Displaying 1-10 letters out of 1340 published
Re: The value of Child Death Overview Panels (CDOP) remains unproven
Value for money
We endorse the sentiments expressed by Mecrow and O'Connor, and acknowledge the concerns they raise. As emphasised in our paper, there is currently a lack of evidence for the efficacy, efficiency and effectiveness of the child death review process. However, we would argue that the value of the CDOP process is not predicated on a demonstrable reduction in mortality alone.
While demonstrating a reduction in mortality secondary to CDOP interventions may be beyond the scope of any individual panel, it is possible that the process of child death review delivers a range of other benefits such as promoting wellbeing and reducing morbidity. This does not negate the need for a comprehensive evaluation as the essence of the issue is not whether CDOPs deliver valuable outcomes but whether they deliver good value for money in an economically constrained service.
The lines of accountability for CDOPs should be reviewed and improved so that, for example, recommendations for improving perinatal care are not rooted through a Local Children's Safeguarding Board. We completely agree that national aggregation and analysis of data is the most obvious vehicle for starting to deliver a reduction in mortality and its absence compounds any poor return for resources invested. Nationwide collation should be combined with the capacity to both review effectiveness evidence for interventions to tackle contributory factors and make recommendations for national programmes where appropriate.
Joining with our colleagues we reiterate our call for national collation and analysis of data to derive maximum benefit from the process, and for a more rigorous evaluation that recognises broader outcomes than mortality alone.
Dr Luke Allen (corresponding author) Dr Simon Lenton Dr James Fraser Dr Peter Sidebotham
Conflict of Interest:
Cultural awareness; small volumes of blood for culture cause under-detection of invasive infections
We read with interest your article demonstrating surprisingly low levels of culture-confirmed invasive bacterial infections in children. Whilst we agree better strategies are needed for separating low risk, febrile children from those with invasive-infections, we believe there is another significant factor contributing to their apparent low rates.
Large studies demonstrate that blood-culture volumes are frequently inadequate in children. It is well documented that the most significant factor in yielding an organism from culture is the volume of blood sampled.[3, 4] Insufficient volumes lead to large numbers of false- negatives, and it is estimated that 50% of cultures taken from children are of inadequate volume.
We audited blood-culture volumes locally, analysing 66 patient samples (target volumes from previous studies ). We documented an overall compliance of 33%. Significantly this included 0% compliance in the >10yr age-group (N=11). Similar volumes were taken from 14 year- olds as 1 month-olds (Mean 1.92ml vs 1.00ml respectively), despite the >10-fold difference in circulating volume and haemodilutionary effect on bacterial concentrations. From our intervention we learned this was largely due to a lack of education of how much blood was necessary from different sized children. Better education is clearly needed.
Your article mentions standard practice taking "at least 1 - 2ml blood", however for at least the >6000 tests performed in the 5-15 year-olds, 1-2ml of blood would be insufficient to produce a reliable result. Recent recommendations even suggest for children >36kg, an adult regime of cultures should be performed (40-60ml).
Even taking into account "modern technologies [making] blood volumes less problematic" our audit shows many clinicians remain unaware how much blood it is necessary to take. Considering that children remain difficult to venesect due to their small veins and poor compliance, the positive yield of blood-cultures is certain to underestimate the true number of invasive-infections in children.
1. Le Doare K, Nichols A-L, Payne H, et al. Very low rates of culture -confirmed invasive bacterial infections in a prospective 3-year population-based surveillance in Southwest London. Arch Dis Child Published Online First: February 19th 2014. doi:10.1136/archdischild-2013- 305565
2. Connell TG, Rele M, Cowley D, Buttery JP, Curtis N, How reliable is a negative blood culture result? Volume of blood submitted for culture in routine practice in a children's hospital, Pediatrics. 2007;119(5):891.
3. Mermel LA, Maki DG, Detection of bacteremia in adults: consequences of culturing an inadequate volume of blood, Ann Intern Med. 1993;119(4):270.
4. Ilstrup DM, Washington JA 2nd.The importance of volume of blood cultured in the detection of bacteremia and fungemia. Diagn Microbiol Infect Dis. 1983;1(2):107
5. Ellen Jo Baron et al, A guide to utilization of the microbiology laboratory for diagnosis of infectious diseases: 2013 recommendations by the Infectious Diseases Society of America (IDSA) and the American Society for Microbiology, Clinical Infectious Diseases, 2013 Aug; 57 (4) : e22- e121.
Conflict of Interest:
The value of Child Death Overview Panels (CDOP) remains unproven
Allen et al (1) are to be congratulated in reporting the first attempt to quantify the efficacy and impact of Child Death Overview Panels (CDOP) in the UK. They note that Paediatricians contributing to the workings of the panel are of the view that the panels function well with 71% of responders agreeing or agreeing strongly that they offer good value. However, the nature of the study may have involved significant bias as participating Paediatricians were asked to consider a number of variables where responses were subjective and, because those involved in the survey are members of CDOP panels, there may have been an inappropriately positive view of the impact and importance of the process. Strikingly, only 27% of respondents in the survey identified the prevention of future child deaths as the most important function of the process.
The authors acknowledge that a lack of aggregated National data compromise efficacy of the panels and cite sources indicating that the cost of introducing the panels across the UK is of the order of ?53 million. As past (IKM) and current (LOC) members of the CDOP panel we would agree that any value associated with the process remains unclear.
The lack of objective or measurable outcomes hampers any assessment and it might be argued that the CDOP process could only be seen to work and offer value for the considerable investment, if a reduction in childhood mortality could be demonstrated. Our experience, which dates from the inception of the CDOP process, is that very many hours are spent reviewing cases where there are very good medical reasons accounting for the vast majority of deaths. Few deaths are identified as having been predominantly due to modifiable factors and a large proportion of the modifiable factors that are identified are already the subject of major public health campaigns; for example, co-sleeping and smoking in pregnancy. Further, we have been concerned that the processes of Coronial review through Inquest and Serious Case Review overlap very significantly with the CDOP process - an unnecessary duplication of effort.
We would agree that the lack of aggregated National or Regional data render any analysis of childhood deaths almost impossible. An individual CDOP cannot know whether there is an excess mortality due to any particular cause. This effectively precludes the institution of actions to remedy service failings at a local level. Attempts to address this are in progress. For example, in Greater Manchester, the Chairs of a number of CDOPs have met to explore whether regional aggregation of data might assist in identifying trends and areas of good or poor service provision. Because the numbers of childhood deaths by cause are relatively small even this approach is a poor substitute for National data.
It may be that the paediatricians involved find the experience of reviewing child deaths rewarding and there will be some learning from detailed review of cases. However, these benefits fall someway short of providing justification of the expense of the process. We urgently need aggregated data to allow comparison of death rates from specific conditions. Only then will we know whether the primary aim of the process can be achieved. Until this data is available the value of the CDOP process cannot be quantified. We live in a time of huge financial constraint in the NHS; it is our duty to extract the maximum benefit from every pound spent in the healthcare economy.
1. Allen L, Lenton S, Fraser J and Sidebotham P. Improving the practice of child death overview panels: a paediatric perspective. Arch Dis Child. 2014;99:193-196
Conflict of Interest:
We have no competing interests
Re: NGS : ethical and social considerations
To the Editor,
We are very pleased to see the comment from Dr Burke regarding the ethical and social considerations of Next Generation Sequencing, in response to our review.
As we noted in our original article, the field is very complex, with a major issue being the interpretation of sequencing data, such that without follow up investigations many variants cannot be confidently assigned as either benign or pathogenic. Given that this is the case, reporting on such variants is premature.
It is also true that further research is urgently needed to determine the potential benefits or harm of wide scale sequencing in children. However, until we have clearer information on what variants can be considered pathogenic, in addition to clear irrefutable evidence that genetic testing in children is beneficial and not harmful, we would continue to recommend that children be entitled to an open future and allowed to choose testing for themselves at the appropriate age.
Conflict of Interest:
Rapid tube weaning - benefits and challenges
Dear Editor-in-chief, in reaction to Charlotte M Wrights editorial "Failure to wean" (2013, 98: 838-840) we would like to add some data on the option of rapid tube weaning to enhance the discussion between rapid versus slow weaning programs and to advocate a flexible and individually tailored approach. As Mrs Wright comments saying that no program suits every child we would like to stress that especially medically fragile patients will need an individually tailored approach. The more rapid the reduction of tube feeds is performed, it is more likely that hunger occurs, whereas the child needs to be evaluated closely during this process.
Our data (1) show that 92% of telemedical vs. 82% onsite treated of 344 children could be weaned completely using a rapid approach ("Graz model of tube weaning") (2,3). Our data support the option of rapid reduction of caloric intake. Currently, we are evaluating our long-term data: relapse rate is <1% (children who had to go back to full tube feeds - TF), <5% partial TF as a result to unforeseeable medical events. As we had 36 patients since 2010 living in the UK, this may show that our online services (www.notube.com) for counselling are seen as helpful. In various conferences and lectures throughout GB we taught our approach. We advocate thorough assessment, team counselling, contact with local centres. Experience and decidedness give hope for parents and children to be able to learn to eat.
Conflict of Interest:
Audit confirming appropriate requesting of CT head scans in children with minor head injury
We read with great interest your work on the cost effectiveness of clinical decision rules for minor head injury. As you point out, increased CT scanning reduces the risk of missing patients that require neurosurgery at the expense of increased radiation risk. This latter point has been recently raised in the literature [1,2] and prompted us to audit our practice of the appropriateness of CT scanning children with minor/borderline head injury.
We collected data spanning a 3 month period (July 1st - Sept 31st 2013). 78 CT head scans were requested from our A&E for paediatric patients. 37 requests were for minor head injury. These were audited against the 2007 NICE guidelines . 4 scan requests were not in accordance with guidelines but 2 of these yielded positive intracranial findings. With 89% of scan requests in accordance with NICE standards, 16% revealed a skull fracture and/or intracranial bleed.
The 2003 NICE head injury guidelines for children were extrapolated from adult data and subsequently revised in 2007 to integrate the CHALICE rule (Children's Head injury Algorithm for the prediction of Important Clinical Event) into a specific paediatric guideline . The CHALICE rule was derived from a large cohort of children and is yet to be validated .
Furthermore, in their 2014 provisional update, NICE specifically identify a need for comparison of clinical decision rules such as CHALICE, CATCH (Canadian Assessment of Tomography for Childhood Head Injury) and PECARN (Paediatric Emergency Care Applied Research Network) with the proposed 2014 NICE guidelines.
In conclusion, our data show appropriately requested paediatric head CT scans as per NICE guidelines. We agree that clinical decision rules once validated and compared with the upcoming guidelines may have a useful role in the reducing the number of children missed who could be considered for neurosurgical intervention.
Dr Ravindran Visagan (FY2 in Paediatrics) Dr Ravi Lehal (Consultant Paediatrician)
REFERENCES 1. Pearce MS, Salotti JA, Little MP, McHugh K, Lee C, Kim KP, Howe NL, Ronckers CM, Rajaraman P, Sir Craft AW, Parker L, Berrington de Gonz?lez A. Radiation exposure from CT scans in childhood and subsequent risk of leukaemia and brain tumours: a retrospective cohort study. Lancet. 2012 Aug 4;380(9840):499-505. doi: 10.1016/S0140-6736(12)60815-0. Epub 2012 Jun 7.
2. Mercuri & Einstein. A small but real risk of cancer in children from undergoing CT. Evid Based Med. 2013 Aug;18(4):158-9. doi: 10.1136/eb-2012-101037.
3. NICE (2007). Head injury: NICE guideline (2007).
4. Harty E, Bellis F. CHALICE head injury rule: an implementation study. Emerg Med J. 2010 Oct;27(10):750-2. doi: 10.1136/emj.2009.077644.
5. NICE (2013). Head injury: NICE guideline DRAFT (August 2013). http://www.nice.org.uk/nicemedia/live/13499/64911/64911.pdf.
Conflict of Interest:
NGS : ethical and social considerations
The new paradigm in which children undergo genetic investigations acknowledges that genetic information belongs to families, as well as individuals. Recent ACMG guidance  requires clinical laboratories in the USA to 'screen' genomes for 56 highly penetrant mutations with 24 disease associations when undertaking next generation sequencing (NGS), regardless of the indication, the age of the patient, and their preferences with regards to receiving the results that are generated. As such, results are less 'incidental' and represent a deliberate, systematic effort to identify genetic changes associated with particular diseases when NGS is undertaken in the clinical setting.
In the paediatric setting, this practice is at odds with well- established norms and professional consensus that testing for highly penetrant, adult-onset diseases should be avoided until adulthood . Incidental findings in children also challenge conventional notions of respect for future autonomy; respecting the rights of children to make decisions about testing at an appropriate age and minimizing the risk of psychological harm when status is prematurely revealed . The enduring relevance of genetic results across the life-course - the results of which may not be welcome to individuals on reaching adulthood - challenge the right of children to an open future . Yet despite fears about the additional risks of genetic testing in minors, there is little evidence to support notions of actual, or potential harm. Potentially, patients may see genetic findings as valuable adjuvant information of potential clinical utility, a welcome addition to modern medical evaluation and personalized medicine in practice.
Clearly the ultimate aim is to maximise the potential benefit of genomic data for children and families. With regards to next-generation sequencing, consensus is urgently needed on which diseases constitute reasonable targets for screening, in addition to timely situated, empirical work on the ethical, social and legal aspects of next-generation sequencing in paediatric practice.
 Green RC et al. American College of Genetics and Genomics recommendations for the reporting of incidental findings in clinical exome and genome sequencing. Genet Med 15(7):565-74
 Clarke A. Genetic testing of Children. Working Party of the Clinical Genetics Society UK. J Med Genet. 1994 31(10): 785-797
 Malpas JP. Predictive genetic testing of children for adult-onset diseases and psychological harm. J Med Ethics 2008; 34: 275- 278
 Feinberg J. The child's right to an open future. In Aiken, W, Lafollette, H, editors. Whose child? Children's rights, parental autonomy, and state power. New Jersey: Littlefield, Adams and Co, pp124-153.
Conflict of Interest:
I am currently a Wellcome Trust Research Fellow looking at the implications of incidental findings and unclassified variants in paediatric genetic medicine.
A patient-centred-care message
I read with great interest the important and elegant article written by Sullivan et al. Dealing with the death of children is always distressing, emotional and complex. It naturally leads to many difficult questions about what and when to say and do. There are no simple answers.
However, one of the few certainties is that whatever decisions are taken, the parents will have to live, and hopefully cope, with what happened to their child for the rest of their lives. Parent empowerment is therefore of central importance.
As wisely emphasised by the authors, this means the doctor's role in informing and supporting the parents continues after an end-of-life decision has been made. This does not change after the child has deceased. I have recently described the experience of being a parent faced with the unforeseen death of a young child 1. My wife and I discovered that keeping the decaying body in our arms for a few hours was an important and helpful part of the mourning process. I strongly encourage doctors in this sad situation to avoid the temptation to be prompt in taking dead children away from their parents with the well-intentioned but misguided aim of reducing relatives' pain.
1. Smeesters PR. Don't steal the body. Lancet 2013;382(9906):1704.
Conflict of Interest:
Incorrectly quoted JCVI Guidance
I read with interest the article by Murray et al on prevention of respiratory syncytial virus disease in infants and children. However, the indications for use of passive immunoprophylaxis with Palivizumab as shown in Box 1 and referenced to in the statement 'Current JCVI guidance states that palivizumab is only cost-effective..... at most risk of severe disease (see box 1)17' are incorrect and represent a mixture of the indications from the Summary of Product Characteristics and a few of the JCVI recommendations for those with SCID and long-term ventilation. The most up to date JCVI guidance for the use of Palivizumab can be found at http://webarchive.nationalarchives.gov.uk/20130107105354/https://www.wp.dh.gov.uk/immunisation/files/2012/07/chap -27a-dh_130131.pdf.
Conflict of Interest:
Do we have the right focuses?
Dr. Bauchner and many other professionals inside and around pediatric emergency medicine are asking: Why doesn?t staff members like parents present in resuscitation?
Let us ask two other questions - one to the man on the street: What would be worst: to meet your child dead after resuscitation or the alternative: to meet your dead child dead AND to experience your dying child under ongoing resuscitation? The other question is directed to the staff: What is more traumatic for you: unsuccessful resuscitation of a child or unsuccessful resuscitation with the parents present?
I am sure we would get a wide spectrum of different opinions. But these answers can give us some valuable viewpoints and two new dimensions in addition to the academic results of traditional research.
Lutz Nietsch, MD, NICU, Aalesund, Norway
Conflict of Interest: