UK Children Research Articles

FC 132SHORT COURSE DAILY LOW-DOSE PREDNISOLONE AT THE TIME OF UPPER RESPIRATORY TRACT INFECTION (URTI) IN NON-SELECTED CHILDREN WITH RELAPSING STEROID SENSITIVE NEPHROTIC SYNDROME DOES NOT PREVENT URTI-RELATED RELAPSE: THE PREDNOS 2 TRIAL

Abstract Background and Aims At least 80% of children with steroid sensitive nephrotic syndrome (SSNS) have relapses and many are triggered by upper respiratory tract infections (URTIs). Previous small studies (4 studies, 232 patients in total), mostly in children already taking maintenance corticosteroid in countries where URTI epidemiology is different to Europe, showed that giving daily low-dose prednisolone for 5-7 days during an URTI reduces the risk of relapse. The objective of the PREDNOS 2 trial was to determine if these findings were replicated in a large UK population of children with relapsing SSNS on different background medication or none. Method A randomised, double-blind, placebo-controlled trial, including a model-based economic evaluation was carried out in 122 UK paediatric departments. Between February 2013 and January 2019, 365 children with relapsing SSNS (mean age: 7.6 ± 3.5 y) were recruited from 91 sites and randomised (1:1) according to a minimisation algorithm based on background treatment (no background treatment; low-dose prednisolone only; low-dose prednisolone and other immunosuppression; other immunosuppression only). At the start of an URTI, children received 6 days of prednisolone 15 mg/m2 or matching preparation of placebo. Those already taking alternate day prednisolone rounded their daily dose using trial medication to the equivalent of 15 mg/m2 or their alternate-day dose, whichever was the greater. The primary outcome was the incidence of first URTI-related relapse (URR) following any URTI over 12 months. Secondary outcomes were the overall rate of relapse, changes in background treatment, cumulative dose of prednisolone, rates of serious adverse events, incidence of corticosteroid adverse effects, change in Achenbach Child Behaviour Checklist score and quality of life. Analysis was by intention to treat. The economic evaluation used trial data and a decision-analytic model to estimate Quality-Adjusted-Life-Years (QALYs) and costs at 1-year, which were then extrapolated over 16 years. Results 80 children completed 12 m follow-up without an URTI. Consent was withdrawn for 32 children, 14 prior to an URTI, leaving a modified intention to treat analysis population of 271 children (134 and 137 in prednisolone and placebo arms respectively). There were 384 URTIs and 82 URRs in the prednisolone arm, and 407 URTIs and 82 URRs in the placebo arm. The number of patients experiencing a URR was 56 (42.7%) and 58 (44.3%) in the prednisolone and placebo arms respectively (adjusted risk difference: -0.024, 95% CI: -0.14 to 0.095; P=0.7). There was no evidence that the treatment effect differed when data were analysed according to background treatment. There were no significant differences in secondary outcomes between treatment arms. A post-hoc subgroup analysis assessing primary outcome in 58 children of South Asian ethnicity (RR 0.66, 95% CI: 0.396 to 1.105) versus 213 of other ethnicity (RR 1.11, 95% CI: 0.806 to 1.535) showed possible efficacy of intervention in those of South Asian ethnicity (test for interaction P=0.09). Giving daily prednisolone at the time of an URTI was found to increase QALYs and decrease overall costs, when compared to standard care, a finding that was robust to sensitivity analysis. Conclusion In a large and methodologically-robust study, PREDNOS 2 has shown that giving 6 days of daily low-dose prednisolone at the time of an URTI does not reduce the risk of relapse of nephrotic syndrome in UK children, but could offer a cost-effective use of health care resources. Further work is needed to investigate inter-ethnic differences in treatment response, and the pathogenesis of individual viral infections and their effect on nephrotic syndrome.

Lung function in children with cystic fibrosis in the USA and UK: a comparative longitudinal analysis of national registry data

RationaleA previous analysis found significantly higher lung function in the US paediatric cystic fibrosis (CF) population compared with the UK with this difference apparently decreasing in adolescence and adulthood. However,...

Traumatic and non-traumatic dental presentations to the paediatric emergency departments of two UK children's hospitals: A multi-centre evaluation.

Dental attendances to paediatric emergency departments (PEDs) represent suboptimal use of resources of an unknown scale. To evaluate dental attendances at two PEDs in the UK and compare traumatic dental injury (TDI) and non-traumatic dental conditions (NTDCs). Retrospective data were collected for a 12-month period including demographics, attendance pattern, assessment, and management. Maxillofacial conditions were excluded, and attendances were grouped as TDI and NTDC. Of 667 attendances, 35.1% (n=234) were TDI and 64.9% (n=433) NTDC. Nineteen children reattended. Proportionately, more TDI attenders were male, White British, of lower mean age, and resided in less deprived areas than NTDCs. Over half (52.3%, n=339) of attendees resided in the 10% most deprived UK areas. Saturday and Monday were modal attendance days; attendance peaked in summer. Over half (56.4%, n=376) attended out of hours. A majority (74.8%, n=499) self-referred and half accessed no other service prior to PED attendance. No PED dental input was received for 38.7% (n=258), and dental treatment was received for 12.4% (n=83). Antibiotics were provided for 42.1% (n=281), and 15.4% (n=103) were admitted. Dental abscesses and toothache accounted for half of attendances, many of these children may be managed in primary care. Improved signposting to alternative dental services for non-urgent conditions may better allocate resources to those with urgent need.

Sex, ethnic and socioeconomic inequalities and trajectories in child and adolescent mental health in Australia and the UK: findings from national prospective longitudinal studies.

This study investigates the sex, ethnic and socioeconomic inequalities in emotional difficulties over childhood and adolescence using longitudinal cohort studies in the UK and Australia. Estimating cross-national differences contributes to understanding of the consistency of inequalities in mental health across contexts. Data from 19,748 participants in two contemporary representative samples in Australia (Growing Up in Australia: The Longitudinal Study of Australian Children, n=4,975) and UK (Millennium Cohort Study, n=14,773) were used. Emotional difficulties were assessed using the parent-reported Strengths and Difficulties Questionnaire at ages 4/5, 6/7, 11/12 and 14/15years and the self-reported Short Moods and Feelings Questionnaire at age 14/15. Latent Growth Curve Modelling was used to examine mental health over time. There were significant increases in emotional difficulties in both countries over time. Emotional difficulties were higher in Australian children at all ages. The gender gap in self-reported depressive symptoms at age 14/15 was larger in the UK (8% of UK and 13% of Australian boys were above the depression cut-off, compared with 23% of girls). Ethnic minority children had higher emotional difficulties at age 4/5years in both countries, but over time this difference was no longer observed in Australia. In the UK, this reversed whereby at ages 11/12 and 14/15 ethnic minority children had lower symptoms than their White majority peers. Socioeconomic differences were more marked based on parent education and employment status in Australia and by parent income in the UK. UK children, children from White majority ethnicity and girls evidenced steeper worsening of symptoms from age 4/5 to 14/15 years. Even in two fairly similar countries (i.e. English-speaking, high-income, industrialised), the observed patterns of inequalities in mental health symptoms based on sociodemographics are not the same. Understanding country and context-specific drivers of different inequalities provides important insights to help reduce disparities in child and adolescent mental health.

The Changing Nature of Ministry amongst Children and Families in the UK during the Covid-19 Pandemic

Empirical data was gathered from parents, grandparents, and practitioners, which revealed the impact of Covid-19 on UK children and family ministry. Prevailing restrictions and associated needs caused significant change in the nature of this ministry, and may not be temporary. Key observations were reduction in engagement of families with the church, shift in the volunteer structure for church-based children’s activities, increased focus on family faith formation activities, and diversified individual faith journeys of children.

Implementation of multidisciplinary reflective rounds within a children's hospital before and during the COVID-19 pandemic.

AimRegular reflective practice within a large group setting has been shown to reduce levels of burnout in healthcare professionals. We describe how regular reflective rounds were designed and implemented within an existing educational program at a UK children's hospital and report on the feedback received from participants.MethodsEight face‐to‐face reflective rounds took place in Southampton Children's Hospital, UK, from September 2017 to February 2020 with a further virtual round in July 2020 during the COVID‐19 pandemic. Each round was facilitated by a clinical psychologist and consultant. For each round, up to three volunteer panellists from different staff groups were invited to share their personal experiences on a pre‐selected subject to the large group. The group would then contribute to the discussion by offering their own reflections. Feedback forms were distributed to attendees and collated.ResultsEight rounds were held with mean attendance of 32 (range 19–47). Across the eight rounds, the total attendance was 256 staff members. The virtual round had 20 participants. Feedback was received from 202 participants. The majority (98%) would recommend the rounds to colleagues with 64 participants (32%) rating the rounds as ‘exceptional’ and 91 (45%) as ‘excellent’. The virtual round received similar positive feedback.ConclusionLarge group reflective practice can be implemented within an existing regular educational program. Rounds have been well received by participants and are likely to be of relevance and value to other healthcare groups. The rounds can also be delivered effectively virtually, which may increase participation.

Food environment intervention improves food knowledge, wellbeing and dietary habits in primary school children: Project Daire, a randomised-controlled, factorial design cluster trial

BackgroundEvidence suggests that dietary intake of UK children is suboptimal. As schools provide an ideal natural environment for public health interventions, effective and sustainable methods of improving food knowledge and dietary habits in this population must be identified. Project Daire aimed to improve children’s health-related quality of life, wellbeing, food knowledge and dietary habits via two multi-component interventions.MethodsDaire was a randomised-controlled, factorial design trial evaluating two interventions across four arms. Primary schools in Northern Ireland were randomised to one of four 6-month intervention arms: i) ‘Nourish’, ii) ‘Engage’, iii) ‘Nourish’ and ‘Engage’ and iv) Control (Delayed). ‘Nourish’ was an intervention aiming to alter the whole-school food environment, provide food-related experiences and exposure to locally produced foods. ‘Engage’ was an age-appropriate, cross-curricular educational intervention on food, agriculture, nutrition science and related careers. Primary outcomes were emotional and behavioural wellbeing and health-related quality of life. A number of secondary outcomes, including dietary intake, cooking competence and food-related knowledge, were also measured.ResultsFifteen schools from areas of varying socio-economic status participated in the randomised trial. A total of 903 (n = 445 aged 6–7 years and n = 458 aged 10–11 years) primary school pupils took part. Total Difficulties Score improved in all pupils (6–7 and 10–11 year old pupils) who received the ‘Nourish’ intervention compared with those that did not (adjusted difference in mean = − 0.82; 95% CI -1.46, − 0.17; P < 0.02). No statistically significant difference in Health-Related Quality of Life was observed. The ‘Nourish’ intervention also produced some changes in school-based dietary behaviour, which were most apparent in the 10–11 year old pupils. The ‘Nourish’ intervention also produced improvements in understanding of food labels (adjusted difference in mean = 0.15; 95% CI 0.05, 0.25; P < 0.01) and knowledge of vegetables in season (adjusted difference in mean = 0.29; 95% CI 0.01,0.56; P = 0.04) whilst an increased willingness to try new foods and improved perceived cooking competence was also observed.ConclusionsImprovements in childhood emotional and behavioural wellbeing, dietary intake, knowledge about food, cooking skills and willingness to try new foods were associated with the ‘Nourish’ whole-school food environment intervention. Exploration of the sustainability and long-term effectiveness of such whole-school food interventions should be conducted.Trial registrationNational Institute of Health (NIH) U.S. National Library of Medicine Clinical Trials.gov (ID: NCT04277312).

The Development of a Multilevel Intervention to Optimise Participant Engagement with an Obesity Prevention Programme Delivered in UK children\u2019s Centres

Poor participant engagement threatens the potential impact and cost-effectiveness of public health programmes preventing meaningful evaluation and wider application. Although barriers and levers to engagement with public health programmes are well documented, there is a lack of proven strategies in the literature addressing these. This paper details the development of a participant engagement intervention aimed at promoting enrolment and attendance to a community-based pre-school obesity prevention programme delivered in UK children’s centres; HENRY (Health, Exercise, Nutrition for the Really Young). The Behaviour Change Wheel framework was used to guide the development of the intervention. The findings of a coinciding focused ethnography study identified barriers and levers to engagement with HENRY that informed which behaviours should be targeted within the intervention to promote engagement. A COM-B behavioural analysis was undertaken to identify whether capability, opportunity or motivation would need to be influenced for the target behaviours to occur. APEASE criteria were used to agree on appropriate intervention functions and behaviour change techniques. A multi-level participant engagement intervention was developed to promote adoption of target behaviours that were proposed to promote engagement with HENRY, e.g. ensuring the programme is accurately portrayed when approaching individuals to attend and providing ‘taster’ sessions prior to each programme. At the local authority level, the intervention aimed to increase buy-in with HENRY to increase the level of resource dedicated to engagement efforts. At the centre level, managers were encouraged to widen promotion of the programme and ensure that staff promoted the programme accurately. HENRY facilitators received training to increase engagement during sessions, and parents that had attended HENRY were encouraged to recruit their peers. This paper describes one of the first attempts to develop a theory-based multi-level participant engagement intervention specifically designed to promote recruitment and retention to a community-based obesity prevention programme. Given the challenges to implementing public health programmes with sufficient reach, the process used to develop the intervention serves as an example of how programmes that are already widely commissioned could be optimised to enable greater impact.

The development of food portion sizes suitable for 4-18-year-old children used in a theoretical meal plan meeting energy and nutrient requirements.

Healthy eating guidelines for school-aged children are available but without advice on portion sizes. This is a concern because consuming large portions is associated with an increased risk of overweight/obesity. The present study aimed to calculate recommended portion sizes for school-aged children based on weight for age and use them to develop a meal plan to meet nutritional needs within energy requirements. Portion size data on foods consumed by school-aged children (4-18years) were extracted from two sources: (i) British National Diet and Nutrition Survey (1997) and (ii) Avon Longitudinal Study of Parents and Children (1997-2006). Foods were allocated to groups based on the UK Eatwell Guide and the US My Plate Model. Portion sizes were developed for a variety of foods. A meal plan that included portion size guidance and met healthy eating guidelines was developed based on the number of portions of each food group needed to meet dietary requirements. Portion sizes were developed for 131 foods that were commonly eaten by children in age groups 4-6, 7-10, 11-14 and 15-18years. The meal plan met requirements for energy and nutrients as specified by UK dietary reference values, except for vitamin D for which there are few dietary sources. Food portion sizes informed by usual intake in UK children can help inform dietary advice for a range of childhood settings and for parents. The meal plan included a wide variety of foods to encourage dietary diversity and meet energy and nutrient needs for school-aged children.

Gestational age at birth and child special educational needs: a UK representative birth cohort study

ObjectiveTo examine the association between gestational age at birth across the entire gestational age spectrum and special educational needs (SENs) in UK children at 11 years of age.MethodsThe Millennium Cohort...

‘Cold bedrooms’ and other cooling facilities in UK children’s hospices, how they are used and why they are offered: A mixed methods study

Background: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children’s hospices have a tradition of using ‘cooling facilities’ (cold bedrooms, cooled blanket/mattress) to extend this period of time by slowing deterioration of the body. Aims: To describe: (1) type and use of cooling facilities in UK children’s hospices, policies and practices regarding their use, and any changes over time. (2) Director of care’s views on the purpose of cooling facilities and the rationale for hospice-specific practices. Methods: An explanatory mixed-methods design consisting two phases: a crosssectional survey of directors of care of UK children’s hospices (n = 52) followed by semi-structured telephone interviews with a sub-sample of respondents. Survey data were analysed using descriptive statistics and interview data using directed content analysis. Results: 41/52 hospices completed the survey and 13 directors of care were interviewed. All hospices had cooling facilities. Some offered use of portable cooling facilities at home, though take-up appears low. Hospices differed in approaches to managing care and duration of use. Views on whether parents should observe deterioration informed the latter. Directors of care believed they provide families with time to say ‘goodbye’ and process their loss. Challenges for staff were reported.

The effect of volunteering upon volunteers’ Christian faith: Food poverty and holiday hunger

Volunteers have been increasingly important in responding to rising UK poverty in the last decade in the context of austerity and the retracting welfare state. Faith-based organisations in particular have played a vital role in this response but whilst there has been attention to how religious faith can motivate people to volunteer, this paper is one of the first geographical pieces to specifically focus on how volunteers’ religious faith is affected by volunteering. Inspired by the geographies of religion, it conceptualises faith as fluid and relational. This means faith cannot only be understood as a motivation at the start of volunteering, and therefore how faith is affected by volunteering needs to be understood. This paper is based on the experiences of volunteers at a participatory research project ‘Lunch’ responding to UK children’s holiday hunger. Engaging with volunteers’ journeys at Lunch drew out two dominant ways in which volunteers’ religious faith was affected: encouragement and challenge from volunteering at a faith-based project without explicit faith content, and secondly, the challenge of giving an unconditional welcome to volunteers and children at Lunch. Overall, I argue that whilst religious faith can motivate people to volunteer, this is not a unidirectional relationship because volunteers’ faith can also be challenged by their experiences which can not only affect their motivations and whether they will persist in volunteering, but can also fundamentally change their understanding of their religious faith.

Integrative molecular characterization of pediatric spinal ependymoma: the UK Children’s Cancer and Leukaemia Group study

BackgroundPediatric spinal ependymomas (SP-EPNs) are rare primary central nervous system tumors with heterogeneous clinical course. Considering that ependymomas in children are biologically distinct from their adult counterparts, this study aimed to define the molecular landscape of SP-EPNs in children.MethodsIn this retrospective study, we have collected tumor samples from 27 SP-EPN patients younger than 18 years and carried out the histological review, DNA methylation, and gene expression profiling.ResultsUnsupervised analyses with methylation profiles revealed 2 subgroups where all grade I tumors (n = 11) were in Group 1, but the grade II/III tumors split into 2 groups (n = 7 in Group 1 and n = 9 in Group 2). The Heidelberg classifier assigned Group 1 tumors as spinal myxopapillary ependymomas (SP-MPEs), 5 Group 2 tumors as SP-EPNs, and failed to classify 4 Group 2 tumors. Copy numbers derived from DNA methylation arrays revealed subgroup-specific genetic alterations and showed that SP-EPN tumors lack MYCN amplification. Gene expression profiling revealed distinct transcriptomic signatures, including overexpression of genes involved in oxidative phosphorylation in SP-MPEs that were validated by Western blot analysis. We discovered widespread decreases in DNA methylation at enhancer regions that are associated with the expression of oncogenic signaling pathways in SP-MPEs. Furthermore, transcription factor motifs for master regulators, including HNF1B, PAX3, and ZIC3, were significantly overrepresented in probes specific to distal regulatory regions in SP-MPEs.ConclusionOur findings show substantial heterogeneity in pediatric SP-EPN and uncover novel enhancers and transcriptional pathways specific to the SP-MPE subgroup, providing a foundation for future therapeutic strategies.

Neurological and Psychiatric Manifestations of COVID-19 in UK Children: A Prospective National Cohort Study

Background: The spectrum of neurological and psychiatric complications associated with COVID-19 is poorly understood in children.Methods: Children and adolescents (Findings: Fifty-two cases were identified, among 1334 children hospitalised with COVID-19 giving an estimated incidence of 3.8 per 100 children. Twenty-seven (52%) had a primary neurological or psychiatric disorder, 25 (48%) had features associated with PIMS-TS. The median (range) age was 9 (1-17) years. Thirty-six (69%) were from Black or Asian backgrounds. In the primary neurology/psychiatry disorder group, diagnoses included seven with status epilepticus, five encephalitis, five Guillain-Barré syndrome, three acute demyelinating syndromes, two chorea, two psychosis, two encephalopathy, one transient ischaemic attack. The PIMS-TS neurology group more often had multiple features, which included encephalopathy (22, 88%), peripheral nervous system involvement (10, 40%), behavioural change (9, 36%), hallucinations (6, 24%). A recognised neuro-immune disorder was more common in the primary neurology than the PIMS-TS neurology group (13/27 [48%] vs 1/25 [0.04%], p=0.0003). More patients in the PIMS-TS neurology group were admitted to intensive care (20/25 [80%] vs 6/27 [22%], p=0.0001) and received immunomodulatory treatment (22/25 [88%] vs 12/27 [44%]), p=0.045). Seventeen (33%) were discharged with disability; one PIMS-TS child with stroke died.Interpretation: This first nation-wide study of the neurological and psychiatric manifestations of COVID-19 in children identified key differences between those with a primary disorder versus those with PIMS-TS. More PIMS-TS children needed intensive care, but outcomes were similar overall. Further studies must investigate underlying mechanisms and longer-term outcomes.Funding Statement: BDM and GB are supported to conduct COVID-19 neuroscience research by the UKRI/MRC (MR/V03605X/1); for additional neurological inflammation research due to viral infection BDM is also supported by grants from the MRC/UKRI (MR/V007181//1), MRC (MR/T028750/1) and Wellcome (ISSF201902/3). SR is also supported by Wellcome to conduct paediatric neuroinfectious research (203919/Z/16/Z). IG is supported by NIHR. TS is supported by the National Institute for Health Research (NIHR) Health Protection Research Unit in Emerging and Zoonotic Infections (Grant Nos. IS-HPU-1112-10117 and NIHR200907), NIHR Global Health Research Group on Brain Infections (No. 17/63/110), the UK Medical Research Council’s Global Effort on COVID-19 Programme (MR/V033441/1), and the European Union's Horizon 2020 research and innovation program ZikaPLAN (Preparedness Latin America Network), grant agreement No. 734584. MG is supported to conduct neuroscience and infection research internationally by MRC Newton Fund (MR/S019960/1), MRC DPFS (MR/R015406/1) and NIHR (153195 17/60/67, 126156 17/63/11 and 200907).Declaration of Interests: None.Ethics Approval Statement: The study was approved by the University of Liverpool Institute of Infection Veterinary and Ecological Sciences Ethics Committee (UoL #7725/2020) and the University of Southampton Faculty of Medicine Ethics Committee (ERGO #56504). The electronic CRF was hosted on ALEA (www.aleaclinical.eu) and managed by the Clinical Information Research Unit.

Investigating the iron and zinc content of a popular meal in the diet of UK children and its contribution to daily micronutrient intake for females aged 11–14 years

Investigating the iron and zinc content of a popular meal in the diet of UK children and its contribution to daily micronutrient intake for females aged 11–14 years

Exploring the Effect of Nice Guidelines on Prescribing for Childhood Atopic Eczema in Primary Care with An Interrupted Time Series

IntroductionAtopic eczema (AE) is a chronic inflammatory skin condition affecting 20-32% of UK children, typically diagnosed and treated in primary care. National Institute of Health and Clinical Excellence (NICE, 2007) guidelines recommend all children presenting with AE in primary care are prescribed emollient; topical corticosteroids (TCS) are co-prescribed if indicated by severity. The proportion of children receiving recommended treatment and NICE guideline impact on prescribing practices is unknown. This study was the first to access population-level UK-wide primary care dermatology data from SystmOne.&#x0D; Objectives and ApproachWe explored treatment patterns for childhood AE documented in primary care data from SystmOne.&#x0D; Secondary analysis of retrospective, longitudinal primary care data for childhood (&lt;12yo) AE-related consultations from 2002 to 2013. Four treatment scenarios were compared: 1) emollient and TCS co-prescribed (NICE-recommended for moderate-high severity presentation), 2) emollient only (NICE-recommended for mild severity presentation), 3) TCS only (not recommended), or 4) no topical treatment prescribed (not recommended). ARIMA used to examine step and trend-change in prescribing following guideline release.&#x0D; ResultsNICE-recommended treatments were more common following guideline release: emollient+TCS increased 8% (95%CI 7.7,8.7%); emollient alone increased 8% (95%CI 7.8,8.8%); TCS alone decreased 5% (95%CI -4.2,-5.1%); and no treatment decreased 11% (95%CI -11.3,-12.3%).&#x0D; Longitudinal analysis indicated increased NICE-recommended prescribing was due to pre-existing trends not significantly altered by the guideline release. By December 2013, ~334 children per month were still not receiving recommended AE treatment (37% of ~900 first-time consultations/month).&#x0D; Conclusion / ImplicationsAdherence to best practice guidelines for treatment and management of childhood atopic eczema is currently sub-optimal. Significant barriers to optimal use of this data could be achieved by improving design of data input interfaces with secondary use for research in mind. As well as study findings, this presentation will share challenges associated with utilising routinely collected SystmOne data for research purposes for the first time in the UK.

Morbidities After Cardiac Surgery: Impact on Children’s Quality of Life and Parents’ Mental Health

BackgroundMost children now survive cardiac surgery, and the focus of quality improvement initiatives has shifted toward more complex outcome measures. The aim of this investigation was to study the impact of early postoperative morbidities on parent-reported patient quality of life and parental anxiety or depression over 6 months.MethodsThis prospective case-matched cohort study was conducted in 5 UK children’s cardiac centers. Measures of impact for patient categories of “single morbidity,” “multiple morbidities,” and “extracorporeal life support (ECLS)” were compared with “no morbidity.” The measures used were the Pediatric Quality of Life Inventory (PedsQL) and the 4-item Patient Health Questionnaire (PHQ-4) at 6 weeks and 6 months postoperatively. The study modeled the outcomes using mixed effects regression, adjusting for case mix and clustering within centers.ResultsThe study included 666 patients who underwent operation at a median age of 81 days (interquartile range, 10 to 325 days). At 6-week follow-up, significant adjusted differences to the reference group with no morbidity were found for total PedsQL scores, which were lower in patients with ECLS (P = .01), multiple morbidities (P < .001), and a single morbidity (P = .04), as well as the proportion of parents with anxiety and depression, which were higher in the group with multiple morbidities (P = .04 and P = .01, respectively). At 6 months, measures had improved in all morbidity groups. The only significant adjusted difference in the reference group was for physical PedsQL scores in ECLS (P = .04) and multiple morbidities (P < .01).ConclusionsPatient and parent well-being are strongly influenced by postoperative morbidities early after surgery, with improvement by 6 months. Family psychological support and holistic rehabilitation are vital for children who experience postoperative morbidities.

Associations with kidney transplant survival and eGFR decline in children and young adults in the United Kingdom: a retrospective cohort study

BackgroundAlthough young adulthood is associated with transplant loss, many studies do not examine eGFR decline. We aimed to establish clinical risk factors to identify where early intervention might prevent subsequent adverse transplant outcomes.MethodsRetrospective cohort study using UK Renal Registry and UK Transplant Registry data, including patients aged < 30 years transplanted 1998–2014. Associations with death-censored graft failure were investigated with multivariable Cox proportional hazards. Multivariable linear regression was used to establish associations with eGFR slope gradients calculated over the last 5 years of observation per individual.ResultsThe cohort (n = 5121, of whom n = 371 received another transplant) was 61% male, 80% White and 36% had structural disease. Live donation occurred in 48%. There were 1371 graft failures and 145 deaths with a functioning graft over a 39,541-year risk period. Median follow-up was 7 years. Fifteen-year graft survival was 60.2% (95% CI 58.1, 62.3).Risk associations observed in both graft loss and eGFR decline analyses included female sex, glomerular diseases, Black ethnicity and young adulthood (15–19-year and 20–24-year age groups, compared to 25–29 years). A higher initial eGFR was associated with less risk of graft loss but faster eGFR decline. For each additional 10 mL/min/1.73m2 initial eGFR, the hazard ratio for graft loss was 0.82 (95% CI 0.79, 0.86), p < 0.0001. However, compared to < 60 mL/min/1.73m2, higher initial eGFR was associated with faster eGFR decline (> 90 mL/min/1.73m2; − 3.55 mL/min/1.73m2/year (95% CI -4.37, − 2.72), p < 0.0001).ConclusionsIn conclusion, young adulthood is a key risk factor for transplant loss and eGFR decline for UK children and young adults. This study has an extended follow-up period and confirms common risk associations for graft loss and eGFR decline, including female sex, Black ethnicity and glomerular diseases. A higher initial eGFR was associated with less risk of graft loss but faster rate of eGFR decline. Identification of children at risk of faster rate of eGFR decline may enable early intervention to prolong graft survival.

Sculpting Culture: Early Maternal Responsiveness and Child Emotion Regulation – A UK-Italy Comparison

Mother-infant interactions, including culturally specific features, have been found to predict child socio-emotional development (e.g., social communication and emotion regulation (ER)). However, research is lacking on the specific processes involved. We used a cross-cultural, longitudinal design, and a microanalytic coding approach to address this issue. Fifty-two mother-infant dyads were recruited from the UK ( N = 21) and Italy ( N = 31), representing Northern European and Mediterranean cultures, respectively. While these cultures share core features of parent-child relationships, their values about emotional expressiveness differ. We observed face-to-face mother-infant interactions at 2 months (T1), and coded infant socio-emotional behavior and maternal responses. Children were seen again at 2 years (T2), when their ER in the face of frustration, using the Barrier Task, was assessed, and the occurrence of different “mature” strategies (communicative and autonomous) coded. Results revealed common features of interactions at T1 (infant socio-emotional expressions, and maternal positive responses), but also cultural variation in the frequency of different infant cues (more pre-speech in UK infants, more smiles in Italians), and of maternal responses to them. While greater overall maternal responsiveness at T1 predicted more mature ER in general at T2, cultural differences in early responsiveness to specific infant behaviors predicted later group differences in children’s use of particular ER strategies, with UK children using more communicative strategies, and Italians more autonomous. Findings indicate that positive maternal behaviors that are common across cultures (e.g., responsiveness) promote overall successful child emotion regulation, while culturally specific features of interactions are associated with how child socio-emotional outcomes are expressed.

Digital by Default: Children’s Capacity to Understand and Manage Online Data and Privacy

How do children understand the privacy implications of the contemporary digital environment? This question is pressing as technologies transform children’s lives into data which is recorded, tracked, aggregated, analysed and monetized. This article takes a child-centred, qualitative approach to charting the nature and limits of children’s understanding of privacy in digital contexts. We conducted focus group interviews with 169 UK children aged 11–16 to explore their understanding of privacy in three distinct digital contexts—interpersonal, institutional and commercial. We find, first, that children primarily conceptualize privacy in relation to interpersonal contexts, conceiving of personal information as something they have agency and control over as regards deciding when and with whom to share it, even if they do not always exercise such control. This leads them to some misapprehensions about how personal data is collected, inferred and used by organizations, be these public institutions such as their schools or commercial businesses. Children’s expectation of agency in interpersonal contexts, and their tendency to trust familiar institutions such as their schools, make for a doubly problematic orientation towards data and privacy online in commercial contexts, leading to a mix of frustration, misapprehension and risk. We argue that, since the complexity of the digital environment challenges teachers’ capacity to address children’s knowledge gaps, businesses, educators, parents and the state must exercise a shared responsibility to create a legible, transparent and privacy-respecting digital environment in which children can exercise genuine choice and agency.