Prevalence and co-occurrence of cognitive impairment in children and young people up to 12-months post infection with SARS-CoV-2 (Omicron variant).

BACKGROUND: Cognitive impairment is often reported after SARS-CoV-2 infection, yet evidence gaps remain. We aimed to (i) report the prevalence and characteristics of children and young people (CYP) reporting "brain fog" (i.e., cognitive impairment) 12-months post PCR-proven SARS-CoV-2 infection and determine whether differences by infection status exist and (ii) explore the prevalence of CYP experiencing cognitive impairment over a 12-month period post-infection and investigate the relationship between cognitive impairment and poor mental health and well-being, mental fatigue and sleep problems. METHODS: The Omicron CLoCk sub-study, set up in January 2022, collected data on first-time PCR-test-positive and PCR-proven reinfected CYP at time of testing and at 3-, 6- and 12-months post-testing. We describe the prevalence of cognitive impairment at 12-months, indicating when it was first reported. We characterise CYP experiencing cognitive impairment and use chi-squared tests to determine whether cognitive impairment prevalence varied by infection status. We explore the relationship between cognitive impairment and poor mental health and well-being, mental fatigue and trouble sleeping using validated scales. We examine associations at 3-, 6- and 12-months post-testing by infection status using Mann-Whitney U and chi-square tests. RESULTS: At 12-months post-testing, 7.0 % (24/345) of first-positives and 7.5 % (27/360) of reinfected CYP experienced cognitive impairment with no difference between infection-status groups (p = 0.78). The majority of these CYP experienced cognitive impairment for the first time at either time of testing or 3-months post-test (no difference between the infection-status groups; p = 0.60). 70.8 % of first-positives experiencing cognitive impairment at 12-months, were 15-to-17-years-old as were 33.3 % of reinfected CYP experiencing cognitive impairment (p < 0.01). Consistently at all time points post-testing, CYP experiencing cognitive impairment were more likely to score higher on all Strengths and Difficulties Questionnaire subscales, higher on the Chalder Fatigue sub-scale for mental fatigue, lower on the Short Warwick-Edinburgh Mental Wellbeing Scale and report more trouble sleeping. CONCLUSIONS: CYP have a fluctuating experience of cognitive impairment by 12-months post SARS-CoV-2-infection. Cognitive impairment is consistently correlated with poorer sleep, behavioural and emotional functioning over a 12-month period. Clinicians should be aware of cognitive impairment post-infection and its co-occurring nature with poorer sleep, behavioural and mental health symptoms.

Post-Covid-19 condition (Long Covid) in children and young people 12 months after infection or reinfection with the Omicron variant: a prospective observational study.

Our previous study in children and young people (CYP) at 3- and 6-months post-infection showed that 12-16% of those infected with the Omicron (B.1.1.529) variant of SARS-CoV-2 met the research definition of Long Covid, with no differences between first-positive and reinfected CYP. The primary objective of the current study is to explore the impact of the Omicron variant of SARS-CoV-2 infection on young people 12 months post infection. 345 CYP aged 11-17 years with a first laboratory-confirmed infection with the Omicron variant and 360 CYP reinfected with the Omicron variant completed an online questionnaire assessing demographics, symptoms, and their impact shortly after testing and again at 3-, 6-and 12-months post-testing. Vaccination status was determined from information held at UKHSA. Comparisons between groups were made using chi-squared, Mann-Whitney U, and Kruskal-Wallis tests. The most common symptoms in first-positive and reinfected CYP 12-months post-testing were tiredness (35.7 and 33.6% respectively) and sleeping difficulties (27.5 and 28.3% respectively). Symptom profiles, severity and impact were similar in the two infection status groups. Overall, by 12-months, 17.4% of first-positives and 21.9% of reinfected CYP fulfilled the research consensus Long Covid definition (p = 0.13). 12-months post Omicron infection, there is little difference between first-positive and reinfected CYP with respect to symptom profiles and impact. Clinicians may not therefore need to consider number of infections and type of variant when developing treatment plans. Further studies are needed to assess causality of reported symptoms up to 12-months after SARS-CoV-2 infection.

A review of post COVID syndrome pathophysiology, clinical presentation and management in children and young people.

Post Covid Syndrome (PCS) is a complex multi-system disorder with a spectrum of presentations. Severity ranges from mild to very severe with variable duration of illness and recovery. This paper discusses the difficulties defining and describing PCS. We review the current understanding of PCS, epidemiology, and predisposing factors. We consider potential mechanisms including viral persistence, clotting dysfunction and immunity. We review presentation and diagnosis and finally consider management strategies including addressing symptom burden, rehabilitation, and novel therapies.

Core outcome measurement set for research and clinical practice in post-COVID-19 condition (long COVID) in children and young people: an international Delphi consensus study "PC-COS Children".

The coronavirus disease 2019 (COVID-19) pandemic substantially impacted different age groups, with children and young people not exempted. Many have experienced enduring health consequences. Presently, there is no consensus on the health outcomes to assess in children and young people with post-COVID-19 condition. Furthermore, it is unclear which measurement instruments are appropriate for use in research and clinical management of children and young people with post-COVID-19. To address these unmet needs, we conducted a consensus study, aiming to develop a core outcome set (COS) and an associated core outcome measurement set (COMS) for evaluating post-COVID-19 condition in children and young people. Our methodology comprised of two phases. In phase 1 (to create a COS), we performed an extensive literature review and categorisation of outcomes, and prioritised those outcomes in a two-round online modified Delphi process followed by a consensus meeting. In phase 2 (to create the COMS), we performed another modified Delphi consensus process to evaluate measurement instruments for previously defined core outcomes from phase 1, followed by an online consensus workshop to finalise recommendations regarding the most appropriate instruments for each core outcome. In phase 1, 214 participants from 37 countries participated, with 154 (72%) contributing to both Delphi rounds. The subsequent online consensus meeting resulted in a final COS which encompassed seven critical outcomes: fatigue; post-exertion symptoms; work/occupational and study changes; as well as functional changes, symptoms, and conditions relating to cardiovascular, neuro-cognitive, gastrointestinal and physical outcomes. In phase 2, 11 international experts were involved in a modified Delphi process, selecting measurement instruments for a subsequent online consensus workshop where 30 voting participants discussed and independently scored the selected instruments. As a result of this consensus process, four instruments met a priori consensus criteria for inclusion: PedsQL multidimensional fatigue scale for "fatigue"; PedsQL gastrointestinal symptom scales for "gastrointestinal"; PedsQL cognitive functioning scale for "neurocognitive" and EQ-5D for "physical functioning". Despite proposing outcome measurement instruments for the remaining three core outcomes ("cardiovascular", "post-exertional malaise", "work/occupational and study changes"), a consensus was not achieved. Our international, consensus-based initiative presents a robust framework for evaluating post-COVID-19 condition in children and young people in research and clinical practice via a rigorously defined COS and associated COMS. It will aid in the uniform measurement and reporting of relevant health outcomes worldwide.

Fifteen-minute consultation: Managing post-COVID-19 syndrome (long COVID) in children and young people.

Post-COVID-19 syndrome is a new condition that can have a major impact on the physical and mental well-being of children and young people, affecting their ability to access activities including education. Paediatricians and general practitioners need to be able to assess and manage patients with this condition; making the diagnosis, excluding serious pathology, managing comorbidities and accessing appropriate management are crucial. This 15 minute consultation presents an approach to history taking, examination, investigations, management principles and referrals.

Children and Young People with Long COVID-Comparing Those Seen in Post-COVID Services with a Non-Hospitalised National Cohort: A Descriptive Study.

BACKGROUND: Post-COVID services have been set up in England to treat children with ongoing symptoms of Long COVID. To date, the characteristics of children seeking treatment from these services has not been described. PURPOSE: (1) to describe the characteristics of children aged 11-17 referred to the Pan-London Post-COVID service and (2) to compare characteristics of these children with those taking part in the United Kingdom's largest research study of Long COVID in children (CLoCk). DESIGN: Data from 95 children seeking treatment from the Post-COVID service between May 2021 and August 2022 were included in the study. Their demographic characteristics, symptom burden and the impact of infection are described and compared to children from CLoCk. RESULTS: A high proportion of children from the Post-COVID service and CLoCk reported experiencing health problems prior to the pandemic. Almost all Post-COVID service children met the research Delphi definition of Long COVID (94.6%), having multiple symptoms that impacted their lives. Symptoms were notably more severe than the participants in CLoCk. CONCLUSIONS: This study describes the characteristics of children seeking treatment for Long COVID compared to those identified in the largest longitudinal observational study to date. Post-COVID service children have more symptoms and are more severely affected by their symptoms following infection with COVID-19 than children in the CLoCk study. Research to understand predisposing factors for severity and prognostic indicators is essential to prevent this debilitating condition. Evaluation of short- and long-term outcomes of interventions by clinical services can help direct future therapy for this group.

The CLoCk study: A retrospective exploration of loneliness in children and young people during the COVID-19 pandemic, in England.

BACKGROUND: During the COVID-19 pandemic children and young people (CYP) were socially restricted during a stage of life crucial to development, potentially putting an already vulnerable population at higher risk of loneliness, social isolation, and poorer wellbeing. The objectives of this study are to conduct an exploratory analysis into loneliness before and during the pandemic, and determine which self-reported factors are associated with loneliness. METHODS AND FINDINGS: Participants from The Children with Long COVID (CLoCk) national study were invited to take part via an online survey, with a total of 31,017 participants taking part, 31,016 of which reported on their experience of loneliness. Participants retrospectively answered questions on demographics, lifestyle, physical health and mental health and loneliness before the pandemic and at the time of answering the survey. Before the pandemic 6.5% (2,006/31,016) of participants reported experiencing loneliness "Often/Always" and at the time of survey completion 17.4% (5,395/31,016) reported feeling lonelier. There was an association between meeting the research definition of long COVID and loneliness [3.49 OR, 95%CI 3.28-3.72]. CYP who reported feeling lonelier at the time of the survey than before the pandemic were assigned female at birth, older CYP, those from Black/African/Caribbean/Black British or other ethnicity groups, those that had 3-4 siblings and lived in more deprived areas. CONCLUSIONS: We demonstrate associations between multiple factors and experiences of loneliness during the pandemic. There is a need for a multi-faceted integrated approach when developing interventions targeted at loneliness. It is important to follow up the CYP involved at regular intervals to investigate the progression of their experience of loneliness over time.

Symptom Profiles of Children and Young People 12 Months after SARS-CoV-2 Testing: A National Matched Cohort Study (The CLoCk Study).

BACKGROUND: Although 99% of children and young people have been exposed to SARS-CoV-2, the long-term prevalence of post-COVID-19 symptoms in young people is unclear. The aim of this study is to describe symptom profiles 12 months after SARS-CoV-2 testing. METHOD: A matched cohort study of a national sample of 20,202 children and young people who took a SARS-CoV-2 PCR test between September 2020 and March 2021. RESULTS: 12 months post-index-test, there was a difference in the number of symptoms reported by initial negatives who never tested positive (NN) compared to the other three groups who had at least one positive test (p < 0.001). Similarly, 10.2% of the NN group described five-plus symptoms at 12 months compared to 15.9-24.0% in the other three groups who had at least one positive test. The most common symptoms were tiredness, sleeping difficulties, shortness of breath, and headaches for all four groups. For all these symptoms, the initial test positives with subsequent reports of re-infection had higher prevalences than other positive groups (p < 0.001). Symptom profiles, mental health, well-being, fatigue, and quality of life did not vary by vaccination status. CONCLUSIONS: Following the pandemic, many young people, particularly those that have had multiple SARS-CoV-2 positive tests, experience a range of symptoms that warrant consideration and potential investigation and intervention.

Long COVID in Children and Young after Infection or Reinfection with the Omicron Variant: A Prospective Observational Study.

To describe the prevalence of long COVID in children infected for the first time (n = 332) or reinfected (n = 243) with Omicron compared with test-negative children (n = 311). Overall, 12%-16% of those infected with Omicron met the research definition of long COVID at 3 and 6 months after infection, with no evidence of difference between cases of first positive and reinfected (Pχ2 = 0.17).

Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study.

OBJECTIVES: Primary objective: to determine the point prevalence and incidence rate of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children aged 5-16 years over 13 months. SECONDARY OBJECTIVES: to describe the demographic features, symptoms, impact on activities of daily living, school attendance and time to diagnosis. DESIGN: Prospective surveillance study conducted by the British Paediatric Surveillance Unit. Paediatricians was asked if they had assessed a child with severe ME/CFS (screening definition for prevalence and incidence: children (5-16 years) diagnosed with ME/CFS so severe that they are unable to attend school for more than 1 hour a week during the last 6 weeks of the school term). PARTICIPANTS: Patients 5-16 years of age, seen by paediatricians and two large ME/CFS specialist services across the UK and Ireland. OUTCOME MEASURES: Paediatrician-completed questionnaires describing demographics, symptoms, function and treatment, (applying National Institute for Health and Care Excellence (NICE)-recommended criteria to assess severity of ME/CFS). Diagnosis of severe, probable severe or possible severe ME/CFS was made only with evidence of NICE-recommended screening blood tests. RESULTS: 285 cases were reported, of which of which 33 were severe, 4 probable severe and 55 possible severe. Estimated prevalence was 3.2 per million children (95% CI 2.2 to 4.5). Including possible/probable severe ME/CFS gave 8.9 per million children (95% CI 7.2 to 11). The incidence rate was 0.90 per million children-years (95% CI 0.43 to 1.65) (1.97 per million children-years (95% CI 1.24 to 2.99)). Median age was 13 years and 58% of cases were female. Median time to diagnosis was 0.47 years. CONCLUSIONS: Although the incidence of children presenting with severe ME/CFS is low, all were very disabled. In addition, the majority receive little or no education. Paediatricians need to consider how to provide rehabilitation and education for these disabled young people.

Goal-based measurement in paediatric settings: implications for practice.

There is an observed link between physical illness and mental health difficulties and an increased likelihood of mental health difficulties in young people with chronic health conditions. The main outcome focus in paediatric settings is on physical health outcomes and functioning. In terms of functioning, the focus is on quality of life, measures of emotional well-being and perceptions of personal change, which are likely to be multifaceted and vary between patients. To complement standardised and diagnostically based measures, goal-based outcome measurement may be considered. The aim of this paper is to build on previous research, to provide a reflective commentary based on the authors' clinical and research experience in the use and interpretation of goal-based outcomes, to address what using goal-based measures for outcome purposes in these settings means practically. Examples are provided to demonstrate the importance of considering meaningful outcomes of importance to young people and how professionals may presume that physical 'recovery' is the goal of treatment, but what recovery means to that young person may be very nuanced. Further key considerations and suggested phrasing are given to introduce and work with young people's goals.

Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS.

PURPOSE OF THE STUDY: There is limited published data on treatment or outcomes of children and young people (CYP) with moderate or severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Here, we describe outcomes of moderate and severe ME/CFS in CYP treated in a tertiary adolescent service. This information is useful when planning services for CYP and families affected by moderate/severe ME/CFS and to guide future management trials and commissioning decisions. STUDY DESIGN: A retrospective review was conducted of medical records of the 27 CYP who received ward-based treatment in 2015. Notes were retrospectively reviewed to assess progress in four markers of wellbeing over the period of treatment: (i) mobility, (ii) education, (iii) sleep and (iv) involvement in social/recreational activities. RESULTS: A total of 23/27 (85%) showed improvement in one or more domains over their period of ward-based therapy. 19/27 (70%) of patients showed improvement in physical ability. In 15/23 patients (65%), there was an improvement in ability to access education, in 12/24 (50%) sleep improved, and 16/27 (59%) demonstrated an improvement in socialising/ability perform recreational activities. CONCLUSION/IMPLICATIONS: A multidisciplinary hospital-based rehabilitation programme for moderate and severe ME/CFS was associated with improvement in at least one area of wellbeing in 85% of the CYP we reviewed. These data may be used as a baseline to evaluate the impact of other models of delivering care for this patient group. It may be useful when considering other groups such as those affected by Post-COVID Syndrome.

Discharge outcome analysis of 1089 transgender young people referred to paediatric endocrine clinics in England 2008-2021.

INTRODUCTION: The destination of transgender and gender variant young people referred by the National Health Service (NHS) Gender Identity Development Service (GIDS) to, and discharged from the two English paediatric endocrine liaison clinics is not known. METHODS: 1151 young people referred after full assessment by the GIDS; 827 to University College London Hospital since 2008; 324 to Leeds Children's Hospital since 2013. Discharge categorisation was by agreed criteria. Eleven emigrated and 51 self-discharged. 1089 had known outcomes. RESULTS: 999/1089 (91.7%) continued identifying as gender variant. 867/999 (86.8%) were discharged to adult gender identity clinics (GICs). 166/867 (19.1%) of these were <16 years and 701/867 (80.9%) ≥16 years at initial endocrine referral. No sex differences were seen. 38/999 (3.8%) opted for non-NHS services.90/1089 ceased identifying as gender variant. In 32/1089 (2.9%), this was subsequent to their first clinic appointment.58/1089 (5.3%) stopped treatment either with the gonadotropin releasing hormone analogue (GnRHa) or gender-affirming hormones (GAH) and reverted to their birth gender: <16 years (20/217; 9.2%); ≥16 years (38/872; 4.4%).Subdividing further, 16/217 (7.4%) <16 years ceased GnRHa and 4/217 (1.8%) after GAH. Of those ≥16 years, 33/872 (3.8%) ceased GnRHa and 5/872 (0.6%) GAH. CONCLUSIONS: At discharge, 91.7% continued as transgender or gender variant, 86.8% sought ongoing care through NHS GICs. 2.9% ceased identifying as transgender after an initial consultation prior to any endocrine intervention and 5.3% stopped treatment either with GnRHa or GAH, a higher proportion in the <16 year compared with the ≥16 year groups.

Virtual Consultations: Young People and Their Parents' Experience.

PURPOSE: Evaluate the experience of virtual consultations for young people and their families and assess whether young people are being offered a confidential space as part of these virtual encounters. PATIENTS AND METHODS: An anonymous online survey was sent to young people age 10-18 y.o. who had experienced at least one virtual consultation with an adolescent medicine tertiary service in the United Kingdom between March 13th and June 13th 2020 mostly associated with, but not exclusively, management of chronic fatigue syndrome or medically unexplained symptoms. Responses from the survey were analysed by two authors who independently coded the common themes reported by the participants. RESULTS: Fifty young people and their families participated in the survey. Eighty-eight percent reported feeling prepared for virtual appointments, 90% found them helpful, 88% felt that they were private and 86% reported they would find further virtual appointments helpful. Positive impacts reported were no need to travel (38%) and the continuity of care (36%). Many of our participants reported no negative impact (39%) and felt that nothing needed to be improved (56%). The most frequent improvement reported was the provision of a quality video call (34%). Only 36% of young people had the opportunity to speak in confidence to the health care provider without their parents' presence. CONCLUSION: Virtual appointments are perceived as safe and helpful by the young people and their families. Professionals should offer a confidential remote space for young people to speak without their parents.

How fair is our service? Evaluating access to specialist paediatric care.

OBJECTIVE: To assess equity of access to paediatric outpatient clinics in our hospital. DESIGN/SETTING: Retrospective analysis of consecutive accepted referrals to allergy, asthma, epilepsy, general paediatrics, rapid access, chronic fatigue syndrome, diabetes and endocrine outpatient clinics. PATIENTS: 32 369 new patients, April 2007 to June 2018. RESULTS: Among local patients (58.1%) 0.2%-2.5% of patients referred to each clinic lived in the least deprived quintile, and 43.5%-48.4% in the most deprived quintile-similar to inpatient admissions and the local population. Tertiary clinics showed a much higher proportion of patients from the least deprived quintiles (15.9%-26.2%). CONCLUSIONS: Local outpatient referrals broadly reflected the socioeconomic distribution, although not necessarily the distribution of need, of our local population. A relatively high proportion of patients in tertiary clinics were from more affluent postcodes, highlighting the need for referral inequalities to be evaluated across networks or regions.

Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?

PURPOSE OF REVIEW: The current review aims to determine the recent evidence regarding cause, impact, effective treatment and prognosis of children and young people (CYP) affected by chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) at a time when the National Institute for Clinical Excellence guidelines in the United Kingdom are being reviewed and more research is called for worldwide. RECENT FINDINGS: CFS/ME is a debilitating illness with no clear cause. This review describes the heterogeneous clinical picture and the effects on the young person and family. Comorbidities such as mood disorders and pain are discussed including evidence for treatment. The various aetiological hypotheses are discussed and the precipitating factors identified. The evidence base is limited regarding effective treatment for CYP with CFS/ME, particularly the severely affected group. A large trial of online cognitive behavioural therapy with teenagers is being explored in the United Kingdom. The Lightning Process has been shown to be effective when added to medical care. SUMMARY: Current evidence is hampered by different diagnostic criteria, the heterogeneous nature of the condition, and limited number of small studies. There is a clear need for more research and larger studies exploring the cause of and most effective treatment for CYP with CFS/ME.

Fifteen-minute consultation: Communicating with young people-how to use HEEADSSS, a psychosocial interview for adolescents.

Adolescents undergo a period of biological, social and psychosocial development, and each of these domains impacts each other. Psychosocial areas of concern often emerge over the adolescent period (such as mental health conditions, drug use and risky sexual behaviour); those with chronic illness being at higher risk. The paper aims to guide health practitioners on when and how to approach the psychosocial interview with young people and assess areas of risk or concern. This will include putting them at ease, developing rapport, seeing them alone and explaining confidentiality before commencing the assessment. Home, Education/Employment, Eating, Activities, Drugs, Sexuality, Suicidal ideation and Safety (HEEADSSS) is a recognised psychosocial interview framework that allows a better understanding of the young person's situation and what their specific needs may be. By exploring each section in turn briefly or more fully, it gives the professional an overall impression of the young person's life and any risky behaviours or concerns. This systematic structure should develop an easily accessible approach to adolescents as a group of patients whatever their developmental stage.