England and Tuthill deserve congratulation for highlighting the need to review the accuracy of drug information on the web. It is encouraging to see an apparent improvement in the quality of online information since we considered this question (Akram et al, 2007) but difficulties in study design would appear to limit the application of these findings. When online information for families is being rated it is important to distinguish between websites geared to the lay reader and those designed for professional reference, which may not be designed specifically to be readable and accessible.
A more ‘lay person’ centred methodology would also suggest that there is more to accuracy of patient information than a ‘correct’ listing of side effects found in a formulary written for prescribers. In line with General Medical Council guidance on consent (GMC, 2020, Para 23), families need information that correctly highlights common side effects and high risk rare events. A website may miss some, less severe, rare side effects and include some side effects that are not recorded in the formulary without necessarily reducing accuracy in a clinically meaningful way.
In this important and topical area for clinical research authors would do well to use established methodologies. For example DISCERN (Charnock et al, 1999) still provides a valuable basis for rating the quality of information.
Akram G, Thomson AH, Boyter A, Morton MJS.
Characterisation and evaluat...
England and Tuthill deserve congratulation for highlighting the need to review the accuracy of drug information on the web. It is encouraging to see an apparent improvement in the quality of online information since we considered this question (Akram et al, 2007) but difficulties in study design would appear to limit the application of these findings. When online information for families is being rated it is important to distinguish between websites geared to the lay reader and those designed for professional reference, which may not be designed specifically to be readable and accessible.
A more ‘lay person’ centred methodology would also suggest that there is more to accuracy of patient information than a ‘correct’ listing of side effects found in a formulary written for prescribers. In line with General Medical Council guidance on consent (GMC, 2020, Para 23), families need information that correctly highlights common side effects and high risk rare events. A website may miss some, less severe, rare side effects and include some side effects that are not recorded in the formulary without necessarily reducing accuracy in a clinically meaningful way.
In this important and topical area for clinical research authors would do well to use established methodologies. For example DISCERN (Charnock et al, 1999) still provides a valuable basis for rating the quality of information.
Akram G, Thomson AH, Boyter A, Morton MJS.
Characterisation and evaluation of UK websites on attention deficit hyperactivity disorder. 2008. Archives of Disease in Childhood 93(8):695-700.
doi:10.1136/adc.2007.130708
Charnock D, Sheppard S, Needham G, et al. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices, 1999. J Epidemiol Community Health 53:105–111
We welcome this article by Heyman et al (2021) in last weeks Archives of Diseases in Childhood in particular the explanation of 'functional tic-like attack disorder'. In our community CAMHS in Bedfordshire, we too have noticed an increase in referrals or enquiries asking about medication and management of tics in young girls. In some cases the tics have started since lockdown in girls who are already being seen by CAMHS for other mental health issues such as anxiety or Autistic Spectrum Disorder. Although most of our patients report an increase in motor tics, we have also been made aware of vocal tics increasing. Normally the tics include noises such as clearing of the thorat or high pitched noises.
In February this year we also cofacilitated a local support group for parents with children with Tourettes Syndrome (Beds, Herts and Bucks Parent Tourette Syndrome Group) with a view to understanding how they were coping in the pandemic. We were surprised to see that so many of the attendess had daughters with Tics and Tourettes and almost all said their daughters struggled with increase in anxiety and worsening of tics. It was interesting to hear that a number of boys with Tourettes coped better as there was lack of pressure from going to school and they were allowed more time with online gaming, although those with associated ADHD understandably struggled being confined to their homes. We would agree that the tics serve some sort of function in that it is an...
We welcome this article by Heyman et al (2021) in last weeks Archives of Diseases in Childhood in particular the explanation of 'functional tic-like attack disorder'. In our community CAMHS in Bedfordshire, we too have noticed an increase in referrals or enquiries asking about medication and management of tics in young girls. In some cases the tics have started since lockdown in girls who are already being seen by CAMHS for other mental health issues such as anxiety or Autistic Spectrum Disorder. Although most of our patients report an increase in motor tics, we have also been made aware of vocal tics increasing. Normally the tics include noises such as clearing of the thorat or high pitched noises.
In February this year we also cofacilitated a local support group for parents with children with Tourettes Syndrome (Beds, Herts and Bucks Parent Tourette Syndrome Group) with a view to understanding how they were coping in the pandemic. We were surprised to see that so many of the attendess had daughters with Tics and Tourettes and almost all said their daughters struggled with increase in anxiety and worsening of tics. It was interesting to hear that a number of boys with Tourettes coped better as there was lack of pressure from going to school and they were allowed more time with online gaming, although those with associated ADHD understandably struggled being confined to their homes. We would agree that the tics serve some sort of function in that it is an expression of anxiety. We would be very cautious about prescribing of medication such as strong antipsychotics in this client group. We have seen that families are grateful for the functional explanation and also encouragemet of the young person to express herself either in therapy or creatively via writing or the arts. We would encourage other services to use functional tic disorder as an explanation and first line psychological management as opposed to rushing in with medication. The hope is that as we get closer to some sort of normality with easing of lockdown, the increase in tics will start to decrease. We also encourage clinicans to signpost affected families to local parent support groups which can be an invaluable source of support.
Thanks fir a simple but powerful effective piece.. It shows the human factors that motivate healthcare workers, cause parents barriers and makes a powerful point:
Children are our patients, not parents .
I submitted this response below and see that it has not been published and have had no response to indicate why this would be so. My email address has changed from jamie.houston@nhs.net .
In discussion with colleagues from across Scotland, no significant increase in numbers of infants of Abusive Head Trauma have been referred to medical child protection services was noted during 2020.
My original eLetter was submitted on 08 Jul 2020:
I share concerns about the impact of Covid, and note that we have seen an increase in NAI referrals over recent months (but not AHT). Given that the number of cases in this institution was so low in previous years, I wonder if there has been a change in referral patterns with GOSH admitting more general PICU cases than usual. Has there been an impact from other PICUs in London that were caring for adults during the peak?
Any new, sudden onset of tics or "tic-like" attacks should prompt consideration of Sydenham's chorea. The typical age range for Sydenham's chorea is 5-15yrs, with females more commonly affected, especially in adolescence, which fits with the group described [https://doi.org/10.1016/j.pediatrneurol.2009.11.015].
Neuropsychiatric signs, such as emotional lability, obsessive-compulsive signs, anxiety, and attention deficit often precede the chorea but may mistakenly lead to a presumption of a functional disorder. It can be difficult for non-specialists to distinguish different kinds of involuntary movements, and this may explain why delayed diagnosis is common in Sydenham's chorea [http://www.dx.doi.org/10.1136/archdischild-2015-308693].
The importance of establishing Sydenham's chorea as a cause is of course so that appropriate treatment can be given, including antibiotics and medication to control the chorea, but also to diagnose and treat co-existing rheumatic heart disease.
Have the authors consider the increased duration and nature of screen time as a trigger for these tic like disorders.
This would have implications for both prevention and treatment.
Is it correct that 'stress' as a trigger is one hypothesis only of functional symptoms that are not medically understood? Was there a comparison made for anxiety and stress is a matched group who did not developed these symptoms?
It is likely that the increase in social media posts and searches for tic disorders and Tourette's reflects their increased incidence rather than is causative. While is possible that the 'validation' does prolong or maintain the episodes it may be preferable to isolation and exclusion.
I read with interest the article ‘Covid-19 related increase in childhood tics and tic-like attacks’ by Heyman et al. It would seem the me that the premise that such a high increase in the prevalence of tics and Tourette’s in adolescent females is related to pandemic related stress is somewhat too simplistic. Their conclusion would seem very plausible in those with a predisposition or vulnerability to motor and phonic tics but including all these new cases under the umbrella of just ‘anxiety’ appears dismissive of other potential aetiological factors. The temporal relation to the Covid pandemic cannot simply be attributed to the psychological effects of pandemic related stress. Have any of these kids been tested for Covid antibodies to confirm or exclude that they have not been infected, possibly asymptomatically. Perhaps even more importantly have they been investigated for the presence of anti- neuronal antibodies which would be indicative of a possible autoimmune link that might explain this sudden surge in tics/Tourette’s. This PANS type possibility needs to be fully evaluated before attributing this increase in new onset of severe tics and tic-like attacks as a functional manifestation of the Covid-19 pandemic.
Many thanks for this analysis of a prospectively collected multi-centre data set, and for highlighting the unmet need for the development of a structured neurodevelopmental follow up pathway for children with heart disease.
In the sub category 'Neurodevelopmental outcome' under 'Methods' (page 264), the gross motor scores for children < 33 months mentions a scale of <39 as low. Should this not be <30 (instead of <39), given that 'low' is classified as less than 2 SD from 50 (and borderline is between 30 and 39)?
Thank you for sharing your experience. It echoes our current internal debate about parental participation. It would be so useful if you can share you one-page orientation leaflet about CEC, its purpose, composition and limitations as a supplementary attachment to this valuable letter.
Dear Editor,
We read with interest the report by Worth and colleagues on thyroid scintigraphy in infants with congenital hypothyroidism (CH). While their study is valuable in confirming the role of scintigraphy in locating the gland, we are concerned at the assertion that a gland in situ (GIS) constitutes a “subtype” of CH, and their placing it alongside defined entities of permanent CH such as athyreosis and ectopia. GIS is a purely descriptive term, encompassing both permanent and transient CH and comprising hypoplasia (eg TSH-receptor and PAX8 gene mutations), thyroid enlargement (classical dyshormonogenesis, iodine insufficiency) and normal-sized thyroid (multiple aetiologies). Infants with GIS include preterm and sick babies who are likely to have transient CH. It is not clear how many of the 20/37 GIS infants with transient CH in Worth's study were preterm/sick or had Down syndrome, and their prevalence figures of 28% for ectopia and 26% for “dysplasia” would be higher if expressed in the context of permanent rather than transient CH.
Worth et al have used scintigraphy to define GIS as small, normal and enlarged but do not state the criteria or detail their methodology. While scintigraphy reliably identifies thyroid ectopia, demonstrates intensity of isotope uptake and conveys an impression of gland size, ultrasound is superior in evaluation of size, vascularity (using colour Doppler) and detailed morphology2. Yet this modality is not discussed despi...
Dear Editor,
We read with interest the report by Worth and colleagues on thyroid scintigraphy in infants with congenital hypothyroidism (CH). While their study is valuable in confirming the role of scintigraphy in locating the gland, we are concerned at the assertion that a gland in situ (GIS) constitutes a “subtype” of CH, and their placing it alongside defined entities of permanent CH such as athyreosis and ectopia. GIS is a purely descriptive term, encompassing both permanent and transient CH and comprising hypoplasia (eg TSH-receptor and PAX8 gene mutations), thyroid enlargement (classical dyshormonogenesis, iodine insufficiency) and normal-sized thyroid (multiple aetiologies). Infants with GIS include preterm and sick babies who are likely to have transient CH. It is not clear how many of the 20/37 GIS infants with transient CH in Worth's study were preterm/sick or had Down syndrome, and their prevalence figures of 28% for ectopia and 26% for “dysplasia” would be higher if expressed in the context of permanent rather than transient CH.
Worth et al have used scintigraphy to define GIS as small, normal and enlarged but do not state the criteria or detail their methodology. While scintigraphy reliably identifies thyroid ectopia, demonstrates intensity of isotope uptake and conveys an impression of gland size, ultrasound is superior in evaluation of size, vascularity (using colour Doppler) and detailed morphology2. Yet this modality is not discussed despite the published evidence that combining ultrasound and scintigraphy enhances diagnostic accuracy.3,4
Finally, authors state that their study was not designed to investigate genetic aetiology. We believe that infants with suspected CH are entitled to a comprehensive and integrated assessment including venous thyroid function tests, serum thyroglobulin, scintigraphy to locate the thyroid, ultrasound imaging to determine morphology and estimate gland size, and molecular genetic analysis in selected cases. Most importantly, infants identified with GIS require critical follow up to determine whether their CH is permanent or transient 5, a management strategy which depends on thyroid imaging being performed in suspected CH. (327 words)
References
1. Worth C, Hird B, Tetlow L, Wright N, Patel L, Banerjee I. Arch Dis Child 2021;106:77–79.
2. Mansour C, Ouarezki Y, Jones JH, Green M, Stenhouse EJ, Irwin G, Hermanns P, Pohlenz J, Donaldson MDC. Determination of thyroid volume in infants with suspected congenital hypothyroidism—the limitations of both subjective and objective evaluation. BJR Open 2020; 2: 20200001. doi. org/ 10. 1259/ bjro. 20200001
3. Perry RJ, Maroo S, Maclellan AC, Jones JH, Donaldson MDC. Combined ultrasound and isotope scanning is more informative in the diagnosis of congenital hypothyroidism than single scanning. Arch Dis Child 2006; 91: 972-976 doi.org/10.1136/adc.2006.096776
4. A. Lucas-Herald, J. Jones, M. Attaie, S. Maroo, D. Neumann, T. Bradley, J. Pohlenz, M. Donaldson. Predictive value of ultrasound and isotope thyroid scanning, alone and in combination, in the diagnosis of infants referred with TSH elevation on newborn screening. J Pediatr 2014;99:363-384. https://doi.org/10.1016/j.jpeds.2013.11.057
5. Léger J, Olivieri A, Donaldson M, Torresani T, Krude H, van Vliet G, et al. European Society for paediatric endocrinology consensus guidelines on screening, diagnosis, and management of congenital hypothyroidism. J Clin Endocrinol Metab 2014; 99: 363–84. doi: https://doi.org/10. 1210/jc.2013-1891
England and Tuthill deserve congratulation for highlighting the need to review the accuracy of drug information on the web. It is encouraging to see an apparent improvement in the quality of online information since we considered this question (Akram et al, 2007) but difficulties in study design would appear to limit the application of these findings. When online information for families is being rated it is important to distinguish between websites geared to the lay reader and those designed for professional reference, which may not be designed specifically to be readable and accessible.
A more ‘lay person’ centred methodology would also suggest that there is more to accuracy of patient information than a ‘correct’ listing of side effects found in a formulary written for prescribers. In line with General Medical Council guidance on consent (GMC, 2020, Para 23), families need information that correctly highlights common side effects and high risk rare events. A website may miss some, less severe, rare side effects and include some side effects that are not recorded in the formulary without necessarily reducing accuracy in a clinically meaningful way.
In this important and topical area for clinical research authors would do well to use established methodologies. For example DISCERN (Charnock et al, 1999) still provides a valuable basis for rating the quality of information.
Akram G, Thomson AH, Boyter A, Morton MJS.
Show MoreCharacterisation and evaluat...
We welcome this article by Heyman et al (2021) in last weeks Archives of Diseases in Childhood in particular the explanation of 'functional tic-like attack disorder'. In our community CAMHS in Bedfordshire, we too have noticed an increase in referrals or enquiries asking about medication and management of tics in young girls. In some cases the tics have started since lockdown in girls who are already being seen by CAMHS for other mental health issues such as anxiety or Autistic Spectrum Disorder. Although most of our patients report an increase in motor tics, we have also been made aware of vocal tics increasing. Normally the tics include noises such as clearing of the thorat or high pitched noises.
Show MoreIn February this year we also cofacilitated a local support group for parents with children with Tourettes Syndrome (Beds, Herts and Bucks Parent Tourette Syndrome Group) with a view to understanding how they were coping in the pandemic. We were surprised to see that so many of the attendess had daughters with Tics and Tourettes and almost all said their daughters struggled with increase in anxiety and worsening of tics. It was interesting to hear that a number of boys with Tourettes coped better as there was lack of pressure from going to school and they were allowed more time with online gaming, although those with associated ADHD understandably struggled being confined to their homes. We would agree that the tics serve some sort of function in that it is an...
Dear Anon
Thanks fir a simple but powerful effective piece.. It shows the human factors that motivate healthcare workers, cause parents barriers and makes a powerful point:
Children are our patients, not parents .
I submitted this response below and see that it has not been published and have had no response to indicate why this would be so. My email address has changed from jamie.houston@nhs.net .
In discussion with colleagues from across Scotland, no significant increase in numbers of infants of Abusive Head Trauma have been referred to medical child protection services was noted during 2020.
My original eLetter was submitted on 08 Jul 2020:
I share concerns about the impact of Covid, and note that we have seen an increase in NAI referrals over recent months (but not AHT). Given that the number of cases in this institution was so low in previous years, I wonder if there has been a change in referral patterns with GOSH admitting more general PICU cases than usual. Has there been an impact from other PICUs in London that were caring for adults during the peak?
Any new, sudden onset of tics or "tic-like" attacks should prompt consideration of Sydenham's chorea. The typical age range for Sydenham's chorea is 5-15yrs, with females more commonly affected, especially in adolescence, which fits with the group described [https://doi.org/10.1016/j.pediatrneurol.2009.11.015].
Neuropsychiatric signs, such as emotional lability, obsessive-compulsive signs, anxiety, and attention deficit often precede the chorea but may mistakenly lead to a presumption of a functional disorder. It can be difficult for non-specialists to distinguish different kinds of involuntary movements, and this may explain why delayed diagnosis is common in Sydenham's chorea [http://www.dx.doi.org/10.1136/archdischild-2015-308693].
The importance of establishing Sydenham's chorea as a cause is of course so that appropriate treatment can be given, including antibiotics and medication to control the chorea, but also to diagnose and treat co-existing rheumatic heart disease.
Have the authors consider the increased duration and nature of screen time as a trigger for these tic like disorders.
This would have implications for both prevention and treatment.
Is it correct that 'stress' as a trigger is one hypothesis only of functional symptoms that are not medically understood? Was there a comparison made for anxiety and stress is a matched group who did not developed these symptoms?
It is likely that the increase in social media posts and searches for tic disorders and Tourette's reflects their increased incidence rather than is causative. While is possible that the 'validation' does prolong or maintain the episodes it may be preferable to isolation and exclusion.
I read with interest the article ‘Covid-19 related increase in childhood tics and tic-like attacks’ by Heyman et al. It would seem the me that the premise that such a high increase in the prevalence of tics and Tourette’s in adolescent females is related to pandemic related stress is somewhat too simplistic. Their conclusion would seem very plausible in those with a predisposition or vulnerability to motor and phonic tics but including all these new cases under the umbrella of just ‘anxiety’ appears dismissive of other potential aetiological factors. The temporal relation to the Covid pandemic cannot simply be attributed to the psychological effects of pandemic related stress. Have any of these kids been tested for Covid antibodies to confirm or exclude that they have not been infected, possibly asymptomatically. Perhaps even more importantly have they been investigated for the presence of anti- neuronal antibodies which would be indicative of a possible autoimmune link that might explain this sudden surge in tics/Tourette’s. This PANS type possibility needs to be fully evaluated before attributing this increase in new onset of severe tics and tic-like attacks as a functional manifestation of the Covid-19 pandemic.
Dear Authors
Many thanks for this analysis of a prospectively collected multi-centre data set, and for highlighting the unmet need for the development of a structured neurodevelopmental follow up pathway for children with heart disease.
In the sub category 'Neurodevelopmental outcome' under 'Methods' (page 264), the gross motor scores for children < 33 months mentions a scale of <39 as low. Should this not be <30 (instead of <39), given that 'low' is classified as less than 2 SD from 50 (and borderline is between 30 and 39)?
Many thanks for clarifying.
Kind regards.
Thank you for sharing your experience. It echoes our current internal debate about parental participation. It would be so useful if you can share you one-page orientation leaflet about CEC, its purpose, composition and limitations as a supplementary attachment to this valuable letter.
Dear Editor,
Show MoreWe read with interest the report by Worth and colleagues on thyroid scintigraphy in infants with congenital hypothyroidism (CH). While their study is valuable in confirming the role of scintigraphy in locating the gland, we are concerned at the assertion that a gland in situ (GIS) constitutes a “subtype” of CH, and their placing it alongside defined entities of permanent CH such as athyreosis and ectopia. GIS is a purely descriptive term, encompassing both permanent and transient CH and comprising hypoplasia (eg TSH-receptor and PAX8 gene mutations), thyroid enlargement (classical dyshormonogenesis, iodine insufficiency) and normal-sized thyroid (multiple aetiologies). Infants with GIS include preterm and sick babies who are likely to have transient CH. It is not clear how many of the 20/37 GIS infants with transient CH in Worth's study were preterm/sick or had Down syndrome, and their prevalence figures of 28% for ectopia and 26% for “dysplasia” would be higher if expressed in the context of permanent rather than transient CH.
Worth et al have used scintigraphy to define GIS as small, normal and enlarged but do not state the criteria or detail their methodology. While scintigraphy reliably identifies thyroid ectopia, demonstrates intensity of isotope uptake and conveys an impression of gland size, ultrasound is superior in evaluation of size, vascularity (using colour Doppler) and detailed morphology2. Yet this modality is not discussed despi...
Pages