Professor of Paediatrics, UCL.Clinician scientist and trialist. Inventor of medicines. Consultant Paediatrician. Consultancy for Pharma Industry. Medicolegal Expert
Background Care coordination is considered important for patients with rare conditions, yet resea... 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...
To investigate the risks of ovarian, breast, and corpus uteri cancer in women who have had assist... 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...
Acta paediatrica (Oslo, Norway : 1992), Jan 31, 2018
The diagnosis of tongue-tie (or ankyloglossia) has increased more than 10-fold in some countries.... 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 (...
ABSTRACT A total of 91 children (68 singletons, 20 twins and three triplets) who were conceived f... 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.
A mobile app may increase the reporting of adverse drug reactions (ADRs) and improve the communic... 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...
... Sutcliffe, AG and Samad, L and Bashir, HE and Marven, S and Cameron, JC and Taylor, B (2010) ... 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 ...
ABSTRACT Journal English Article LANCET LTD JUN 15 562JX LONDON LANCET 84 THEOBALDS RD, LONDON WC... more ABSTRACT Journal English Article LANCET LTD JUN 15 562JX LONDON LANCET 84 THEOBALDS RD, LONDON WC1X 8RR, ENGLAND
The Journal of Clinical Endocrinology Metabolism, Oct 3, 2014
Anecdotal reports suggest that increasing numbers of children in the UK are presenting with clini... 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.
Archives of disease in childhood. Fetal and neonatal edition, Jan 28, 2016
In 2015, 9% of babies born in the UK were delivered underwater. Waterbirth is increasing in popul... 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...
Background Care coordination is considered important for patients with rare conditions, yet resea... 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...
To investigate the risks of ovarian, breast, and corpus uteri cancer in women who have had assist... 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...
Acta paediatrica (Oslo, Norway : 1992), Jan 31, 2018
The diagnosis of tongue-tie (or ankyloglossia) has increased more than 10-fold in some countries.... 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 (...
ABSTRACT A total of 91 children (68 singletons, 20 twins and three triplets) who were conceived f... 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.
A mobile app may increase the reporting of adverse drug reactions (ADRs) and improve the communic... 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...
... Sutcliffe, AG and Samad, L and Bashir, HE and Marven, S and Cameron, JC and Taylor, B (2010) ... 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 ...
ABSTRACT Journal English Article LANCET LTD JUN 15 562JX LONDON LANCET 84 THEOBALDS RD, LONDON WC... more ABSTRACT Journal English Article LANCET LTD JUN 15 562JX LONDON LANCET 84 THEOBALDS RD, LONDON WC1X 8RR, ENGLAND
The Journal of Clinical Endocrinology Metabolism, Oct 3, 2014
Anecdotal reports suggest that increasing numbers of children in the UK are presenting with clini... 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.
Archives of disease in childhood. Fetal and neonatal edition, Jan 28, 2016
In 2015, 9% of babies born in the UK were delivered underwater. Waterbirth is increasing in popul... 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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