SPLaT_ER: An EHR review of long COVID coding in CYP V 1.0
Research type
Research Study
Full title
SPLaT_ER - Symptom patterns and life with post-acute COVID-19 in children and young people: An Electronic healthcare Records review of long-COVID coding in primary care compared with long-COVID identified by questionnaire
IRAS ID
331659
Contact name
Glenys Gillian Somayajula
Contact email
Sponsor organisation
Keele University
Duration of Study in the UK
0 years, 5 months, 13 days
Research summary
Research Summary
Why are we doing this study?
We know that long COVID (symptoms after COVID-19 that continue for more than four weeks) is common in adults but less is known about this in children. We also know that many more people report having long COVID than is recorded in their general practice health records. We suspect that this is also true for children, but we don’t know this.
What are we going to do?
There is already an existing study called SPLaT-19_C, recruiting through West Midland GP practices, which asked children aged 8-17 years old (or their parents/ carers) if they had COVID-19 and whether they had any long-lasting symptoms.
This new study will ask these children (or their parents/ carers) for permission to link this existing study with children’s general practice (GP) electronic health records to see if COVID-19 and long COVID are being recorded in children’s general practice records and to compare this to the information we have from the answers from questionnaires in the existing study. We are planning to take 6 months to run this study and then around two to three months afterwards to write up our findings and tell people about them.
How will this help?
It is important to know how well medical records agree with what patients tell us has happened, as anonymised medical records are often used in research to describe how many people are affected by medical conditions and to what extent. We need to know how well GP medical records agree with what children and young people have told us in the questionnaire about symptoms following COVID-19. This will help us understand about long COVID in children's GP records and design better services to support children with long COVID.
Lay Summary of Results
Some children and young people continue to feel unwell for a long time after catching COVID 19. This is often called Long Covid, which means symptoms lasting weeks or months after the initial infection. Examples include tiredness, pain, breathlessness, headaches, and difficulty concentrating.
Doctors in the UK keep records of patient care in electronic systems called electronic healthcare records (EHRs). These records use medical “codes” to describe diagnoses and test results. Many research studies use EHRs to understand how common diseases are and how people are treated.
However, it is not clear how well Long Covid and COVID 19 infections in children are recorded in these records. This study aimed to find out how often COVID 19 and Long Covid were recorded in children’s primary care records, and how this compared with what children and families reported themselves in questionnaires.Who took part?
The study included 57 children and young people aged between 8 and 17 years. All had previously taken part in a research study about COVID 19 symptoms (the SPLaT 19_C study) and agreed that their GP (family doctor) records could be used and linked to their questionnaire answers.
What did we look at?
We searched each participant’s GP EHR for any medical codes showing:
• Acute COVID 19 (a recent or short-term COVID 19 infection), and
• Long Covid (ongoing symptoms following COVID 19).
We then compared what we found in GP records with what the children or their parents reported in questionnaires about whether they had COVID 19 and whether their symptoms lasted a long time.What did we find?
• COVID 19 infections were sometimes missing from GP records, especially after early 2022.
o About 8 out of 10 children (83%) reported having had COVID 19 in questionnaires.
o Around 7 out of 10 (74%) had a COVID 19 medical code recorded in their GP notes.
o Most GP medical codes related to positive COVID-19 test results rather than from patients attending a GP surgery and doctor diagnosing COVID-19 (77%).
• Long Covid was rarely recorded in GP records, even when children reported long lasting symptoms.
o 42% of children said they had symptoms lasting more than 4 weeks after COVID 19.
o Only 2 children (3.5%) also had Long Covid recorded in their GP records, both were girls.
• Both children with Long Covid recorded by their GP also reported long-lasting symptoms in questionnaires, but many children who self-reported Long Covid had no GP record of it.
• After January 2022, no COVID 19 or Long Covid codes were found in GP records, even though children continued to report COVID 19 infections. This may be because testing, reporting, and healthcare use changed once lockdowns ended.What does this mean?
This study suggests that Long Covid in children is greatly under recorded in GP electronic records. This means that using GP records alone for research studies is likely to miss many children who are affected.
GP records may still be useful for research, especially for more severe cases, but they do not capture the full picture of how many children experience Long Covid. Relying only on these records could underestimate how common the condition is and may affect planning of healthcare services.Why is this important?
Understanding how illnesses are recorded helps researchers and the NHS make better decisions. This study shows that:
• Listening to what children and families tell us about Long Covid in children is very important as GP records don’t tell us the full picture.
• Future research should consider combining GP records with reports from children and families for Long Covid in children, especially when finding milder cases is important.
• Better recognition and recording of Long Covid in children in GP records may help improve care and support.
This information can help shape future research studies and improve understanding of how Long Covid affects children and young people.More details can be found on the project webpage which will be updated with the final publication here: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fwww.keele.ac.uk%252Fctu%252Fresearchportfolio%252Factiveresearch%252Fsplat%252Fsplat-19er%252F%2FNBTI%2FQo3FAQ%2FAQ%2F4055a5e6-97f6-4fba-89e3-109bf291851b%2F2%2F8RYh330uJY&data=05%7C02%7Coxfordc.rec%40hra.nhs.uk%7Cc3795d1c426b40539f6708deb8e020e2%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639151469930271276%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=KGxCXO%2F%2B5VKX0UO0nPtoihLnhDl9oxmcv8uZiug7AHQ%3D&reserved=0
REC name
South Central - Oxford A Research Ethics Committee
REC reference
24/SC/0026
Date of REC Opinion
30 Jan 2024
REC opinion
Further Information Favourable Opinion