Study collecting the views of young people, parents of children with long COVID, and doctors, finds that long COVID in children is poorly understood by doctors

Dr Katharine Looker

‘Enhancing the utilization of COVID-19 testing in schools’, is a study which will look at the characteristics of long COVID and COVID-19 infection in children. ‘Long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. The study is being funded as a result of a rapid funding call by Health Data Research UK (HDR UK), the Office for National Statistics (ONS) and UK Research and Innovation (UKRI). The study forms part of the larger Data and Connectivity National Core Study, which is led by HDR UK in partnership with ONS.

The COVID-19 testing in schools study is related to the CoMMinS (COVID-19 Mapping and Mitigation in Schools) study being undertaken by the University of Bristol in partnership with Bristol City Council, Public Health England [PHE] and Bristol schools. CoMMinS aims to give us an understanding of COVID-19 infection dynamics centred around school pupils and staff and onward transmission to family contacts, using regular testing. Our study will jointly analyse data from CoMMinS, along with information from Electronic Patient Records, and data from the COVID-19 Schools Infection Survey (SIS; jointly led by the London School of Hygiene & Tropical Medicine [LSHTM], PHE, and ONS). The SIS is a study similar to CoMMinS but carried out nationally.

To help inform research questions and methods for the study, members from the University of Bristol study team gathered views about long COVID in children between 9 March and 30 April 2021 from:

  • seven young people from the NIHR Bristol Biomedical Research Centre Young People’s Advisory Group (YPAG)
  • five families whose children have long COVID or suspected long COVID, recruited through two online UK campaign groups for long COVID, and
  • a survey completed by four GPs and one paediatrician, and an online meeting with two paediatricians.

It is important to note that the opinions gathered were based on small samples which may not be representative.

Through the meeting and survey with the doctors, the study team found that clinical understanding of long COVID in children is currently very limited.

The doctors said that it may be hard to distinguish between long COVID and other conditions with similar symptoms. Many of the symptoms of long COVID, like fatigue and feeling sick, aren’t very specific, and are common to many different conditions. Long COVID in children currently lacks a clinical definition, making diagnosis difficult. It isn’t yet properly understood whether long COVID is a new condition in itself, or a group of conditions like post viral fatigue, which is already recognised.

Young people, and families of children with long COVID or suspected long COVID, who were also asked for their opinion, said that feeling sick or stomach pain, extreme tiredness, and headaches were the symptoms they would rank as most ‘harmful’. For young people, this was based on them imagining having the symptoms. For the families, this was based on their first-hand experience.

The families also said that the symptoms their children were experiencing were numerous, often very severe, and more wide-ranging than those currently listed on the NHS website for long COVID. It is not yet clear what is causing the unusual symptoms.

The families said that they had struggled to get a diagnosis and treatment for their children. They also said that long COVID symptoms were having a significant impact on their children’s day-to-day lives both physically and psychologically, and that some of the children had missed school because of the symptoms. Some of the families also found fevers difficult to manage because their children had to miss school to self-isolate every time they had a fever. They wanted to know why the set of symptoms were being experienced, and why their children in particular had developed them.

It is not known how many children have or will develop long COVID. So far, studies which have tried to measure the rate of long COVID in children suggest it is rare. However, quantifying the number of cases is made difficult by a lack of clinical understanding of long COVID including the lack of an agreed clinical definition. The opinions collected suggest that relying on clinical diagnoses alone will under-estimate cases. On the other hand, there needs to be a cautious approach to estimating the number of cases based on non-specific symptoms, as other conditions which cause similar symptoms may be counted as well.

Caroline Relton, Professor of Epigenetic Epidemiology and Director of the Bristol Population Health Science Institute at the University of Bristol, joint lead for CoMMinS and one of the lead authors of the report, said: “The opinions we gathered further highlight that it is difficult to count the number of children with long COVID on the basis of diagnoses alone while long COVID in children remains poorly defined.

“There are added complications of studying long COVID in children, when it is sometimes difficult to disentangle what might be the result of experiencing infection from what might result from the wider impact of experiencing the pandemic. Isolation, school closures, disrupted education and other influences on family life could all have health consequences. Defining the extent of the problem in children and the root causes will be essential to helping provide the right treatment and to aid the recovery of young people who are suffering.”

The findings highlight that examining GP and hospital visits, and school attendance, might currently be a more useful and feasible way of assessing how COVID-19 has affected children, rather than relying only on diagnoses of long COVID. However, the study researchers also need to be aware how often healthcare is accessed according to need, and absence from school due to self-isolation, which will affect what is being measured.

Feeling sick or stomach pain, extreme tiredness, and headaches will be important symptoms to consider in the study.

Read the full report

Find the full report on the CoMMinS study news page.

 

Breastfeeding research improves lives and advances health, but faces conflicts


Research shows the breast milk of women who have recovered from COVID-19 offers a source of COVID-19 antibodies.
(Shutterstock)

Meghan Azad, University of Manitoba; Katie Hinde, Arizona State University; Lars Bode, University of California San Diego; Luisa Zuccolo, University of Bristol; Merilee Brockway, University of Manitoba; Nathan C. Nickel, University of Manitoba, and Rafael Perez-Escamilla, Yale University

Breastfeeding and breast milk provide big opportunities to support maternal, infant and population health. This is especially true during the current pandemic because breastfeeding can help alleviate food insecurity, and research shows the breast milk of women who have recovered from COVID-19 offers a source of COVID-19 antibodies.

Breastfeeding saves lives and prevents illness. It is environmentally friendly and profoundly important to children’s long-term development. After all, breast milk is the only food that has evolved specifically to feed humans.

Breastfeeding matters

Beyond supplying nutrition, breast milk provides personalized immune protection and shapes the developing microbiome. Scientists have discovered enzymes, hormones, antibodies and live cells in breast milk, and these bioactive components could hold the key to developing new therapies — not only for COVID-19, but also autoimmune diseases, diabetes and cancer.

Yet, remarkably, we still don’t fully understand the composition of breast milk, or the biological basis for its many health effects. In fact, more scientific papers have been published on headaches than breastfeeding, and more federal research dollars from Canadian Institutes of Health Research and the Natural Sciences and Engineering Research Council of Canada have been invested to study corn than breast milk.

The act of breastfeeding also supports mother-infant bonding and helps to prevent breast and ovarian cancer in mothers. Unfortunately, most mothers do not even meet their own breastfeeding goals, let alone achieve recommendations of exclusive breastfeeding for six months, followed by 18 months of breastfeeding along with other foods.

This is particularly concerning during this pandemic, when mothers infected with COVID-19 may be separated from their newborns (despite World Health Organization guidance to the contrary) and breastfeeding support is often unavailable because public health visits are being cancelled and lactation services have been suspended in many places.

Tensions abound

Every parent knows that infant feeding is a complex issue, often evoking strong emotions based on personal experience. Difficult or negative breastfeeding experiences can fuel a defensive “breastfeeding denialism” attitude.

A woman with tattoos breastfeeding her infant
Breastfeeding support such as public health visits may not be available during the pandemic.
(Pexels/Anna Shvets)

Conversely, some breastfeeding advocates refuse to acknowledge that for some families, formula is necessary for medical, personal, societal or socioeconomic reasons. These extreme attitudes cause a tense and unproductive environment for researchers working to generate inclusive evidence-based guidance for infant feeding.

Industry partnerships also cause tension in this field because the infant feeding industry frequently violates the World Health Organization code for marketing of breastmilk substitutes, and transgressions have worsened during the pandemic. However, due to lack of funding for breastfeeding research, scientists are often faced with choosing between industry funding or no funding at all.

Unfortunately, these tensions often detract from the energy and resources that breastfeeding advocates, researchers, health professionals and policy-makers could be using to advance their shared goal of supporting maternal and child health.

What can be done

Of course, members of the diverse breastfeeding advocacy and research communities will not always agree — but we should aim to find common ground and work together. There are many stakeholders involved, each with a role to play:

Governments and non-profit funding organizations should acknowledge the importance of breastfeeding and breast milk and invest more resources into this field.

Researchers should build interdisciplinary teams to study breast milk as a biological system and think broadly about “breastfeeding challenges” in the context of complex social systems – including social inequities, parental leave policies, lactation difficulties and donor breast milk.

Companies, researchers and advocacy groups should co-develop a conflict of interest framework for research on breastfeeding and breast milk and reporting of results.

Messaging is key to achieving these goals. All groups need to communicate effectively with each other, and with the health-care, research and public sectors. This means providing or sharing clear resources to convey scientific evidence free of conflict of interest, targeted to each audience, such as fact sheets for policy-makers, engaging videos for the public and infographics for health-care providers.

Stakeholders also need to actively discredit unfounded claims and misinformation, such as unsubstantiated health claims made by infant nutrition companies, or rumours about the transmission of COVID-19 via breastfeeding, when there is no evidence of this occurring.

Looking forward

A woman breastfeeding a baby
COVID-19 has highlighted both the importance and fragility of breastfeeding support systems.
(Shutterstock)

Progress in breastfeeding, breast milk and lactation research is being hampered by tensions among researchers, advocates and industry.

As breast milk scientists, breastfeeding researchers and lactation specialists, we are concerned about these tensions and their potential to impede or delay discoveries in our field. Last year, we held a workshop to discuss these concerns and develop solutions.

Our workshop paper was written before the pandemic, but its recent publication is timely. The pandemic has brought researchers together in ways that seemed impossible before.

Breast milk research that would normally take years has been completed in months with unprecedented efficiency. A global network of human milk banks was established in a matter of days to share information about safe operations during the pandemic. Milk scientists and breastfeeding researchers are meeting monthly with the WHO to speed up the transition from discovery to policy.

We hope these trends will continue beyond the pandemic and become the new standard for doing and sharing research.

COVID-19 has also emphasized both the importance and fragility of breastfeeding support systems, which have suffered considerably due to current restrictions. The pandemic has also highlighted the potential of breast milk to inform new avenues of biomedical research, such as milk antibodies as potential therapeutics.

We hope this added urgency will encourage researchers, advocates, funders and policy-makers to work together to accelerate progress in supporting breastfeeding and breast milk research.The Conversation

Meghan Azad, Associate Professor of Pediatrics and Child Health; Canada Research Chair in the Developmental Origins of Chronic Disease, University of Manitoba; Katie Hinde, Associate Professor, School of Human Evolution and Social Change, Arizona State University; Lars Bode, Professor of Pediatrics and Director of Mother-Milk-Infant Center of Research Excellence, University of California San Diego; Luisa Zuccolo, Senior Research Fellow, Health Sciences, University of Bristol; Merilee Brockway, Post-doctoral Fellow, Department of Pediatrics and Child Health, University of Manitoba; Nathan C. Nickel, Associate Professor of Community Health Sciences; Co-Director MILC; Associate Director, Manitoba Centre for Health Policy, University of Manitoba, and Rafael Perez-Escamilla, Professor of Public Health, Yale University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Using genetics to understand the relationship between young people’s health and educational outcomes

Amanda Hughes, Kaitlin H. Wade, Matt Dickson, Frances Rice, Alisha Davies, Neil M. Davies & Laura D. Howe

Follow Amanda, Kaitlin, Matt, Alisha, Neil and Laura on twitter

Young people with health problems tend to do less well in school than other students, but it has never been clear why. One explanation is that health problems directly damage educational outcomes. In that case, policymakers aiming to raise educational standards might want to focus first on health as a means of improving attainment.

But are there other explanations? What if falling behind in school can affect health, for instance causing depression? Also, many health problems are more common among children from less advantaged backgrounds – for example, from families with fewer financial resources, or whose parents are themselves unwell. These children also tend to do less well in school, for reasons that may have nothing to do with their own health. How do we know if their health, or their circumstances, are affecting attainment?

It is also unclear if health matters equally for education at all points in development, or particularly in certain school years. Establishing how much health does impact learning, when, and through which mechanisms, would better equip policymakers to improve educational outcomes.

Photo by Edvin Johansson on Unsplash

Using genetic data helps us understand causality

Genetic data can help us answer these questions. Crucially, experiences like family financial difficulties, which might influence both a young person’s health and their learning, cannot change their genes. So, if young people genetically inclined to have asthma are more absent from school, or do less well in their GCSEs, that would strongly suggest an impact of asthma itself. Similarly, while falling behind in school might well trigger depression, it cannot change a person’s genetic propensity for depression. So, a connection between genetic propensity for depression and worse educational outcomes supports an impact of depression itself. This approach, of harnessing genetic information to better understand causal processes, is known as Mendelian randomization.

To find out more, we investigated links between

  • health conditions in childhood and adolescence
  • school absence in years 10 & 11
  • and GCSE results.

We used data from 6113 children born in the Bristol area in 1991-1992. All were participants of the Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s. We focused on six different aspects of health: asthma, migraines, body mass index (BMI), and symptoms of depression, of attention-deficit hyperactivity disorder (ADHD), and of autism spectrum disorder (ASD). These conditions, though diverse, have two important things in common: they affect substantial numbers of young people, and they are at least in part influenced by genetics.

Alongside questionnaire data and education records, we also analysed genetic information from participants’ blood samples. From this information, we were able to calculate for each young person a summary score of genetic propensity for experiencing migraines, ADHD, depression, ASD, and for having a higher BMI.

We used these scores to predict the health conditions, rather than relying just on reports from questionnaire data. In this way, we avoided bias due to the impact of the young people’s circumstances, or of their education on their health rather than vice versa.

Even a small increase in school absence predicted worse GCSEs.

We found that, for each extra day per year of school missed in year 10 or 11, a child’s total GCSE points from their best 8 subjects was a bit less than half (0.43) of a grade lower. Higher BMI was related to increased school absence & lower GCSE grades.

Using the genetic approach, we found that young people genetically predisposed towards a higher BMI were more often absent from school, and they did less well in their GCSEs. A standard-deviation increase* in BMI corresponded to 9% more school absence, and GCSEs around 1/3 grade lower in every subject. Together, these results indicate that increased school absence may be one mechanism by which being heavier could negatively impact learning. However, in other analyses, we found a substantial part of the BMI-GCSEs link was not explained by school absence. It’s unclear which other mechanisms are at play here, but work by other researchers has suggested that weight-related bullying, and negative effects of being heavier on young people’s self-esteem, could interfere with learning.

*equivalent to the difference between the median (50th percentile) in population and the 84th percentile of the population

Diagram showing the pathways through which higher BMI could lead to lower GCSEs; either through more schools absence aged 14-16, or other processes such as weight-related bullying.
Our results suggest increased school absence may partly explain impact of higher BMI on educational attainment, but that other processes are also involved.

ADHD was related to lower GCSE grades, but not increased school absence.

In line with previous research, young people genetically predisposed to ADHD did less well in their GCSEs.  Interestingly, they did not have increased school absence, suggesting that ADHD’s impact on learning works mostly through other pathways. This is consistent with previous research highlighting the importance of other factors on the academic attainment of children with ADHD, including expectations of the school environment, teacher views and attitudes, and bullying by peers.

We found little evidence for an impact of asthma, migraines, depression or ASD on school absence or GCSE results

Our genetic analyses found little support for a negative impact of asthma, migraines, depression or ASD on educational attainment. However, we know relatively little about the genetic influences on depression and ASD, especially compared to the genetics of BMI, which we understand much better. This makes genetic associations with depression or ASD difficult to detect. So, our results should not be taken as conclusive evidence that these conditions do not affect learning.

What does this mean for students and teachers?

Our findings provide evidence of a detrimental impact of high BMI and of ADHD symptoms on GCSE attainment, which for BMI was partially mediated by school absence. When students sent home during the pandemic eventually return to school, the impact on their learning will have been enormous.  And while all students will have been affected, our results highlight that young people who are heavier, who have ADHD, or are experiencing other health problems, will likely need extra support.

Further reading

Hughes, A., Wade, K.H., Dickson, M. et al. Common health conditions in childhood and adolescence, school absence, and educational attainment: Mendelian randomization study. npj Sci. Learn. 6, 1 (2021). https://doi.org/10.1038/s41539-020-00080-6

A version of this blog was posted on the journal’s blog site on 21 Jan 2021.

Contact the researchers

Amanda Hughes, Senior Research Associate in Epidemiology: amanda.hughes@bristol.ac.uk

How has the COVID-19 lockdown affected children born with a cleft lip/palate?

Written by the Cleft Collective Team

Follow the Cleft Collective on twitter.

The COVID-19 pandemic has been difficult for many families and there is widespread concern about how the lockdown might have affected children’s health, wellbeing and education. This concern may be even greater for families of children with pediatric health conditions such as cleft lip and/or cleft palate.

The Cleft Collective cohort study, linked to the IEU, is a UK-wide research study of the causes and consequences of being born with a cleft, which is a gap in the lip or roof of the mouth. In response to the COVID-19 lockdown, the Cleft Collective team sent out a questionnaire asking parents about how the lockdown had affected their children’s surgeries and treatments, access to schooling and wellbeing.

The first results are summarised in this infographic, which highlights that many children suffered delays in their surgeries and other health care appointments due to the lockdown. They also struggled with homeschooling, worries and negative emotions.

Through links to the NHS cleft teams and the Cleft Lip and Palate Association charity (CLAPA), the Cleft Collective team are sharing their findings with healthcare professionals to help ensure that children born with a cleft are given appropriate support to help them through this time and to lead happy, healthy childhoods.

The Cleft Collective cohort study is based in the MRC Integrative Epidemiology Unit and funded by the Scar Free Foundation and the University of Bristol. The video below explains more about the study.