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We welcome the comments made by Professor Andrew Williams, who has been a great supporter of our UK-wide study of children with progressive intellectual and neurological deterioration (PIND). The PIND Study uses the mechanism provided by the British Paediatric Surveillance Unit (BPSU), which is based in the Royal College of Paediatrics and Child Health. Since 1986 the BPSU has provided paediatricians in the United Kingdom with the means of investigating rare disorders of childhood. As Professor Williams points out there is a need to make research central to good paediatric practice and the BPSU continues to facilitate that.
The PIND Study is funded by the National Institute for Health Research (NIHR) Policy Research Programme to look for cases of variant Creutzfeldt-Jakob disease (vCJD) among the many neurodegenerative diseases of childhood. Since the PIND Study started in 1997 we have identified children with more than 190 of these rare disorders - that number constantly increases as new diseases and new genetic variants of known diseases are discovered. Thus our study not only provides the sole means of systematically searching for vCJD in children but also gives a unique oversight of the changing pattern of childhood neurodegenerative disease in the UK. We work closely with the National Creutzfeldt-Jakob Disease Research and Surveillance Unit which carries out surveillance for vCJD in adults.
Professor Williams highlights the fact that our work could not be...
We welcome the comments made by Professor Andrew Williams, who has been a great supporter of our UK-wide study of children with progressive intellectual and neurological deterioration (PIND). The PIND Study uses the mechanism provided by the British Paediatric Surveillance Unit (BPSU), which is based in the Royal College of Paediatrics and Child Health. Since 1986 the BPSU has provided paediatricians in the United Kingdom with the means of investigating rare disorders of childhood. As Professor Williams points out there is a need to make research central to good paediatric practice and the BPSU continues to facilitate that.
The PIND Study is funded by the National Institute for Health Research (NIHR) Policy Research Programme to look for cases of variant Creutzfeldt-Jakob disease (vCJD) among the many neurodegenerative diseases of childhood. Since the PIND Study started in 1997 we have identified children with more than 190 of these rare disorders - that number constantly increases as new diseases and new genetic variants of known diseases are discovered. Thus our study not only provides the sole means of systematically searching for vCJD in children but also gives a unique oversight of the changing pattern of childhood neurodegenerative disease in the UK. We work closely with the National Creutzfeldt-Jakob Disease Research and Surveillance Unit which carries out surveillance for vCJD in adults.
Professor Williams highlights the fact that our work could not be carried out without the active support and involvement of the paediatricians who report cases to our study (and all the other studies that are carried out via the BPSU system). By giving their time in this way individual paediatricians become an active part of a highly successful national epidemiological surveillance system and their contribution should be acknowledged – many thanks to them all.
We thank Luamar Dolfini and Gabriella Williamson for noting the sepsis screening tool that we developed in Leeds. Our tool was based on the NICE guidance, but used local early warning scores (PAWS) to simplify the assessment risk for sepsis. At Leeds Children's Hospital our tool is used on all acute paediatric admissions and in any child that deteriorates on the paediatric wards. Since our initial letter was published in 2018, our team have further amended our screening tool in response to human factors work, and have introduced the acronym LEEDS (Look for sepsis is all acute admissions or children who deteriorate: Evaluate the risk of sepsis by completing the sepsis screening tool; Escalate to a senior decision maker to consider the risk of sepsis; Decide whether there is a high/medium/low risk of sepsis using clinical assessment and investigations such as lactate; Start antibiotics in under 60 minutes if sepsis is a possibility). Our team have found the paper by Roland and Snelson ("So why didn't you think this baby was ill?" Decision-making in acute paediatrics, Arch Dis Educ Pract Ed 2019; 104:43-48) invaluable in educating our team about making decisions and assessing risk and this e-letter highlights that all parts of the puzzle (e.g. a full and comprehensive set of observations) are essential in being able to appropriately risk stratify patients, including for sepsis.
This most welcome paper by Verity et al relates the important longstanding work that the PIND Study produces and which all paediatricians should most strongly continue to support.[1]
However, it is important for readers to understand that the PIND Study itself cannot in many cases be expected to be the full story when a child is referred to them.
Indeed the relationship between the referring paediatrician and the PIND Study group can very helpfully continue long after the patient's death when new investigative technologies can finally provide a definitive diagnosis, so long as the appropriate samples have been appropriately taken. In this area, I have found guidance from the PIND Study can be very helpful.
We in Northampton have always referred where appropriate to the PIND Study not only because we highly esteem its work, but also because it remains the only practical means of systemic surveillance of vCJD and other neurodegenerative conditions in the UK. Where inspite of every endeavour a diagnosis has not been found while the patient was alive, we in Northampton have continued to keep the PIND Study in the loop while working internationally with other groups to find an answer.
For one such example, we have had children 2 brothers both referred to the PIND study in the early 2000's with a then undiagnosed condition. Both boys, having had post mortems and DNA storage and working with Professor Baas in the Netherlands were found to hav...
This most welcome paper by Verity et al relates the important longstanding work that the PIND Study produces and which all paediatricians should most strongly continue to support.[1]
However, it is important for readers to understand that the PIND Study itself cannot in many cases be expected to be the full story when a child is referred to them.
Indeed the relationship between the referring paediatrician and the PIND Study group can very helpfully continue long after the patient's death when new investigative technologies can finally provide a definitive diagnosis, so long as the appropriate samples have been appropriately taken. In this area, I have found guidance from the PIND Study can be very helpful.
We in Northampton have always referred where appropriate to the PIND Study not only because we highly esteem its work, but also because it remains the only practical means of systemic surveillance of vCJD and other neurodegenerative conditions in the UK. Where inspite of every endeavour a diagnosis has not been found while the patient was alive, we in Northampton have continued to keep the PIND Study in the loop while working internationally with other groups to find an answer.
For one such example, we have had children 2 brothers both referred to the PIND study in the early 2000's with a then undiagnosed condition. Both boys, having had post mortems and DNA storage and working with Professor Baas in the Netherlands were found to have EXOSC3 mutation in 2012 (8 and 2 years after their deaths respectively). [1]
Being part of a team which maybe many years after that child's death that uncovers the cause, giving that family a reason and specifically a diagnostic test, can give great comfort and closure for all involved in that child's care. Readers of this article will be well aware that medically managing such children can present severe challenges, which even under the best possible care can lead to terrible physical and emotional suffering.
It is for paediatricians and child health professionals to continue to work with the PIND Study.It cannot be expected to shoulder the entire weight for this process. Coincidentally, the very same issue of the Archives has another article emphasising making research central to good paediatric practice.[3] I could not agree more.
References
1] Verity C, Winstone AM, Will R, et al. Surveillance for variant CJD: should more children with neurodegenerative diseases have autopsies?. Archives of Disease in Childhood 2019;104:360-365.
2] Eggens V.R.C., Barth P.G., Niermeijer J. F., Berg J.N., Darin N., Dixit A., Flus J., Foulds N., Hortobágyi T., Jacques T., King M.D., Makrythanasis P., Máté A., O'Rourke D., Price S., Williams A.N., Wilson L.,Suri M., Sztriha L., Dijns-de Wissel M.B., van Meegen M.T., van Ruissen F., Aronica E., Troost D., Majoie C.B.L.M., Marquering H.A.,Poll-Thé B-T, Baas F. EXOSC3 mutations in pontocerebellar hypoplasia type 1: novel mutations and genotype-phenotype correlations Orphanet Journal of Rare Diseases 2014 9:23. doi:10.1186/1750-1172-9-23.
3] Davies HT, Phillips B, Preston J, et al. Making research central to good paediatric practice. Archives of Disease in Childhood 2019;104:385-388.
Powell and Jeavons undertook a hospital-based audit(1) comparing the new guidelines for identifying paediatric sepsis(2) to previous cases that had attended the emergency department. By contrast, our recent sepsis audit investigating the assessment of under 5s with fever ≥37.5°C (before possible referral to hospital) was done in primary care.
The National Institute for Health and Care Excellence (NICE) guidelines for sepsis assessment outlines four signs that should be recorded: temperature, pulse, respiratory rate and capillary refill time. An initial audit looking at compliance to these guidelines was conducted looking at data in computerised records from May 2014 – May 2018 at an inner-city general practice. Results showed that in only 15% of 111 consecutive consultations with feverish children aged <5 were all four signs recorded. More specifically, pulse was recorded in 81%, respiratory rate in 49%, and capillary refill time in only 32% of consultations.
Following presentation of these findings to the general practitioners and practice nurses, a re-audit was undertaken assessing 48 consecutive consultations from June 2018 – June 2019. Results showed a slight improvement from 15% to 25% of consultations recording all four signs, with 94% of consultations recording pulse, 42% recording respiratory rate, and 50% recording capillary refill time.
Powell and Jeavons have now created a simple ED paediatric sepsis pathway to minimise unnecessary inv...
Powell and Jeavons undertook a hospital-based audit(1) comparing the new guidelines for identifying paediatric sepsis(2) to previous cases that had attended the emergency department. By contrast, our recent sepsis audit investigating the assessment of under 5s with fever ≥37.5°C (before possible referral to hospital) was done in primary care.
The National Institute for Health and Care Excellence (NICE) guidelines for sepsis assessment outlines four signs that should be recorded: temperature, pulse, respiratory rate and capillary refill time. An initial audit looking at compliance to these guidelines was conducted looking at data in computerised records from May 2014 – May 2018 at an inner-city general practice. Results showed that in only 15% of 111 consecutive consultations with feverish children aged <5 were all four signs recorded. More specifically, pulse was recorded in 81%, respiratory rate in 49%, and capillary refill time in only 32% of consultations.
Following presentation of these findings to the general practitioners and practice nurses, a re-audit was undertaken assessing 48 consecutive consultations from June 2018 – June 2019. Results showed a slight improvement from 15% to 25% of consultations recording all four signs, with 94% of consultations recording pulse, 42% recording respiratory rate, and 50% recording capillary refill time.
Powell and Jeavons have now created a simple ED paediatric sepsis pathway to minimise unnecessary investigations and identify children who need emergency interventions(1). Perhaps something similar is needed in primary care.
References
1. Powell R, Jeavons K. Identifying paediatric sepsis: the difficulties in following recommended practice and the creation of our own pathway. Archives of Disease in Childhood 2018;103:114.
2. National Institute for Health and Clinical Excellence. Fever in under 5s: assessment and initial management. 2018. Available from: https://www.nice.org.uk/guidance/cg160
We thank Dr Woodruff for the opportunity to ensure that the correct figure is being used for the burden of childhood blindness.
As indicated in a correction(1) published alongside our original article,(2) the correct figure for the estimate of the global burden of childhood blindness is 1.4 million children.
1. Solebo AL, Teoh L, Rahi J. Correction: Epidemiology of blindness in children Archives of Disease in Childhood 2017;102:995
2. Solebo AL, Teoh L, Rahi J. Epidemiology of blindness in children Archives of Disease in Childhood 2017;102:853-857
We thank Professor Connett for his ornithological expertise, the extent of which we had not previously realised. There is indeed a wealth of literature about psychological stress to mothers affecting foetal outcomes [1], and stress being associated with asthma attacks [2] and worsening the effects of allergen challenge [3], and the importance of addressing this is emphasised by ourselves and many others [4]. Acknowledging this in no way contradicts the need also to address refractory airway pathology by the reductionist approach we advocate [5]. A holistic approach to severe asthma deploying the skills of a multidisciplinary team is essential. Render unto Caesar the things that are Caeser’s.
Andrew Bush
Ian Pavord
References
1. Wright RJ, Visness CM, Calatroni A, Grayson MH, Gold DR, Sandel MT, et al. Prenatal maternal stress and cord blood innate and adaptive cytokine responses in an inner-city cohort. Am J Respir Crit Care Med. 2010; 182: 25-33.
2. Sandberg S, Paton JY, Ahola S, McCann DC, McGuinness D, Hillary CR, Oja H. The role of acute and chronic stress in asthma attacks in children. Lancet. 2000; 356: 982-7.
3. Liu LY, Coe CL, Swenson CA, Kelly EA, Kita H, Busse WW. School examinations enhance airway inflammation to antigen challenge. Am J Respir Crit Care Med. 2002; 165: 1062-7.
4. Cook J, Beresford F, Fainardi V, Hall P, Housley G, Jamalzadeh A, Nightingale M, Winch D, Bush A, Fleming L, Saglani S. Managing the paediatr...
We thank Professor Connett for his ornithological expertise, the extent of which we had not previously realised. There is indeed a wealth of literature about psychological stress to mothers affecting foetal outcomes [1], and stress being associated with asthma attacks [2] and worsening the effects of allergen challenge [3], and the importance of addressing this is emphasised by ourselves and many others [4]. Acknowledging this in no way contradicts the need also to address refractory airway pathology by the reductionist approach we advocate [5]. A holistic approach to severe asthma deploying the skills of a multidisciplinary team is essential. Render unto Caesar the things that are Caeser’s.
Andrew Bush
Ian Pavord
References
1. Wright RJ, Visness CM, Calatroni A, Grayson MH, Gold DR, Sandel MT, et al. Prenatal maternal stress and cord blood innate and adaptive cytokine responses in an inner-city cohort. Am J Respir Crit Care Med. 2010; 182: 25-33.
2. Sandberg S, Paton JY, Ahola S, McCann DC, McGuinness D, Hillary CR, Oja H. The role of acute and chronic stress in asthma attacks in children. Lancet. 2000; 356: 982-7.
3. Liu LY, Coe CL, Swenson CA, Kelly EA, Kita H, Busse WW. School examinations enhance airway inflammation to antigen challenge. Am J Respir Crit Care Med. 2002; 165: 1062-7.
4. Cook J, Beresford F, Fainardi V, Hall P, Housley G, Jamalzadeh A, Nightingale M, Winch D, Bush A, Fleming L, Saglani S. Managing the paediatric patient with refractory asthma: a multidisciplinary approach. Journal of Asthma and Allergy 2017; 10: 123-30
5. Pavord ID, Beasley R, Agusti A, Anderson GP, Bel E, Brusselle G, et al. After asthma – redefining airways diseases. A Lancet commission. Lancet 2018; 391: 350-400
Re: Professor Andrew N Williams’ letter to ADC “Failing to consider Virtual Academic Units within UK infrastructure for research that benefits infants, children and young people”
We were pleased to hear the success of the Virtual Academic Unit and invited Professor Andrew Williams to contribute to the RCPCH research bulletin of March 2019.
At the RCPCH, we know from our research and from speaking to our membership, that paediatricians around the country have little or no allocated funding or designated research time. We, therefore, applaud all those paediatricians who continue to go above and beyond to undertake research to achieve better health outcomes for children and young people.
The RCPCH is fully committed to strengthening basic science and clinical research and the development of devices, medicines and technologies that address the needs of children. Furthermore, our committment includes supporting our members and growing and promoting opportunities for research within paediatrician’s careers.
We will continue to work with our partners across the UK to influence, promote and grow child health research.
Lindsey Hunter, Research Development Manager, RCPCH
Professor Anne Greenough, immediate past Vice President Science and Research, RCPCH and Professor of Neonatology and Clinical Respiratory Physiology, King's College London
Dear Professor Davendralingam Sinniah Paediatrician
In response to your letter. We agree with you patient safety comes first in all age groups.
1. Tramadol is not a full agonist opioid. The issue that we have highlighted with tramadol (and codeine) is when the patient is a CYP2D6 ultrametaboliser there is potential for serious adverse events. The CYP2D6 issue is not at play for the alternative pure opioid agonists oxycodone and morphine (the latter as you suggested). However all these agents have potentially serious adverse effects, including sedation, respiratory depression (in therapeutic doses) and fatality (usually in excessive dosing or at risk patients).
2. We agree with you that the simple non-opioid analgesics (paracetamol and NSAIDs when not contraindicated) are preferred. We are advocating for tramadol when stronger analgesia is required as a 3rd line alternative to the pure opioid agonists. We each work in tertiary centres where tramadol is used: one a women’s hospital where it is used perioperatively post caesarean and vaginal delivery; and the others where is is used off label in children of all ages (including infants).
3. There are few data concerning respiratory depression and tramadol in neonates. However concentrations in breast fed neonates are low and not expected to cause respiratory depression after usual doses.
4. Please point to evidence in the literature that tramadol administered to women who are breastfeeding cause...
Dear Professor Davendralingam Sinniah Paediatrician
In response to your letter. We agree with you patient safety comes first in all age groups.
1. Tramadol is not a full agonist opioid. The issue that we have highlighted with tramadol (and codeine) is when the patient is a CYP2D6 ultrametaboliser there is potential for serious adverse events. The CYP2D6 issue is not at play for the alternative pure opioid agonists oxycodone and morphine (the latter as you suggested). However all these agents have potentially serious adverse effects, including sedation, respiratory depression (in therapeutic doses) and fatality (usually in excessive dosing or at risk patients).
2. We agree with you that the simple non-opioid analgesics (paracetamol and NSAIDs when not contraindicated) are preferred. We are advocating for tramadol when stronger analgesia is required as a 3rd line alternative to the pure opioid agonists. We each work in tertiary centres where tramadol is used: one a women’s hospital where it is used perioperatively post caesarean and vaginal delivery; and the others where is is used off label in children of all ages (including infants).
3. There are few data concerning respiratory depression and tramadol in neonates. However concentrations in breast fed neonates are low and not expected to cause respiratory depression after usual doses.
4. Please point to evidence in the literature that tramadol administered to women who are breastfeeding causes adverse neonatal effects such as excessive sleepiness, difficulty breathing, and fatal breathing problems. Patient safety is always foremost in our minds but we could find little evidence of these adverse effects. Further we present pharmacokinetic evidence as to why that is unlikely
5. You present warnings, not evidence, concerning these complications, like the FDA, AAP and ACOGs conservative and reactive stance. We acknowledge your concerns. Please note that our editorial was a consequence of these warnings that we felt were unjustified. That was the point of the review.
We wish to advocate for pain relief in postpartum mothers who have moderate to severe pain and require analgesic escalation beyond the acetaminophen and nsNSAID. The emphasis from a safety perspective, as you have suggested, is that opioid agonists and tramadol should be prescribed at the lowest effective dose and for the shortest time possible. Sensible advice should be provided to all patients receiving opioid and tramadol scripts at discharge including breastfeeding mothers.
Greta M Palmer1, Brian J Anderson2, David K Linscott3, Michael J Paech4,5, Karel Allegaert6,7
affiliations as per primary article
I was deeply surprised that this leading paper in citing the 2018 ‘Turning the tide 5 years on’ does not mention ‘virtual Biomedical Research Units and Centres’ (1,2). The establishment of such centres had been specifically recommended in the seminal 2012 RCPCH Report ‘Turning the Tide: Harnessing the power of child health research’ (3).
We in Northampton established a Virtual Academic Unit (VAU) in 2004, and published our experience of its first 10 years experience in Archives in 2015 (4).
Among the articles published through the VAU there is ‘Ethical Research Involving Children.’ (2013) UNICEF, which predates the College own Children’s and Young People’s Child Health Research Charter. (5)
The Virtual Academic Unit is continuing to collaborate on and publish in clinical child health research to this day. (6) However, it has remained totally unfunded with no allocated research time in spite of every possible endeavour to address this.
We have to be pragmatic and recognise that with present and future increasing pressures within the NHS having any research time within a job plan is seen by most NHS managers as an unproductive luxury given the immediate pressing necessities of delivering a clinical service.
As my 2015 article relates
‘A VAU has its place and in a present and future environment where resources are continuing to be constrained, a method of working that allows something meaningful to be produced, from where previousl...
I was deeply surprised that this leading paper in citing the 2018 ‘Turning the tide 5 years on’ does not mention ‘virtual Biomedical Research Units and Centres’ (1,2). The establishment of such centres had been specifically recommended in the seminal 2012 RCPCH Report ‘Turning the Tide: Harnessing the power of child health research’ (3).
We in Northampton established a Virtual Academic Unit (VAU) in 2004, and published our experience of its first 10 years experience in Archives in 2015 (4).
Among the articles published through the VAU there is ‘Ethical Research Involving Children.’ (2013) UNICEF, which predates the College own Children’s and Young People’s Child Health Research Charter. (5)
The Virtual Academic Unit is continuing to collaborate on and publish in clinical child health research to this day. (6) However, it has remained totally unfunded with no allocated research time in spite of every possible endeavour to address this.
We have to be pragmatic and recognise that with present and future increasing pressures within the NHS having any research time within a job plan is seen by most NHS managers as an unproductive luxury given the immediate pressing necessities of delivering a clinical service.
As my 2015 article relates
‘A VAU has its place and in a present and future environment where resources are continuing to be constrained, a method of working that allows something meaningful to be produced, from where previously nothing could be expected at all. …Some realistic mechanism translating into sustained funding for VAUs would be very helpful.’ (4)
2 Hunter L, Greenough A, Modi N . Turning the tide 5 years on. London: Royal College of Paediatrics and Child Health, 2018.
3 Royal College of Paediatrics and Child Health. Turning the Tide: Harnessing the power of child health research. RCPCH, 2012. http://www.rcpch.ac.uk/system/files/protected/page/
Turning%20the%20Tide%20Full%20Report.pdf
4 Williams A.N. A Virtual Academic Unit – the first 10 years. Arch Dis Child Educ Pract 2015; 100(3):164-5
5 Williams AN. Facilitating future benefit when a participant has a degenerative illness and cannot give consent. In: Graham A, Powell M, Taylor N, et al., eds. Ethical research involving
children. Florence: UNICEF Office of Research—Innocenti, 2013:118–9. http://childethics.com/wp-content/uploads/2013/11/ERIC_Compendium_Case-S...
6 Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016
Global Research on Developmental Disabilities Collaborators* Lancet Global Health 2018 http://dx.doi.org/10.1016/S2214-109X(18)30309-7
We commend the DEPICT group for gathering evidence to support or refute the current set of performance standards for specialist paediatric intensive care retrieval teams (PICRTs), for which there is currently limited evidence base.
A key tenet of ‘the paper’ was geographical distance as the sole reason for a breach in the 180 minute to bedside standard.[1] In our experience, the commonest reason to breach was ‘team availability’. In 2018 South Thames Retrieval Service (STRS) performed 824 emergency retrievals. In 4% of these, the team did not reach the bedside within 180 minutes. On 33/36 occasions, the reason for delay was lack of availability of retrieval team due to concurrent deployment.
STRS is commissioned to staff two teams on every shift. In 2018 32% of retrievals were performed concurrently. STRS is the second busiest PICRT in the UK, however on 29 % of shifts, no retrieval team was launched. STRS is a fully integrated retrieval service –all staff are based in the intensive care unit, and when not on retrieval work clinically in the PICU. This allows flexible staffing and in times of high demand, helps support increased PICU bed capacity. In 2018, 98.8% of patients were kept within region.
The authors highlight the importance of mobilisation time. Despite the integration of our service within a busy PICU, STRS recorded the highest national compliance with the mobilisation standard for 2017.[2]
We commend the DEPICT group for gathering evidence to support or refute the current set of performance standards for specialist paediatric intensive care retrieval teams (PICRTs), for which there is currently limited evidence base.
A key tenet of ‘the paper’ was geographical distance as the sole reason for a breach in the 180 minute to bedside standard.[1] In our experience, the commonest reason to breach was ‘team availability’. In 2018 South Thames Retrieval Service (STRS) performed 824 emergency retrievals. In 4% of these, the team did not reach the bedside within 180 minutes. On 33/36 occasions, the reason for delay was lack of availability of retrieval team due to concurrent deployment.
STRS is commissioned to staff two teams on every shift. In 2018 32% of retrievals were performed concurrently. STRS is the second busiest PICRT in the UK, however on 29 % of shifts, no retrieval team was launched. STRS is a fully integrated retrieval service –all staff are based in the intensive care unit, and when not on retrieval work clinically in the PICU. This allows flexible staffing and in times of high demand, helps support increased PICU bed capacity. In 2018, 98.8% of patients were kept within region.
The authors highlight the importance of mobilisation time. Despite the integration of our service within a busy PICU, STRS recorded the highest national compliance with the mobilisation standard for 2017.[2]
In our region 90% of intubations are performed by the referring team. The integrated PICU- PICRT model allows all staff to remain proficient in practical skills required for retrieval but infrequently performed during transfer.
An additional benefit of co-location of services is the reduction in re-deployment time when a patient returns to the base PICU. Co-location in the busiest receiving units would allow maximum benefit from this time saving and should be considered in future analyses.
We agree with the authors and acknowledge PICRT as an expensive resource. We suggest therefore that the most flexible, practical, financially viable team utilisation models need to be considered in any service redesign. As well as co-location with a PICU, we argue for greater integration of the teams within the PICUs themselves.
1. King M, Ramnarayan P, Seaton SE et al Modelling the allocation of paediatric intensive care retrieval teams in England and Wales. Archives of disease in Childhood Published online First: 11 February 2019.
2. Paediatric Intensive Care Audit Network Annual Report 2017 (published November 2017): Universities of Leeds and Leicester.
We welcome the comments made by Professor Andrew Williams, who has been a great supporter of our UK-wide study of children with progressive intellectual and neurological deterioration (PIND). The PIND Study uses the mechanism provided by the British Paediatric Surveillance Unit (BPSU), which is based in the Royal College of Paediatrics and Child Health. Since 1986 the BPSU has provided paediatricians in the United Kingdom with the means of investigating rare disorders of childhood. As Professor Williams points out there is a need to make research central to good paediatric practice and the BPSU continues to facilitate that.
Show MoreThe PIND Study is funded by the National Institute for Health Research (NIHR) Policy Research Programme to look for cases of variant Creutzfeldt-Jakob disease (vCJD) among the many neurodegenerative diseases of childhood. Since the PIND Study started in 1997 we have identified children with more than 190 of these rare disorders - that number constantly increases as new diseases and new genetic variants of known diseases are discovered. Thus our study not only provides the sole means of systematically searching for vCJD in children but also gives a unique oversight of the changing pattern of childhood neurodegenerative disease in the UK. We work closely with the National Creutzfeldt-Jakob Disease Research and Surveillance Unit which carries out surveillance for vCJD in adults.
Professor Williams highlights the fact that our work could not be...
We thank Luamar Dolfini and Gabriella Williamson for noting the sepsis screening tool that we developed in Leeds. Our tool was based on the NICE guidance, but used local early warning scores (PAWS) to simplify the assessment risk for sepsis. At Leeds Children's Hospital our tool is used on all acute paediatric admissions and in any child that deteriorates on the paediatric wards. Since our initial letter was published in 2018, our team have further amended our screening tool in response to human factors work, and have introduced the acronym LEEDS (Look for sepsis is all acute admissions or children who deteriorate: Evaluate the risk of sepsis by completing the sepsis screening tool; Escalate to a senior decision maker to consider the risk of sepsis; Decide whether there is a high/medium/low risk of sepsis using clinical assessment and investigations such as lactate; Start antibiotics in under 60 minutes if sepsis is a possibility). Our team have found the paper by Roland and Snelson ("So why didn't you think this baby was ill?" Decision-making in acute paediatrics, Arch Dis Educ Pract Ed 2019; 104:43-48) invaluable in educating our team about making decisions and assessing risk and this e-letter highlights that all parts of the puzzle (e.g. a full and comprehensive set of observations) are essential in being able to appropriately risk stratify patients, including for sepsis.
This most welcome paper by Verity et al relates the important longstanding work that the PIND Study produces and which all paediatricians should most strongly continue to support.[1]
However, it is important for readers to understand that the PIND Study itself cannot in many cases be expected to be the full story when a child is referred to them.
Indeed the relationship between the referring paediatrician and the PIND Study group can very helpfully continue long after the patient's death when new investigative technologies can finally provide a definitive diagnosis, so long as the appropriate samples have been appropriately taken. In this area, I have found guidance from the PIND Study can be very helpful.
We in Northampton have always referred where appropriate to the PIND Study not only because we highly esteem its work, but also because it remains the only practical means of systemic surveillance of vCJD and other neurodegenerative conditions in the UK. Where inspite of every endeavour a diagnosis has not been found while the patient was alive, we in Northampton have continued to keep the PIND Study in the loop while working internationally with other groups to find an answer.
For one such example, we have had children 2 brothers both referred to the PIND study in the early 2000's with a then undiagnosed condition. Both boys, having had post mortems and DNA storage and working with Professor Baas in the Netherlands were found to hav...
Show MorePowell and Jeavons undertook a hospital-based audit(1) comparing the new guidelines for identifying paediatric sepsis(2) to previous cases that had attended the emergency department. By contrast, our recent sepsis audit investigating the assessment of under 5s with fever ≥37.5°C (before possible referral to hospital) was done in primary care.
The National Institute for Health and Care Excellence (NICE) guidelines for sepsis assessment outlines four signs that should be recorded: temperature, pulse, respiratory rate and capillary refill time. An initial audit looking at compliance to these guidelines was conducted looking at data in computerised records from May 2014 – May 2018 at an inner-city general practice. Results showed that in only 15% of 111 consecutive consultations with feverish children aged <5 were all four signs recorded. More specifically, pulse was recorded in 81%, respiratory rate in 49%, and capillary refill time in only 32% of consultations.
Following presentation of these findings to the general practitioners and practice nurses, a re-audit was undertaken assessing 48 consecutive consultations from June 2018 – June 2019. Results showed a slight improvement from 15% to 25% of consultations recording all four signs, with 94% of consultations recording pulse, 42% recording respiratory rate, and 50% recording capillary refill time.
Powell and Jeavons have now created a simple ED paediatric sepsis pathway to minimise unnecessary inv...
Show MoreWe thank Dr Woodruff for the opportunity to ensure that the correct figure is being used for the burden of childhood blindness.
As indicated in a correction(1) published alongside our original article,(2) the correct figure for the estimate of the global burden of childhood blindness is 1.4 million children.
1. Solebo AL, Teoh L, Rahi J. Correction: Epidemiology of blindness in children Archives of Disease in Childhood 2017;102:995
2. Solebo AL, Teoh L, Rahi J. Epidemiology of blindness in children Archives of Disease in Childhood 2017;102:853-857
We thank Professor Connett for his ornithological expertise, the extent of which we had not previously realised. There is indeed a wealth of literature about psychological stress to mothers affecting foetal outcomes [1], and stress being associated with asthma attacks [2] and worsening the effects of allergen challenge [3], and the importance of addressing this is emphasised by ourselves and many others [4]. Acknowledging this in no way contradicts the need also to address refractory airway pathology by the reductionist approach we advocate [5]. A holistic approach to severe asthma deploying the skills of a multidisciplinary team is essential. Render unto Caesar the things that are Caeser’s.
Andrew Bush
Ian Pavord
References
Show More1. Wright RJ, Visness CM, Calatroni A, Grayson MH, Gold DR, Sandel MT, et al. Prenatal maternal stress and cord blood innate and adaptive cytokine responses in an inner-city cohort. Am J Respir Crit Care Med. 2010; 182: 25-33.
2. Sandberg S, Paton JY, Ahola S, McCann DC, McGuinness D, Hillary CR, Oja H. The role of acute and chronic stress in asthma attacks in children. Lancet. 2000; 356: 982-7.
3. Liu LY, Coe CL, Swenson CA, Kelly EA, Kita H, Busse WW. School examinations enhance airway inflammation to antigen challenge. Am J Respir Crit Care Med. 2002; 165: 1062-7.
4. Cook J, Beresford F, Fainardi V, Hall P, Housley G, Jamalzadeh A, Nightingale M, Winch D, Bush A, Fleming L, Saglani S. Managing the paediatr...
Dear Editor,
Re: Professor Andrew N Williams’ letter to ADC “Failing to consider Virtual Academic Units within UK infrastructure for research that benefits infants, children and young people”
We were pleased to hear the success of the Virtual Academic Unit and invited Professor Andrew Williams to contribute to the RCPCH research bulletin of March 2019.
At the RCPCH, we know from our research and from speaking to our membership, that paediatricians around the country have little or no allocated funding or designated research time. We, therefore, applaud all those paediatricians who continue to go above and beyond to undertake research to achieve better health outcomes for children and young people.
The RCPCH is fully committed to strengthening basic science and clinical research and the development of devices, medicines and technologies that address the needs of children. Furthermore, our committment includes supporting our members and growing and promoting opportunities for research within paediatrician’s careers.
We will continue to work with our partners across the UK to influence, promote and grow child health research.
Lindsey Hunter, Research Development Manager, RCPCH
Professor Anne Greenough, immediate past Vice President Science and Research, RCPCH and Professor of Neonatology and Clinical Respiratory Physiology, King's College London
Dear Professor Davendralingam Sinniah Paediatrician
Show MoreIn response to your letter. We agree with you patient safety comes first in all age groups.
1. Tramadol is not a full agonist opioid. The issue that we have highlighted with tramadol (and codeine) is when the patient is a CYP2D6 ultrametaboliser there is potential for serious adverse events. The CYP2D6 issue is not at play for the alternative pure opioid agonists oxycodone and morphine (the latter as you suggested). However all these agents have potentially serious adverse effects, including sedation, respiratory depression (in therapeutic doses) and fatality (usually in excessive dosing or at risk patients).
2. We agree with you that the simple non-opioid analgesics (paracetamol and NSAIDs when not contraindicated) are preferred. We are advocating for tramadol when stronger analgesia is required as a 3rd line alternative to the pure opioid agonists. We each work in tertiary centres where tramadol is used: one a women’s hospital where it is used perioperatively post caesarean and vaginal delivery; and the others where is is used off label in children of all ages (including infants).
3. There are few data concerning respiratory depression and tramadol in neonates. However concentrations in breast fed neonates are low and not expected to cause respiratory depression after usual doses.
4. Please point to evidence in the literature that tramadol administered to women who are breastfeeding cause...
I was deeply surprised that this leading paper in citing the 2018 ‘Turning the tide 5 years on’ does not mention ‘virtual Biomedical Research Units and Centres’ (1,2). The establishment of such centres had been specifically recommended in the seminal 2012 RCPCH Report ‘Turning the Tide: Harnessing the power of child health research’ (3).
We in Northampton established a Virtual Academic Unit (VAU) in 2004, and published our experience of its first 10 years experience in Archives in 2015 (4).
Among the articles published through the VAU there is ‘Ethical Research Involving Children.’ (2013) UNICEF, which predates the College own Children’s and Young People’s Child Health Research Charter. (5)
The Virtual Academic Unit is continuing to collaborate on and publish in clinical child health research to this day. (6) However, it has remained totally unfunded with no allocated research time in spite of every possible endeavour to address this.
We have to be pragmatic and recognise that with present and future increasing pressures within the NHS having any research time within a job plan is seen by most NHS managers as an unproductive luxury given the immediate pressing necessities of delivering a clinical service.
As my 2015 article relates
‘A VAU has its place and in a present and future environment where resources are continuing to be constrained, a method of working that allows something meaningful to be produced, from where previousl...
Show MoreWe commend the DEPICT group for gathering evidence to support or refute the current set of performance standards for specialist paediatric intensive care retrieval teams (PICRTs), for which there is currently limited evidence base.
A key tenet of ‘the paper’ was geographical distance as the sole reason for a breach in the 180 minute to bedside standard.[1] In our experience, the commonest reason to breach was ‘team availability’. In 2018 South Thames Retrieval Service (STRS) performed 824 emergency retrievals. In 4% of these, the team did not reach the bedside within 180 minutes. On 33/36 occasions, the reason for delay was lack of availability of retrieval team due to concurrent deployment.
STRS is commissioned to staff two teams on every shift. In 2018 32% of retrievals were performed concurrently. STRS is the second busiest PICRT in the UK, however on 29 % of shifts, no retrieval team was launched. STRS is a fully integrated retrieval service –all staff are based in the intensive care unit, and when not on retrieval work clinically in the PICU. This allows flexible staffing and in times of high demand, helps support increased PICU bed capacity. In 2018, 98.8% of patients were kept within region.
The authors highlight the importance of mobilisation time. Despite the integration of our service within a busy PICU, STRS recorded the highest national compliance with the mobilisation standard for 2017.[2]
In our region 90% of intubations are p...
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