational studies, we found that bariatric surgery, especially gastric bypass, prior to pregnancy was associated with increased risk of some adverse perinatal outcomes. This suggests that women who have undergone bariatric surgery may benefit from specific preconception and pregnancy nutritional support and increased monitoring of fetal growth and development. Future studies should explore whether restrictive surgery results in better perinatal outcomes, compared to malabsorptive surgery, without compromising maternal outcomes. If so, these may be the preferred surgery for women of reproductive age. TRIAL REGISTRATION: PROSPERO CRD42017051537.


Assuntos
Cirurgia Bariátrica/efeitos adversos , Resultado da Gravidez/epidemiologia , Peso ao Nascer , Feminino , Idade Gestacional , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal/estatística & dados numéricos , Mortalidade Perinatal , Gravidez
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