Sex prevalence of major congenital anomalies in the United Kingdom: a national population-based study and international comparison meta-analysis.

BACKGROUND: The aim of this study was to assess sex differences in major congenital anomaly (CA) diagnoses within a national population sample; to examine the influence of sociodemographic and maternal factors on these risks; and to conduct a meta-analysis using estimates from other population-based studies. METHODS: We conducted a population-based study in a United Kingdom research database of prospectively collected primary care data (The Health Improvement Network) including children born 1990 to 2009 (n = 794,169) and identified major CA diagnoses using EUROCAT (European Surveillance of Congenital Anomalies) classification. Prevalence ratios (PR) were used to estimate the risk of CA in males compared with females for any CA, system-specific subgroups and specific CA diagnoses. In a subpopulation of children whose medical records were linked to their mothers', we assessed the effect of adjusting for sociodemographic and maternal factors on sex odds ratios. PRs were pooled with measures from previously published studies. RESULTS: The prevalence of any CA was 307/10,000 in males (95% CI, 302-313) and 243/10,000 in females (95% CI, 238-248). Overall the risk of any CA was 26% greater in males (PR (male: female) 1.26, 95% CI, 1.23-1.30) however there was considerable variation across specific diagnoses. The magnitude and direction of risk did not change for any specific CA upon adjustment for sociodemographic and maternal factors. Our PRs were highly consistent with those from previous studies. CONCLUSION: The overall risk of CA is greater in males than females, although this masked substantial variation by specific diagnoses. Sociodemographic and maternal factors do not appear to affect these risks

Completeness of maternal smoking status recording during pregnancy in United Kingdom primary care data.

BACKGROUND: Given the health impacts of smoking during pregnancy and the opportunity for primary healthcare teams to encourage pregnant smokers to quit, our primary aim was to assess the completeness of gestational smoking status recording in primary care data and investigate whether completeness varied with women's characteristics. As a secondary aim we assessed whether completeness of recording varied before and after the introduction of the Quality and Outcomes Framework (QOF). METHODS: In The Health Improvement Network (THIN) database we calculated the proportion of pregnancies ending in live births or stillbirths where there was a recording of maternal smoking status for each year from 2000 to 2009. Logistic regression was used to assess variation in the completeness of maternal smoking recording by maternal characteristics, before and after the introduction of QOF. RESULTS: Women had a record of smoking status during the gestational period in 28% of the 277,552 pregnancies identified. In 2000, smoking status was recorded in 9% of pregnancies, rising to 43% in 2009. Pregnant women from the most deprived group were 17% more likely to have their smoking status recorded than pregnant women from the least deprived group before QOF implementation (OR 1.17, 95% CI 1.10-1.25) and 42% more likely afterwards (OR 1.42, 95% CI 1.37-1.47). A diagnosis of asthma was related to recording of smoking status during pregnancy in both the pre-QOF (OR 1.63, 95% CI 1.53-1.74) and post-QOF periods (OR 2.08, 95% CI 2.02-2.15). There was no association between having a diagnosis of diabetes and recording of smoking status during pregnancy pre-QOF however, post-QOF diagnosis of diabetes was associated with a 12% increase in recording of smoking status (OR 1.12, 95% CI 1.05-1.19). CONCLUSION: Recording of smoking status during pregnancy in primary care data is incomplete though has improved over time, especially after the implementation of the QOF, and varies by maternal characteristics and QOF-incentivised morbidities

Which patients are assessed by lung cancer nurse specialists? A national lung cancer audit study of over 128,000 patients across England

Background: Lung cancer nurse specialists (LCNS) are integral to the multidisciplinary clinical team, providing personalised physical and psycho-social interventions, and care management for people with lung cancer. The National Institute of Health and Care Excellence (NICE) recommend that all patients have access to a LCNS. We conducted a national study assessing whether there is variation in access to and timing of LCNS assessment. Methods: The National Cancer Action Team’s LCNS workforce census in England was linked with patient and hospital Trust data from the English National Lung Cancer Audit. Multivariate logistic regression was used to assess features associated with LCNS assessment. Results: 128,124 lung cancer patients were seen from 2007 to 2011. LCNS assessment confirmation was ‘yes’ in 62%, ‘no’ in 6% and ‘missing’ in 32%. Where (in clinic versus ward) and when (before versus after diagnosis) patients were assessed by a LCNS also varied. Older patients with poor performance status, early cancer stage, and comorbidities were less likely to be assessed; there was no difference with sex or socioeconomic group. Patients receiving any anti-cancer treatment were more likely to be assessed. Assessment was lower in Trusts with high annual patient numbers (odds ratio = 0.58, 95% confidence interval 0.37–0.91) and where LCNS caseload > 250 (0.69, 0.41–1.16, although not statistically significant), but increased where workload was conducted mostly by band 8 nurses (2.22, 1.22–4.02). Conclusion: LCNS assessment varied by patient and Trust features, which may indicate unmet need for some patients. The current workforce needs to expand as well as retain experienced LCNSs

Congenital Anomalies in Children of Mothers Taking Antiepileptic Drugs with and without Periconceptional High Dose Folic Acid Use: A Population-Based Cohort Study.

BACKGROUND: Antenatal antiepileptic drug (AED) use has been found to be associated with increased major congenital anomaly (CA) risks. However whether such AED-associated risks were different according to periconceptional high dose (5mg daily) folic acid supplementation is still unclear. METHODS: We included 258,591 singleton live-born children of mothers aged 15-44 years in 1990-2013 from The Health Improvement Network, a large UK primary care database. We identified all major CAs according to the European Surveillance of Congenital Anomalies classification. Absolute risks and adjusted odds ratios (aOR) were calculated comparing children of mothers prescribed AEDs to those without such prescriptions, stratified by folic acid prescriptions around the time of conception (one month before conception to two months post-conception). RESULTS: CA risk was 476/10,000 in children of mothers with first trimester AEDs compared with 269/10,000 in those without AEDs equating to an aOR of 1.82, 95% confidence interval 1.30-2.56. The highest system-specific risks were for heart anomalies (198/10,000 and 79/10,000 respectively, aOR 2.49,1.47-4.21). Sodium valproate and lamotrigine were both associated with increased risks of any CA (aOR 2.63,1.46-4.74 and aOR 2.01,1.12-3.59 respectively) and system-specific risks. Stratification by folic acid supplementation did not show marked reductions in AED-associated risks (e.g. for CAs overall aOR 1.75, 1.01-3.03 in the high dose folic acid group and 1.94, 95%CI 1.21-3.13 in the low dose or no folic acid group); however, the majority of mothers taking AEDs only initiated high dose folic acid from the second month of pregnancy. CONCLUSIONS: Children of mothers with AEDs in the first trimester of pregnancy have a 2-fold increased risk of major CA compared to those unexposed. We found no evidence that prescribed high dose folic acid supplementation reduced such AED-associated risks. Although statistical power was limited, prescribing of folic acid too late for it to be effective during the organogenic period or selective prescribing to those with more severe morbidity may explain these findings

Socioeconomic variation in the incidence of childhood coeliac disease in the UK.

BACKGROUND: Serological studies indicate that evidence of coeliac disease (CD) exists in about 1% of all children, but we lack estimates of current diagnostic patterns among children and how they vary by socioeconomic group. METHODS: We identified all children aged 0-18 years between 1993 and 2012 who were registered with general practices across the UK that contribute to a large population-based general practice database. The incidence of CD was evaluated in each quintile of the Townsend index of deprivation and stratified by age, sex, country and calendar year. RESULTS: Among 2,063,421 children, we identified 1247 CD diagnoses, corresponding to an overall CD incidence of 11.9 per 100,000 person-years, which was similar across the UK countries and higher in girls than in boys. We found a gradient of CD diagnosis across socioeconomic groups, with the rate of diagnosis being 80% higher in children from the least-deprived areas than in those from the most-deprived areas (incident rate ratio 1.80, 95% CI 1.45 to 2.22). This pattern held for both boys and girls and across all ages. Across all four countries of the UK, we found similar associations between CD and socioeconomic status. While CD incidence up to age 2 remained stable over the study period, diagnoses at older ages have almost tripled over the past 20 years. CONCLUSIONS: Children living in less socioeconomically deprived areas in the UK are more likely to be diagnosed with CD. Increased implementation of diagnostic guidelines could result in better case identification in more-deprived areas

The incidence of first stroke in pregnant and non-pregnant women of childbearing age: a population-based cohort study from England

Background: Pregnant women may have an increased risk of stroke compared to non-pregnant women of similar age, but the magnitude and the timing of such risk are unclear. We examined the risk of first stroke event in women of childbearing age and compared the risk during pregnancy and in the early postpartum period to background risk outside these periods. Methods and Results: We conducted an open cohort study of 2,046,048 women aged 15-49 years between 1st April 1997 and 31th March 2014 using linked primary (Clinical Practice Research Datalink) and secondary (Hospital Episode Statistics) care records in England. Risk of first stroke was assessed by calculating the incidence rate of stroke in antepartum, peripartum (2 days before until 1 day after delivery), early (first six weeks) and late (second six weeks) postpartum periods, compared with non-pregnant time using a Poisson regression model with adjustment for maternal age, socioeconomic group and calendar time. A total of 2,511 women had a first stroke. The incidence rate of stroke was 25.0 per 100,000 person-years (95% confidence interval 24.0-26.0) in non-pregnant time. The rate was lower antepartum (10.7/100,000 person-years, 7.6-15.1), but 9-fold higher peripartum (161.1/100,000 person-years, 80.6-322.1) and 3-fold higher early postpartum (47.1/100,000 person-years, 31.3-70.9). Rates of ischaemic and haemorrhagic stroke both increased peripartum and early postpartum. Conclusions: Although the absolute risk of first stroke is low in women of childbearing age, health care professionals should be aware of a considerable increase in relative risk during the peripartum and early postpartum periods

Are working practices of lung cancer nurse specialists associated with variation in peoples' receipt of anticancer therapy?

OBJECTIVES: Treatment choices for people with lung cancer may be influenced by contact and engagement with lung cancer nurse specialists (LCNSs). We investigated how service factors, LCNS workload, and LCNS working practices may influence the receipt of anticancer treatment. MATERIALS AND METHODS: English National Lung Cancer Audit data and inpatient Hospital Episode Statistics for 109,079 people with lung cancer surviving 30 days from diagnosis were linked along with LCNS workforce census data and a bespoke nationwide LCNS survey. Multinomial logistic regression was used to determine adjusted relative risk ratios (RRRs) for receipt of anticancer therapies associated with LCNS assessment, LCNS workforce composition, caseload, LCNS reported working practices, treatment facilities at the patients' attending hospitals, and the size of the lung cancer service. RESULTS: Assessment by an LCNS was the strongest independent predictor for receipt of anticancer therapy, with early LCNS assessments being particularly associated with greater receipt of surgery (RRR 1.85, 95%CI 1.63-2.11). For people we considered clinically suitable for surgery, receipt was 55%. Large LCNS caseloads were associated with decreased receipt of surgery among suitable patients (RRR 0.71, 95%CI 0.51-0.97) for caseloads >250 compared to ≤150. Reported LCNS working practices were associated with receipt of surgery, particularly provision of psychological support (RRR 1.60, 95%CI 1.02-2.51) and social support (RRR 1.56, 95%CI 1.07-2.28). CONCLUSION: LCNS assessment, workload, and working practices are associated with the likelihood of patients receiving anticancer therapy. Enabling and supporting LCNSs to undertake key case management interventions offers an opportunity to improve treatment uptake and reduce the apparent gap in receipt of surgery for those suitable

Patients' attitudes to risk in lung cancer surgery: a qualitative study

Objectives Lung cancer surgery leads to long term survival for some patients but little is known about how patients decide whether to accept the associated surgical risks. The objective of this qualitative study was to explore patients’ attitudes to the risks associated with lung cancer surgery. Methods Fifteen patients with resectable lung cancer, recruited via multi-disciplinary team meetings at an English tertiary referral centre, participated in semi-structured interviews to explore their attitudes to the morbidity and mortality risks associated with lung cancer surgery. Transcripts were analysed using the framework method. Results Participants reported being ‘pleased’ to hear that they were suitable for surgery and felt that surgery was not a treatment to be turned down because they did not see any alternatives. Participants had some knowledge of perioperative risks, including mortality estimates; however, many voiced a preference not to know these risks and to let the medical team decide their treatment plan. Some found it difficult to relate the potential risks and complications of surgery to their own situation and appeared willing to accept high perioperative mortality risks. Generally, participants were willing to accept quite severe long-term postoperative breathlessness; however, it was apparent that many actually found this possibility difficult to imagine. Conclusion Patients do not necessarily wish to know details of risks associated with lung cancer surgery and may wish to defer decisions about treatment to their medical team. Investment in the doctor-patient relationship, particularly for the surgeon, is therefore important in the management of patients with lung cancer

Adverse Pregnancy Outcomes Among Women with Inflammatory Bowel Disease: A Population-Based Study from England

BACKGROUND: There is limited contemporary population-based evidence on adverse birth outcomes and pregnancy-related complications for women with inflammatory bowel disease (IBD). This study provides such estimates of these risks and assesses variation by IBD type and surgical interventions. METHODS: We calculated the proportion of pregnancies in women with and without IBD between 1997 and 2012 throughout England using linked primary (Clinical Practice Research Datalink) and secondary care (Hospital Episode Statistics) data. Risk of pregnancy-related complications and adverse birth outcomes in women with Crohn's disease and ulcerative colitis were compared with risks in women without IBD using odds ratios (ORs). RESULTS: Of 364,363 singleton pregnancies resulting in live or stillbirths, 1969 (0.5%) were in women with IBD. Women with Crohn's disease were more likely to have preterm births (OR = 1.42; 95% confidence interval, 1.12-1.79), babies with low birth weights (OR = 1.39; 95% confidence interval, 1.05-1.83), and postpartum hemorrhage (OR = 1.27; 95% confidence interval, 1.04-1.55), whereas women with ulcerative colitis were only at increased risk of preterm births with an absolute risk difference of <2.7%. These risks remained independent of caesarean section. Prior surgery for IBD did not increase the risk of adverse birth outcomes or pregnancy-related complications compared with cases without surgery, however, women with IBD were more likely to have an elective caesarean section. CONCLUSIONS: Women with Crohn's disease have increased risks of some specific pregnancy-related complications and adverse birth outcomes which are independent of caesarean section, however, the absolute risk differences are small, indicating that most women with IBD will have an uncomplicated pregnancy

Conducting retrospective impact analysis to inform a medical research charity’s funding strategies: The case of Asthma UK

© 2013 Hanney et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.This article has been made available through the Brunel Open Access Publishing Fund.BACKGROUND: Debate is intensifying about how to assess the full range of impacts from medical research. Complexity increases when assessing the diverse funding streams of funders such as Asthma UK, a charitable patient organisation supporting medical research to benefit people with asthma. This paper aims to describe the various impacts identified from a range of Asthma UK research, and explore how Asthma UK utilised the characteristics of successful funding approaches to inform future research strategies. METHODS: We adapted the Payback Framework, using it both in a survey and to help structure interviews, documentary analysis, and case studies. We sent surveys to 153 lead researchers of projects, plus 10 past research fellows, and also conducted 14 detailed case studies. These covered nine projects and two fellowships, in addition to the innovative case studies on the professorial chairs (funded since 1988) and the MRC-Asthma UK Centre in Allergic Mechanisms of Asthma (the ‘Centre’) which together facilitated a comprehensive analysis of the whole funding portfolio. We organised each case study to capture whatever academic and wider societal impacts (or payback) might have arisen given the diverse timescales, size of funding involved, and extent to which Asthma UK funding contributed to the impacts. RESULTS: Projects recorded an average of four peer-reviewed journal articles. Together the chairs reported over 500 papers. All streams of funding attracted follow-on funding. Each of the various categories of societal impacts arose from only a minority of individual projects and fellowships. Some of the research portfolio is influencing asthma-related clinical guidelines, and some contributing to product development. The latter includes potentially major breakthroughs in asthma therapies (in immunotherapy, and new inhaled drugs) trialled by university spin-out companies. Such research-informed guidelines and medicines can, in turn, contribute to health improvements. The role of the chairs and the pioneering collaborative Centre is shown as being particularly important. CONCLUSIONS: We systematically demonstrate that all types of Asthma UK’s research funding assessed are making impacts at different levels, but the main societal impacts from projects and fellowships come from a minority of those funded. Asthma UK used the study’s findings, especially in relation to the Centre, to inform research funding strategies to promote the achievement of impact.This study was funded by Asthma UK