- Professor of Paediatrics, UCL.Clinician scientist and trialist. Inventor of medicines. Consultant Paediatrician. Consultancy for Pharma Industry. Medicolegal Expertedit
Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients... more
Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. Results Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and...
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To investigate the risks of ovarian, breast, and corpus uteri cancer in women who have had assisted reproduction. Large, population based, data linkage cohort study. All women who had assisted reproduction in Great Britain, 1991-2010, as... more
To investigate the risks of ovarian, breast, and corpus uteri cancer in women who have had assisted reproduction. Large, population based, data linkage cohort study. All women who had assisted reproduction in Great Britain, 1991-2010, as recorded by the Human Fertilisation and Embryology Authority (HFEA). HFEA fertility records for cohort members were linked to national cancer registrations. Observed first diagnosis of ovarian, breast, and corpus uteri cancer in cohort members were compared with age, sex, and period specific expectation. Standardised incidence ratios (SIRs) were calculated by use of age, sex, and period specific national incidence rates. 255 786 women contributed 2 257 789 person years' follow-up. No significant increased risk of corpus uteri cancer (164 cancers observed 146.9 cancers expected; SIR 1.12, 95% confidence interval 0.95 to 1.30) was found during an average of 8.8 years' follow-up. This study found no significantly increased risks of breast cance...
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The diagnosis of tongue-tie (or ankyloglossia) has increased more than 10-fold in some countries. Whether this is a global phenomenon or related to cultural and professional differences is uncertain. An online survey in English, Japanese,... more
The diagnosis of tongue-tie (or ankyloglossia) has increased more than 10-fold in some countries. Whether this is a global phenomenon or related to cultural and professional differences is uncertain. An online survey in English, Japanese, Chinese and Spanish was disseminated between May and November 2016 via 27 international professional bodies to >30 clinical professions chosen a priori to represent occupations involved in the management of neonatal ankyloglossia. A total of 1721 responses came from nursing (51%), medical (40%), dental (6%) and allied health (4%) clinicians. Nurses (40%) and allied health (34%) professionals were more likely than doctors (8%) to consider ankyloglossia as important for lactation problems, as were western (83%) compared to Asian (52%) clinicians. Referrals to clinicians for ankyloglossia management originated mainly from parents (38%). Interprofessional referrals were not clearly defined. Frenectomies were most likely to be performed by surgeons (...
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ABSTRACT A total of 91 children (68 singletons, 20 twins and three triplets) who were conceived from cryopreserved embryos between 27 December 1989 and 18 January 1994, and 83 normally conceived control children (81 singletons and two... more
ABSTRACT A total of 91 children (68 singletons, 20 twins and three triplets) who were conceived from cryopreserved embryos between 27 December 1989 and 18 January 1994, and 83 normally conceived control children (81 singletons and two twins) of a similar age, sex and social class, were assessed for minor congenital anomalies and major congenital malformations. Their development was assessed using the Griffiths Scales of Mental Development. The incidence of minor congenital anomalies (31.9% in the cryopreserved embryo group and 21.7% in the controls) and major congenital malformations (3.3 and 2.4% respectively) in our two groups of children was statistically similar. The relative risk (odds ratio and 95% confidence interval) in the cryopreserved embryo group compared with the controls was 1.7 (0.8, 3.3) for minor congenital anomalies and 1.4 (0.2, 8.5) for major congenital malformations. The minor congenital anomalies were mostly naevi and haemangiomas. The major congenital malformations included Down's syndrome, Beckwith-Wiedemann syndrome and hypophosphataemic rickets in the cryopreserved embryo group and hydronephrosis and gastroschisis in the controls. The Griffiths assessment showed that children from the cryopreserved embryo group and the controls were functioning at a similar level. The mean Griffiths quotient and subquotient values were greater than the standard 100 in children with or without congenital abnormalities. These results in the cryopreserved embryo group are reassuring in that the minor congenital anomaly and major congenital malformation rates were similar to those in normally conceived children of a similar age, sex and social class and their development was not adversely affected by cryopreservation.
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A mobile app may increase the reporting of adverse drug reactions (ADRs) and improve the communication of new drug safety information. Factors that influence the use of an app for such two-way risk communication need to be considered at... more
A mobile app may increase the reporting of adverse drug reactions (ADRs) and improve the communication of new drug safety information. Factors that influence the use of an app for such two-way risk communication need to be considered at the development stage. Our aim was to reveal the factors that may influence healthcare professionals (HCPs) and patients to use an app for two-way risk communication. Focus group discussions and face-to-face interviews were conducted in the Netherlands, Spain and the UK. Patients with type 2 diabetes mellitus, patients with a rare disease or their caregivers and adolescents with health conditions were eligible to participate. HCPs included pharmacists, paediatricians, general practitioners, internists, practice nurses and professionals caring for patients with a rare disease. Patients and HCPs were recruited through various channels. The recorded discussions and interviews were transcribed verbatim. The dataset was analysed using thematic analysis an...
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... Sutcliffe, AG and Samad, L and Bashir, HE and Marven, S and Cameron, JC and Taylor, B (2010) Intussusception in the ... of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Child Health >... more
... Sutcliffe, AG and Samad, L and Bashir, HE and Marven, S and Cameron, JC and Taylor, B (2010) Intussusception in the ... of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Child Health > Department of General and Adolescent Paediatrics > ICH ...
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Research Interests: Obstetrics, Child Development, Birth, Prospective studies, Humans, and 14 moreChild, Fertility and Sterility, Assisted Reproduction, Follow-up studies, Health Status, Clinical Sciences, Gynecology, Fertilization, Public health systems and services research, Reproducibility of Results, Case Control Studies, Nino, Child preschool, and Paediatrics and reproductive medicine
ABSTRACT Journal English Article LANCET LTD JUN 15 562JX LONDON LANCET 84 THEOBALDS RD, LONDON WC1X 8RR, ENGLAND
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Anecdotal reports suggest that increasing numbers of children in the UK are presenting with clinical manifestations of vitamin D deficiency (VDD). However, the epidemiology of symptomatic VDD is largely undetermined; existing studies are... more
Anecdotal reports suggest that increasing numbers of children in the UK are presenting with clinical manifestations of vitamin D deficiency (VDD). However, the epidemiology of symptomatic VDD is largely undetermined; existing studies are limited to local case series, and national incidence estimates of disease burden are lacking. To estimate the incidence of hypocalcaemic seizures secondary to VDD in children in the UK and Ireland, and describe the demographic and clinical features of cases. Prospective, population-based active surveillance study using the established British Paediatric Surveillance Unit (BPSU) methodology. Children aged 0-15 years, resident in the UK and Ireland, who developed a hypocalcaemic seizure due to VDD between September 2011 and September 2013. Overall incidence of hypocalcaemic seizures due to VDD in children age 0-15, and incidence stratified by age, sex, and ethnicity. Ninety one confirmed or probable cases were reported, equating to an overall annual incidence of 3.49 per million children age 0-15 years (95% CI: 2.81-4.26). Incidence was significantly greater in males compared to females, in infants compared to older children, and in children of South Asian or Black ethnicity compared to children from white ethnic backgrounds. Current implementation of public health policy in the UK is not successful in preventing children from developing one of the severe manifestations of VDD. Further studies are required to evaluate the epidemiology of symptomatic VDD more broadly in order to guide future public health policy decisions.
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In 2015, 9% of babies born in the UK were delivered underwater. Waterbirth is increasing in popularity, despite uncertainty regarding its safety for neonates. This systematic review and meta-analysis appraises the existing evidence for... more
In 2015, 9% of babies born in the UK were delivered underwater. Waterbirth is increasing in popularity, despite uncertainty regarding its safety for neonates. This systematic review and meta-analysis appraises the existing evidence for neonatal outcomes following waterbirth. A structured electronic database search was performed with no language restrictions. All comparative studies which reported neonatal outcomes following waterbirth, and that were published since 1995, were included. Quality appraisal was performed using a modified Critical Appraisal Skills Programme scoring system. The primary outcome was neonatal mortality. Data for each neonatal outcome were tabulated and analysed. Meta-analysis was performed for comparable studies which reported sufficient data. The majority of the 29 included studies were small, with limited follow-up and methodological flaws. They were mostly conducted in Europe and high-income countries. Reporting of data was heterogeneous. No significant d...
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To assess the quality of national Hospital Episode Statistics (HES) data for intussusception, and evaluate this routinely collected database for rotavirus vaccine safety surveillance by estimating pre-vaccination trends in intussusception... more
To assess the quality of national Hospital Episode Statistics (HES) data for intussusception, and evaluate this routinely collected database for rotavirus vaccine safety surveillance by estimating pre-vaccination trends in intussusception hospitalisation. Data linkage was performed between HES and prospective intussusception data from the British Paediatric Surveillance Unit (BPSU), followed by capture-recapture analysis to verify HES data quality. Inclusion criteria were infants aged less than 12 months and admitted for intussusception to National Health Service (NHS) hospitals in England from March 2008 to March 2009. To estimate pre-vaccination incidence rates of intussusception, we performed a retrospective analysis of HES data. Infants aged less than 12 months and admitted for intussusception to NHS hospitals in England between 1995 and 2009 were included. Data linkage between 254 cases of intussusception identified in HES data and 190 cases reported via the BPSU resulted in 163 cases common to both data sources. Of remaining 91 cases in HES, 37 had confirmed intussusception. HES data accuracy was 78.7% (200 confirmed/254 cases) and completeness for intussusception was 86% (163 matched/190 BPSU cases) compared to 81.5% (163 matched/200 HES cases) for BPSU. A total of 233 (95% CI: 227.4 to 238.8) intussusception cases were estimated for the infant population (2008 to 2009). For retrospective analysis, of 6462 intussusception admissions in HES data (1995 to 2009), 1594 (24.7%) were duplicate admissions. A declining trend in intussusception incidence was observed in the infant population, from 86/100,000 in 1997 to 34/100,000 in 2009 (60% reduction, P<0.001). Cosinor modelling showed an excess of cases among infants in winter and spring (P<0.001, n=4957, 1995 to 2009). National hospital data capture the majority of admissions for intussusception and should be considered for the post-implementation surveillance of rotavirus vaccine safety in England.
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SUMMARY Fertility treatments are enjoying increasing use around the world. As they intervene at such a sensitive time at the start of development, the effects of these treatments on children have been closely scrutinized, with generally... more
SUMMARY Fertility treatments are enjoying increasing use around the world. As they intervene at such a sensitive time at the start of development, the effects of these treatments on children have been closely scrutinized, with generally reassuring results. Reports of a possible slightly increased risk of acute leukemia (AL) in children born after assisted reproductive technology have been investigated by a series of studies. Research in this field could provide clues not only to the effects of different treatments, but perhaps also to the etiology of AL, which remains largely enigmatic. This special report investigates the evidence of a possible association specifically between childhood AL and assisted reproductive technology, and offers an outlook for the direction of this important field in the future.
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This is a revised and expanded edition of IVFChildren - The First Generation.
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In vitro fertilisation (IVF) and other assisted reproductive therapies (ART) offer hope to subfertile couples worldwide. At least 5 million ART children have been born to date. Their health is an issue that is increasingly relevant:... more
In vitro fertilisation (IVF) and other assisted reproductive therapies (ART) offer hope to subfertile couples worldwide. At least 5 million ART children have been born to date. Their health is an issue that is increasingly relevant: first, to those children and young adults themselves; second, to couples considering fertility treatment; and third, to the general population as ART has progressed from experimental treatment to routine practice. Many concerns about the potential risks to these children have been voiced with varying degrees of supportive evidence. This article summarises some key long-term data. Current evidence suggests that ART does increase risk of: higher order pregnancy (with its inherent pre- and perinatal risks); prematurity and low birth weight; congenital malformations in particular of the male urogenital system; imprinting disorders. Reassuringly, evidence points away from an increased overall cancer risk or differences in neurodevelopmental outcomes. Many unk...
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Anecdotal reports suggest that increasing numbers of children in the UK are presenting with clinical manifestations of vitamin D deficiency (VDD). However, the epidemiology of symptomatic VDD is largely undetermined; existing studies are... more
Anecdotal reports suggest that increasing numbers of children in the UK are presenting with clinical manifestations of vitamin D deficiency (VDD). However, the epidemiology of symptomatic VDD is largely undetermined; existing studies are limited to local case series, and national incidence estimates of disease burden are lacking. To estimate the incidence of hypocalcaemic seizures secondary to VDD in children in the UK and Ireland, and describe the demographic and clinical features of cases. Prospective, population-based active surveillance study using the established British Paediatric Surveillance Unit (BPSU) methodology. Children aged 0-15 years, resident in the UK and Ireland, who developed a hypocalcaemic seizure due to VDD between September 2011 and September 2013. Overall incidence of hypocalcaemic seizures due to VDD in children age 0-15, and incidence stratified by age, sex, and ethnicity. Ninety one confirmed or probable cases were reported, equating to an overall annual i...
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With an ever-expanding population of children born after in-vitro fertilisation (IVF), the widespread use of assisted reproductive techniques (ART) has placed a great emphasis on the need to study their long-term outcomes. Indeed, there... more
With an ever-expanding population of children born after in-vitro fertilisation (IVF), the widespread use of assisted reproductive techniques (ART) has placed a great emphasis on the need to study their long-term outcomes. Indeed, there has been concern that mechanisms used in ART may have a detrimental effect on the neurocognitive development of these children. Reassuringly, most neurocognitive and motor development studies using various assessment scales have generally found no differences between intracytoplasmic sperm injection, IVF and naturally conceived children. Only a few studies have reported concerns. In terms of predictors of intelligence in children, ART appears to have a minimal effect in comparison to birth weight, gestational age, socio-economic status, and parental educational levels. Nevertheless, further research of higher methodological quality in children beyond pre-school age and on newer ART procedures is needed.
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... MICHÈLE HANSEN, MPH CAROL BOWER, MB, BS, PH.D. University of Western Australia Perth 6009 ... 19104 gkovalevsky@hotmail.com 1. Schieve LA, Meikle SF, Ferre C, Peterson HB, Jeng G, Wilcox ... It would be interesting to know how many... more
... MICHÈLE HANSEN, MPH CAROL BOWER, MB, BS, PH.D. University of Western Australia Perth 6009 ... 19104 gkovalevsky@hotmail.com 1. Schieve LA, Meikle SF, Ferre C, Peterson HB, Jeng G, Wilcox ... It would be interesting to know how many clusters there were of each kind. ...
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In a non-matched case-control study using data from two large national cohort studies, we investigated whether indicators of child health and development up to 7 years of age differ between children conceived using assisted reproductive... more
In a non-matched case-control study using data from two large national cohort studies, we investigated whether indicators of child health and development up to 7 years of age differ between children conceived using assisted reproductive technology (ART), children born after sub-fertility (more than 24 months of trying for conception) and other children. Information on ART use/sub-fertility was available for 23,649 children. There were 227 cases (children conceived through ART) and two control groups: 783 children born to sub-fertile couples, and 22,639 children born to couples with no fertility issues. In models adjusted for social and demographic factors there were significant differences between groups in rate of hospital admissions before the children were 9 months old (P=0.029), with the ART group showing higher rates of hospital admission than the no fertility issues control group, the sub-fertile control group being intermediate between the two. Children born after ART had com...
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Initial reports about outcome of children conceived by ICSI have been reassuring,3, 4 apart from Kurinczuk and Bower's reanalysis of the Belgian data4 to assess the excess risk of developing defects in ICSI children. However,... more
Initial reports about outcome of children conceived by ICSI have been reassuring,3, 4 apart from Kurinczuk and Bower's reanalysis of the Belgian data4 to assess the excess risk of developing defects in ICSI children. However, Kurinczuk and Bower5 provided no information about ...