Archives of Disease in Childhood最新文献

Objective: Parents and caregivers of children with neurological conditions express interest in new and developing treatments and trials; however, they have limited knowledge of, and access to, reliable information. This study aims to empower and equip decision-making and support communication in the application of advanced neurotherapeutics and personalised medicine, covering gene therapy, stem cell therapy, neurostimulation and neuroimmunotherapies.

Design: A suite of online psychoeducational resources has been created and evaluated to establish implementation success. A codesign approach was incorporated in this mixed methods cross-sectional study.

Setting: Quaternary children's hospital network.

Patients: Across three phases, 105 parents of children with neurological conditions, clinicians and advocacy group representatives participated.

Interventions: A suite of psychoeducational resources about advanced therapeutics in clinical trials was codeveloped with parents and evaluated.

Main outcome measures: Acceptability, Appropriateness, and Feasibility of Intervention Measures, Preparedness for Decision-Making Scale, Decision Self-efficacy Scale and open-ended qualitative feedback.

Results: The resources provide an acceptable, appropriate, credible and feasible source of information. Parents also established they help with preparedness and confidence in decision-making regarding the applications of neurotherapeutics.

Conclusions: This study and its results are aligned with, and supports, the needs and preferences of caregivers of children with neurological conditions, promoting information provision, healthcare engagement and clinical decision-making. These resources will form a foundation for accurate and contemporary scientific knowledge that is distilled and available to a wide range of stakeholders.

Background: Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best to engage parents. The aim of this study was to use experience-based co-design to create a toolkit to support parental involvement in CDR.

Methods: A survey of English paediatric intensive care units (PICUs) and palliative care services explored practices and identified a diverse sample of sites for professional interviews. Bereaved parents were recruited through charities, hospitals and social media. Semistructured interviews were held with parents and professionals followed by co-design workshops to develop the toolkit.

Results: There were 29 survey responses, 13 out of 21 from PICUs and 16 out of 34 from palliative care.21 multidisciplinary healthcare professionals were interviewed.23 bereaved parents of children who died aged 0-18 years in 2021-2022, either during hospital admission or under palliative care were, interviewed.10 parents and 23 professionals participated in co-design meetings. Key emotional touchpoints identified from parents' experiences were: becoming aware of CDR meetings, being asked for input, knowing the date and receiving feedback. All agreed on the importance of involving parents, with clear communication, and need for resources and training for key workers.The toolkit includes training videos, a standardised pathway including template letters, feedback form, easy-read leaflet and an animation explaining the importance of involving parents.

Conclusions: Co-design has successfully supported the development of a toolkit of resources in a sensitive area. It required considerable support from bereavement support organisations and researchers. Future evaluation is required.

Trial registration number: ISRCTN14790455.

Objective: The objective is to explore the experiences of children and young people (CYP) with cancer, their parents, and healthcare professionals (HCPs) involved in their care of oral mucositis.

Design: A qualitative study was conducted. CYP with experience of mucositis were purposively sampled, aiming for diversity in age, sex and cancer diagnosis. HCPs were purposively sampled aiming for diversity in professional role and years of experience. Semi-structured interviews with CYP and their parents and focus groups with HCPs were conducted. Interviews were audio recorded and professionally transcribed. Anonymised transcripts underwent reflexive thematic analysis using an inductive essentialist approach. Codes were discussed and constant comparisons made to increase validity. Recruitment occurred alongside analysis until no new codes were identified.

Results: 27 participants were interviewed (8 CYP, 10 parents, 9 HCPs). CYP had diverse cancer diagnoses and were aged between 8 and 15 years. HCPs had diverse professional roles across medicine, dentistry, nursing, dental nursing, and play therapy with a mean of 7.4 years of experience in their individual role. Four themes were generated: (1) mucositis as a multifaceted, negative emotive experience, (2) being taken away from 'normality', (3) complex biopsychosocial impact on eating and (4) management of mucositis presents additional strain. Within these themes, multiple subthemes were generated and cross-cutting challenges in maintaining oral health were identified.

Conclusion: Oral mucositis presents a significant challenge to CYP, families and HCPs during cancer treatment functionally, psychologically and socially, with an adverse impact on treatment experiences. Prevention of oral mucositis is a priority to these groups within supportive cancer care.

Objective: The objective is to determine the incidence of sudden unexplained death in childhood (SUDC) for children aged 1-14 years in England and Wales during 2001-2020.

Design: Observational study using official national statistics on death registrations and child population.

Setting: England and Wales.

Patients: Children dying of SUDC, aged 1-14 years, registered as International Classification of Disease version 10 codes R95-99.

Main outcome measures: Incidence of SUDC, proportion of child mortality due to SUDC.

Results: A total of 582 children aged 1-14 years died of SUDC, 450 (77.3%) deaths were in children aged 1-4 years, 55 (9.5%) in those aged 5-9 years and 77 (13.2%) in those aged 10-14 years. The number of SUDC was relatively stable with a mean of 29 cases per year (range 21-38, SD 4.2). Overall child mortality fell from 1482 deaths in 2001 to 826 in 2020. The incidence of SUDC for children aged 1-14 years ranged between 0.002 and 0.004 per 1000. The relative proportion of child mortality due to SUDC increased from 1.96% of all child deaths in 2001 to 3.03% in 2020 (p=0.103), SUDC accounted for 5.8% of deaths of children aged 1-4 years by 2020. At all ages, SUDC was more common in male children than female children.

Conclusion: The incidence of SUDC has remained static despite overall child mortality almost halving in the last two decades. SUDC is now more widely recognised due to improved investigation, but there has been limited research into SUDC; potential causes and associated risk factors remain unknown. As the relative proportion of child deaths due to SUDC increases, child health professionals must be aware of SUDC to support bereaved families.

Objective: To determine the efficacy of addition of melatonin or triclofos to sleep deprivation as compared with sleep deprivation with placebo for conduct of successful sleep electroencephalogram (EEG) among children between 6 months and 12 years of age.

Design, setting and patients: 486 children aged between 6 months and 12 years who were uncooperative or referred for sleep EEG were enrolled for this double-blind, placebo-controlled randomised trial between 30 June 2022 and 31 March 2023.

Intervention: On the day of sleep EEG, participants were sleep deprived by 25% of their regular sleep duration and then randomly assigned to receive either triclofos (50 mg/kg), melatonin (weight ≤15 kg=3 mg; weight >15 kg=6 mg) or placebo.

Outcome: Primary outcome was the conduct of a successful sleep EEG.

Results: 486 children were randomly assigned to intervention with triclofos (n=165), melatonin (n=161) or placebo (n=160). Sleep EEG success (p<0.001) with different interventions was: triclofos=145/165(88%); melatonin=123/161 (76%) and placebo=65/160 (41%). Sleep EEG's success rate was better with triclofos than melatonin (OR=2.2; 95% CI 1.2 to 4.1) or placebo (OR=10.6; 95% CI 6.1 to 19.0). Melatonin was better than placebo in the rate of successful sleep EEG (OR=4.7; 95% CI 2.9 to 7.7). Beta artefacts were significantly more with triclofos (51/145) than melatonin (19/123) and placebo (12/65), but the readability of EEG was not impacted. Movement/unwanted arousal artefacts were significantly more with placebo (37/65) than with triclofos (37/145) and melatonin (34/123). Drug-related adverse events were comparable between triclofos and melatonin. Neither of the drugs was associated with any serious adverse events.

Conclusions: Both triclofos and melatonin are individually better than sleep deprivation alone for conducting successful sleep EEGs. Triclofos is significantly better than melatonin for conducting sleep EEGs, with no significant increase in adverse events.

Trial registration number: CTRI/2022/05/042479; Clinical Trials Registry of India.