Characterisation and Management of Children and Young People Referred to a Paediatric Tertiary Post-COVID Service, 2025, Goddings+

[SNT Gatchaman]

Characterisation and Management of Children and Young People Referred to a Paediatric Tertiary Post-COVID Service
Anne-Lise Goddings; Rebecca Johnston; Elizabeth Wortley; Ria Patel; Holly Boyd; Fiona Newlands; Roz Shafran; Benjamin Baig; Elizabeth Whittaker; Terry Y. Segal

PURPOSE
Post-COVID condition (PCC) emerged following the 2020 coronavirus pandemic and required rapid service development to manage affected patients. This evaluation describes the demographics, medical background, management and six-month outcomes of children and young people with PCC-related symptoms referred to one specialist tertiary service between June 2020 and August 2022.

METHODS
Data were retrospectively collected from referral information and medical notes.

RESULTS
176 patients (61% female) aged 6–18 years were referred, with a mean 8.2 PCC-related symptoms impacting on functioning (97%) and school attendance (86%). 10% patients had an autistic spectrum disorder diagnosis, above the ∼2% national prevalence, while rates of atopy and mental health were similar to national prevalence. 59% patients were managed in specialist tertiary clinics by clinicians with input from allied health professionals. At 6 month review, 40/73 patients reported improvement in their daily functioning, with 30/73 reporting no change and 3/73 reporting functional deterioration. School attendance increased over 6 months for 43/67 patients, with 12/67 reporting no change and 4/67 reporting reduced school attendance.

DISCUSSION
Patients referred for PCC-related specialist input have significant functional impairment and challenges accessing education. More than half of those seen in specialist clinics showed functional improvement and increased school attendance over 6 months, while a subgroup had persistent symptoms. This suggests that the service model is beneficial for this complex patient group overall, although needs to be resourced for longer input for some. Further work is needed to understand the variability in presentation and symptom course.


Link | PDF (Journal of Adolescent Health) [Open Access]

 

[SNT Gatchaman]

A smaller proportion of referred patients came from the lowest IMD quintile than would be expected based on regional data, despite data suggesting that PCC-related symptoms are more prevalent in patients of low socioeconomic status. This difference may reflect variations in symptom prevalence but is likely also influenced by factors including access to health services, potential barriers to diagnosis, onward referral from secondary paediatric or primary care services, and the intersection between socioeconomic status and ethnicity in the population. It suggests that this specialist service may not be reaching particularly CYP vulnerable groups and further work is needed to ensure that access to these specialist clinics is equitable to the whole population they serve

the proportion of patients referred to clinic who have a confirmed ASD diagnosis (10%) is much higher than population estimates of ~2%

Sixty-one percent of patients were started on medication in clinic including prescriptions to support sleep, pain, cardiac or gastrointestinal symptoms. There were a high number of referrals to a range of other specialists. The diversity of referrals emphasises the heterogeneity of PCC-related symptoms, while the large number of onward referrals may reflect the profession’s initial uncertainty regarding PCC sequelae, including the potential for end-organ damage and the management of dysautonomia, and may be expected to change as our understanding of PCC develops.

Only a small number of patients report worsening impairment after 6 months which can positively reinforce that many CYP experience improving symptoms after developing PCC. However, these functional categories are broad, not linear in severity and may include a diverse set of limitations.

Only 25% patients referred to the Pan-London Post-COVID service were attending school at least half of the week, emphasising the functional impact of PCC on this cohort at a critical point in their educational journey. At 6 months follow-up, nearly 60% patients showed improved school attendance.

This may reflect symptomatic improvement enabling a young person to manage the physical, cognitive and socioemotional demands of school, but also may reflect the role of the specialist healthcare team in liaising with schools to support personalised plans for flexible managed reintegration to education. School attendance does not in itself provide evidence that CYP are accessing learning and maximising school attendance may not necessarily be the primary focus of care where activity levels need to be managed.

There continues to be uncertainty about the pathophysiology of PCC and its potential overlap with ME/CFS with COVID as a precipitating event, and it is not clear how much our data are specific to PCC and can be generalisable to other cohorts. Follow-up data were retrospectively analysed from routinely collected clinical data so are limited to features considered clinically relevant during appointments, particularly reviewing persisting symptoms, rather than documenting the presence/absence of potential symptoms.

 

[Amw66]

A 6 month follow up may be geared to garnering a more positive picture - was this not one of the issues with an EC paper looking at school attendance where 12 month and 6 month results were transposed ?
Perhaps I'm misremembering as sleep is an issue at moment.
ASD prevalence is interesting as it does seem to be more prevalent in support groups - and seems to do this for hypermobility too.

 

[Utsikt]

More than half of those seen in specialist clinics showed functional improvement and increased school attendance over 6 months, while a subgroup had persistent symptoms. This suggests that the service model is beneficial for this complex patient group overall, although needs to be resourced for longer input for some. Further work is needed to understand the variability in presentation and symptom course.

Or they might have improved on their own.

 

[rvallee]

Or they might have improved on their own.

It's in fact the most likely explanation.