eLetters

1479 e-Letters

  • Identification and prevention of respiratory problems linked to eating and drinking difficulties for children and young people with cerebral palsy.

    I welcome Himmelmann’s editorial concerning the prevention of respiratory problems for individuals with cerebral palsy1. As a speech and language therapist working within a multi-disciplinary nutrition team, I recognise the need to increase our understanding of the complex interactions between risk factors through collaboration across stakeholders. It is of particular concern that solids or liquids in the lungs or windpipe have been identified as the cause of death for almost a quarter of people with cerebral palsy2.

    With this in mind, we developed the Eating and Drinking Ability Classification System (EDACS) for people with cerebral palsy from age 3 years. EDACS classifies limitations to eating and drinking ability in 1 of 5 levels, replacing frequently used terms “mild”, “moderate” and “severe” which lack shared definition. Key features of “safety” and “efficiency” are used to determine 5 distinct levels of ability: from Level I Eats and drinks safely and efficiently through to Level V Unable to eat or drink safely – tube feeding may be considered to provide nutrition. EDACS demonstrated strong content validity and excellent inter-observer reliability when used by speech and language therapists3. EDACS is free to download from www.edacs.org along with sixteen completed translations. Ten other language translations are currently in process.

    Himmelmann1 points out associations between limitations to gross motor function and...

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  • Response to e-letter entitled: Importance of dermatology in paediatric vulval disease

     

    Thank you for the opportunity to reply, here is our response.

    We would like to thank the authors for their valuable comments, we believe that these comments add to and complement our article. Our article aimed to cover a wide breadth of common gynaecological conditions that can affect children and unfortunately we were therefore not able to go in to great detail for each condition covered. We would certainly agree on the importance of an early diagnosis for lichen sclerosus and collaboration with a dermatologist for treatment if available. The British Association of Dermatologists guidelines for the management of lichen sclerosus was not published when we wrote our article, we can see that this is a very valuable resource.

    Kind Regards

    Jo Ritchie

  • Importance of dermatology in paediatric vulval disease

    Dear Sir,

    We read with interest the review on ‘The paediatrician and the management of common gynaecological conditions’ (1). This is an important topic but we have concerns about incorrect information in this paper with respect to vulval disorders. Most vulval conditions are dermatological rather than gynaecological and the involvement of a dermatologist in the management of these children is vital. The breadth of paediatric vulval disease is not reflected in this paper including the concept of vulval presentation of various skin conditions (eg. psoriasis, chronic bullous dermatosis of childhood, erythema multiforme) and the need to examine the rest of the skin including the hair, nails and mucosa.

    There appears to be some confusion within the article, for example, a vaginal discharge is not a vulval disorder. While a discharge can lead to a vulvitis, the two problems of vaginitis and vulvitis should be distinguished as the investigation and management of each is very different.

    The commonest condition seen in children presenting with vulval symptoms is an irritant dermatitis which is not specifically mentioned in the section on vulval irritation. This is often seen in those with a background of atopy and requires emollients and a mild topical steroid application intermittently with good hygiene measures. Other important disorders such as Lipschutz ulcers and genital warts have been omitted.

    However, our major concerns relate to the section o...

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  • Editor's note

    This study was published online in Archives of Disease in Childhood after peer review in September 2017. The trial tested the effectiveness of a neurolinguistic programming intervention (used widely but never formally tested) in children and young people with chronic fatigue recruited between 2010 and 2013. Though the number of participants was small, analysis suggested a benefit in terms of physical function (measured by the standard SF 36 scale) at both 6 and 12 months after intervention.

    Since publication, the study has been criticised for failing to meet ICMJE and BMJ policy on trial registration and for not fully adhering to CONSORT guidance on trial reporting. The journal has been criticised for not detecting these issues during editorial and peer review. We have acknowledged these comments and reviewed our processes in relation to this paper and relating to EQUATOR guidance in general. In addition, we have received clarifications from the authors which are under editorial consideration.

  • Prevention of conflict is better when there is no cure

    I was interested to read the articles in this month’s journal exploring the difficulties of end of life decisions when parents and their doctors cannot agree.(1–3) These articles reflect the global media attention focused upon several recent tragic cases in the UK, where differences in view between parents and the clinical team led to confrontation and an unfolding tragedy in the public arena. Whilst all these articles describe the complexity they offer little in terms of solutions. Is it possible to prevent future cases from degenerating into public dispute, or is it an inevitable consequence of modern medicine? Have we advanced to a point where children that would have succumbed now live, and so the focus of care has shifted towards how they live rather than if they live or die?

    At least part of the solution should be a shift in focus shift toward prevention of conflict in these high stakes clinical areas rather than finding a remedy once conflict has occurred. This is not just about being better at communicating with families. Conflict prevention will require cultural change, the identification of early warning signs and the use of mediation to facilitate communication between parents and doctors at an early stage.

    Communication is not just about what we say, but about how we act and the social networks that we live and work in. It was interesting that there was also an article on Family Integrated Care in the same issue of the journal (4). Patel and colle...

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  • Charlie Gard and the dictates of the heart

    The story of Charlie, like that of the little Alfie, are events on which everything has been said, but without an adequate reflection on some basic principles that concern precisely the respect for life and the quality of care that daily thousands of health workers try to provide terminal patients. We can discuss for a long time what is best for the interest of the individual patient and family, but the value of the scientific method that constitutes the cornerstone of the medical profession can not be ignored.
    Likewise it is the duty of the community to uphold the moral integrity of clinical practice by refusing to provide treatments that do not meet a reasonable scientific justification based on evidence of efficacy. Not thinking according to these principles are also betraying the dictates of the heart and not only those of a reasonable science, which should always be at the service of the patient's good, even in the face of death, in a society that should be defined as "civil".
    If it is true that the heart has its reasons that reason does not know, it is the heart that, in the case of terminal children, makes the best choices.
    He wrote anonymously one of the two hundred health care workers who followed Charlie: "We did not want to lose Charlie, but it was our legal and moral obligation, our job, to become his spokesman when it was time to say enough".

  • Calcineurin inhibitors tacrolimus and Cyclosporine A in the treatment of Henoch- Schönlein Purpura in children

    I read with great interest the article titled “Off-label use of tacrolimus in children with Henoch-Schönlein purpura nephritis: a pilot study” by Zhang et al.(1). To my great astonishment the authors did not discuss any of the studies published on the use of another calcineurin inhibitor Cyclosporine A (CyA)  in the treatment of Henoch Schönlein purpura in children.

    In the first chapter of the discussion section they refer to our report where we compared methylprednisolone pulse treatment (MP) and CyA in a randomized trial (2) stating that “Remission was achieved slowly and only in 53% of patients with methylprednisolone” (1).

    I would like to draw the readers´s attention to the fact that in the same paper we showed that another calcineurin inhibitor i.e. CyA was by no means inferior to MP for the treatment of severe HSN (2). Indeed, CyA was even more efficacious than MP, since remission was achieved within 3 months in all CyA-treated patients (N=11) compared to 54% (7/13) in MP group (p=0.016). All the CyA treated patients responded to the treatment with no need for additional immunosuppressive therapy. In contrast, in MP group 6/13 (46%) needed additional immunosuppressive treatment. The remission rates in the MP treated patients were 85% (11/13) and 77% (10/13) after 1 and 2 years, respectively in contrast to 100 % in CyA-treated patients. The renal survival rate in the CyA group was 100%, as against 85% in the...

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  • The use of nasal mask continuous positive airway pressure in preterm infants.

    The evidence that nasal mask continuous positive airway pressure (CPAP) is better than bilateral, short nasal prong CPAP is convincing.1 However the evidence of benefit is only for short-term outcomes. I have significant concerns about using nasal mask CPAP continuously over many days in extremely preterm or extremely low birth weight infants. These babies have soft malleable skulls. We saw that this was a problem decades ago when small babies were primarily nursed with their head on the side; and subsequent dolichocephaly was very common as a result.2 The hat and straps needed to keep a mask in place put pressure on a baby's soft, malleable skull in a different way to the hat used during nasal prong CPAP. The long term effects of this pressure on boney development, particularly of the midface, are unknown, but they could be considerable. Because of these concerns I do not use nasal mask CPAP continuously. I alternate the use of masks with nasal prongs.

    1. Kieran EA, Twomey AR, Molloy EJ, et al. Randomized trial of prongs or mask for nasal continuous positive airway pressure in preterm infants. Pediatrics 2012;130:e1170–6.doi:10.1542/peds.2011-3548.

    2. Ifflaender S, Rüdiger M, Konstantelos D, Wahls K, Burkhardt W. Prevalence of head deformities in preterm infants at term equivalent age. Early Human Development 2013;89(12):1041-1047.

  • Authors' reply:

    I would like to thank Professor Mitch Blair for his valuable input and bringing up the issue of considering symptoms onset when interpreting point-of-care test results in acute care settings. Recognizing serious infection in children can be challenging, especially at disease onset when the severity of the infection is unclear. Although the choice of biomarker is pivotal in the risk assessment of acutely ill children guided by the point-of-care test result, we had very good rationale to choose C-reactive protein (CRP) as our preferred test.

    Previous research:
    CRP and procalcitonin were identified as the best inflammatory markers for serious infections in children to date in a systematic review, which only identified studies from hospital settings.[1] A CRP <20mg/L and procalcitonin <0.5ng/mL significantly reduce the risk of missing a serious infection in children. Our recent study on point-of-care (POC) CRP in primary care found an even lower threshold of 5mg/L to rule out serious infection in those children, probably due to the early presentation in primary care, when the inflammatory response is still developing, which indeed confirms the importance of setting.[2]
    However, as shown in Figure 6 of the paper by Van den Bruel et al., C-reactive protein and procalcitonin had comparable diagnostic accuracy in the systematic review, as the shape of the curves was roughly similar and the confidence intervals were largely overlapping.[1]

    Practical...

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  • CRP first? : Less is better for education

    With great interest, I read a recent study by Verakel et al (1). illustrating the utility of a newly developed algorithm for excluding serious infections (SI) in acutely ill children. Their algorithm stratifies patients into three risk groups based on the values of point-of-care C reactive protein (POC CRP) and is meant to assist the decision making of physicians, especially trainees. This method demonstrated excellent diagnostic performance and enabled physicians to rule out 36% of SI in children visiting outpatient clinics and emergency departments. However, their proposed method does raise some concerns about potential negative consequences in the educational context.
    The algorithm requires physicians to perform the POC CRP test for all patients regardless of their pre-test probability of SIs. In addition, their model may lead young physicians to draw conclusions about the patients’ clinical features only after estimating the risk of SI based on the POC CRP value and may cause them to neglect the importance of history taking and physical examinations.
    As the authors state, the POC CRP is an innovative tool in pediatric acute care; a POC sample can be obtained by a simple finger prick and the test results can be obtained within several minutes. Nevertheless, in pediatric practice sometimes “doing nothing” is better than “doing something”. This may well be one of the most important principles in pediatrics (2-4). Our role as senior physicians is to show traine...

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