Archives of Disease in Childhood最新文献

{"title":"'Letting him know that we love him': the experiences of young people who question their gender and the parents who support them.","authors":"Christine Jackson-Taylor, Karl Atkin","doi":"10.1136/archdischild-2024-328025","DOIUrl":"https://doi.org/10.1136/archdischild-2024-328025","url":null,"abstract":"<p><strong>Background: </strong>Gender identity services for children and young people are currently being reorganised in England and Wales. Provision is required to negotiate clinical uncertainty and a public debate that cannot agree on what care should look like.</p><p><strong>Objectives: </strong>To explore how young people, parents and young adults respond to gender dysphoria, distress or discomfort; and to understand how they negotiate referral, assessment and possible interventions.</p><p><strong>Design: </strong>Qualitative study, using narrative interviews with young people, aged between 12 and 18 years old (n=14), referred to a gender identity service; their parents (n=12); and young adults, aged between 19 and 30 years old (n=18), who sought gender affirming care. The study took place between March 2022 and December 2023.</p><p><strong>Results: </strong>Young people in our study describe supportive relationships with parents, but regard them as too cautious when discussing medical pathways. Young people enter specialist care with a sense of urgency. They are disappointed when realising that access to medical pathways does not occur immediately. They do, however, come to appreciate talking about their experiences. Parents face considerable anxieties and, like young people, value the support they receive from specialist clinicians.</p><p><strong>Conclusions: </strong>Young people who question their gender require access to safe and effective treatments, alongside respectful therapeutic support. Young people and their parents emphasise the importance of an open-minded approach, where they are given space to explore and understand their experiences, before making decisions about the future. The young adults we spoke to confirmed the importance of this.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143036180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"COVID-19 vaccine effectiveness and uptake in a national cohort of English children and young people with life-limiting neurodisability.","authors":"Joana Cruz, Rachel Harwood, Simon Kenny, Matthew Clark, Peter J Davis, Elizabeth S Draper, Dougal Hargreaves, Shamez N Ladhani, Karen Luyt, Stephen W Turner, Elizabeth Whittaker, Pia Hardelid, Lorna K Fraser, Russell M Viner, Joseph Lloyd Ward","doi":"10.1136/archdischild-2024-327293","DOIUrl":"10.1136/archdischild-2024-327293","url":null,"abstract":"<p><strong>Objective: </strong>To investigate SARS-CoV-2 vaccine uptake and effectiveness in children and young people (CYP) with life-limiting neurodisability.</p><p><strong>Design: </strong>We undertook a retrospective cohort study using national hospital data in England from 21 December 2020 to 2 September 2022 to describe SARS-CoV-2 vaccination uptake, and then examined COVID-19 hospitalisation, paediatric intensive care unit (PICU) admission and death following SARS-CoV-2 infection by vaccination status using Cox regression models.</p><p><strong>Patients: </strong>CYP aged 5-17 with life-limiting neurodisability.</p><p><strong>Results: </strong>We identified 38 067 CYP with life-limiting neurodisability; 13 311 (35.0%) received at least one SARS-CoV-2 vaccine, with uptake higher among older, white CYP, from less deprived neighbourhoods. Of 8134 CYP followed up after a positive SARS-CoV-2 test, 1547 (19%) were vaccinated. Within 28 days of infection, 309 (4.7%) unvaccinated CYP were hospitalised with COVID-19 compared with 75 (4.8%) vaccinated CYP. 46 (0.7%) unvaccinated CYP were admitted to PICU compared with 10 (0.6%) vaccinated CYP. 20 CYP died within 28 days of SARS-CoV-2 infection, of which 13 were unvaccinated. Overall, adjusted hazard of hospitalisation for COVID-19 or admission to PICU did not vary by vaccination status. When the Alpha-Delta SARS-CoV-2 variants were dominant, hazard of hospitalisation with COVID-19 was significantly lower among vaccinated CYP (HR 0.26 (0.09 to 0.74)), with no difference seen during Omicron (HR 1.16 (0.74 to 1.81)).</p><p><strong>Conclusions: </strong>SARS-CoV-2 vaccination was protective of COVID-19 hospitalisation among CYP with life-limiting neurodisability during Alpha-Delta, but not for other SARS-CoV-2 variants. Vaccine uptake was low and varied by ethnicity and deprivation.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"158-164"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142456697","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comparison of clinical presentation and management of children and adolescents with ARFID between paediatrics and child and adolescent psychiatry: a prospective surveillance study.","authors":"Ellaha Haidar, Javier Sanchez-Cerezo, Josephine Neale, Nikita Julius, Richard M Lynn, Lee D Hudson, Dasha Nicholls","doi":"10.1136/archdischild-2024-327032","DOIUrl":"10.1136/archdischild-2024-327032","url":null,"abstract":"<p><strong>Objective: </strong>To compare the clinical presentations, management and outcomes of avoidant/restrictive food intake disorder (ARFID) across paediatric and child and adolescent (C&A) psychiatric settings.</p><p><strong>Study design: </strong>Prospective surveillance study.</p><p><strong>Methods: </strong>Data were collected during a 13-month prospective surveillance study of children and adolescents with ARFID in the UK and Republic of Ireland. Paediatricians reported cases via the British Paediatric Surveillance Unit and psychiatrists through the Child and Adolescent Psychiatry Surveillance System. A follow-up questionnaire was sent at 12 months after a case of ARFID was reported.</p><p><strong>Results: </strong>319 cases were included, 189 from paediatricians and 130 from C&A psychiatrists. Patients presenting to paediatricians were younger (9.8 years vs 13.7 years), more often male (62.4% vs 43.1%), and had more chronic symptoms (80.4% vs 67.0%), selective eating (63.7% vs 46.6%) and comorbid autism (67.6% vs 50.0%) than to psychiatrists. Psychiatrists saw patients with more fear of aversive consequences from eating (13.1% vs 3.2%), weight loss (76.7% vs 65.0%) and comorbid anxiety (78.2% vs 47.4%). Patients presenting to paediatricians more often received medical monitoring (74.6% vs 53.1%), dietetic advice (83.1% vs 70.0%) and nutritional supplements (49.2% vs 30.0%). At follow-up, both cohorts improved in nutritional status. However, the psychiatric cohort improved more regarding disordered eating behaviours.</p><p><strong>Conclusions: </strong>The presentation and management of ARFID differs across clinical settings. Findings suggest the need to develop clinical pathways for ARFID assessment and management across paediatrics and mental health. Our findings highlight the potential benefits of psychiatric input for some patients with ARFID.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"144-150"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142456696","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Collecting paediatric critical care transport data: key to understanding how times are changing.","authors":"Peter J Davis","doi":"10.1136/archdischild-2024-327873","DOIUrl":"10.1136/archdischild-2024-327873","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"85-86"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142692346","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Managing menstruation for medically complex paediatric patients.","authors":"Susan H Gray","doi":"10.1136/archdischild-2024-326968","DOIUrl":"10.1136/archdischild-2024-326968","url":null,"abstract":"<p><p>Physicians who care for children and adolescents need evidence-based information about how to manage menses for medically complicated patients. The use of many hormonal medications for menstrual management is considered 'off-label' because many of these medications have indications only for contraception. A growing body of evidence supports the use of particular medications or strategies for a wide variety of medical conditions, but this information has been slow to reach all paediatric patients, perhaps in part because of the off-label nature of prescribing. Specialists skilled in hormone management are in short supply and often not immediately available for consultation, and they may also be inexperienced prescribing for medically complex paediatric patients. Misconceptions about the necessity of menstruation or concerns regarding use of contraceptives in young patients may also limit the use of medically indicated off-label hormonal regimens. This review will outline current patient-centred strategies to inform physicians' choices about when and how to intervene medically to improve quality of life for medically complex girls with problematic periods-whether by making periods more predictable, preventing ovulation, reducing pain or eliminating menses altogether.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"94-101"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141174635","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Systematic review of interventions to reduce hospital and emergency department stay in paediatric populations.","authors":"Smita Dick, Clare MacRae, Laura Colacino, Philip Wilson, Stephen W Turner","doi":"10.1136/archdischild-2024-327155","DOIUrl":"10.1136/archdischild-2024-327155","url":null,"abstract":"<p><strong>Introduction: </strong>This systemic review describes interventions designed to shorten length of stay (LOS) in hospital or the emergency department (ED).</p><p><strong>Methods: </strong>Papers published from 2000 until February 2024 were sought in MEDLINE, EMBASE, PsycINFO, SCIE, Cochrane Library Database and DARE databases. Outcomes were LOS, readmissions and healthcare cost.</p><p><strong>Results: </strong>Eighteen studies were eligible, including 10 randomised controlled trials and 8 non-randomised studies. Children were recruited from ED in seven studies and from the paediatric ward in 11 studies. Nine studies delivered outpatient parenteral antibiotic therapy (OPAT) to children and were associated with reduced LOS and cost but longer duration of antibiotic treatment. Seven studies described 'hospital at home' in children admitted with a range of conditions and some reported reduced readmissions and LOS in addition to reduced costs, compared with standard hospital care. Two studies provided care in a step-down facility and reported reduced readmissions and costs.</p><p><strong>Conclusions: </strong>Many of the interventions identified were cost-effective but often led to a longer total period of care compared with inpatient care. Providing care outside of hospital is not associated with increased adverse outcomes compared with receiving care in hospital and brings benefit to the child's family.</p><p><strong>Prospero registration number: </strong>CRD42023408663.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"120-126"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142493539","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Paediatric family activation rapid response (FARR) in acute care: a qualitative study for developing a multilingual application (app) intervention.","authors":"Takawira C Marufu, Nicola Taylor, Shannon Cresham Fox, Emma Popejoy, Rachel Boardman, Joseph C Manning","doi":"10.1136/archdischild-2024-327436","DOIUrl":"10.1136/archdischild-2024-327436","url":null,"abstract":"<p><strong>Background: </strong>Delayed recognition of clinical deterioration can result in harm to patients. Parents/carers can often recognise changes in the child's condition before healthcare professionals (HCPs). To mitigate the risk of failure to rescue and promote early intervention, family-activated rapid response (FARR) systems are part of family-integrated care. Mechanisms for parents/carers to escalate concerns regarding their child's clinical status remain limited to direct verbal communication, which may impede those with communication/linguistic challenges.</p><p><strong>Aim: </strong>To develop a digital multilingual intervention by which families/carers can escalate their concerns directly to the rapid response team while in acute paediatric care.</p><p><strong>Methods: </strong>A single-centre qualitative, co-design app development study was conducted. Evidence synthesis from a systematic review of the international literature informed interviews on intervention prototype development using co-design focus groups. Participant recruitment targeted underserved communities for multilingual functionality validity. Data were analysed using qualitative content analysis.</p><p><strong>Results: </strong>Thirty parents/carers (n=16) and HCPs (n=14) participated in the study. Three themes were generated from the data analysis: (1) relational considerations; communication, professional and parental attributes, and collaborative working; (2) technology considerations; app content, usage and outcomes; and (3) individual and environmental considerations; parental and professional elements, and workload. A FARR app prototype was developed based on the data.</p><p><strong>Conclusion: </strong>The prototype app provides a platform to develop a coordinated and consistent technological approach to paediatric FARR that acknowledges cultural nuances and preferences, ensuring that parents can communicate in a manner that aligns with their cultural background and communication abilities, thereby enhancing the quality of care delivered.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"137-143"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142405962","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Design and evaluation of a visual genomic explainer: a mixed-methods study.","authors":"Grainne Butler, Camilla Andersen, Jim Buttery, Asheeta Gupta, Melissa M Martyn, Zornitza Stark, Ella Wilkins, Kushani Jayasinghe, Catherine Quinlan","doi":"10.1136/archdischild-2024-327650","DOIUrl":"10.1136/archdischild-2024-327650","url":null,"abstract":"<p><strong>Objective: </strong>To design and assess a visual genomic explainer focusing on plain language and engaging imagery. The explainer aimed to support doctors' comprehension of complex genomic concepts and results and act as a resource promoting the integration of genomic testing into mainstream care.</p><p><strong>Design: </strong>Prospective genomic resource development and questionnaire.</p><p><strong>Setting: </strong>Regional and tertiary hospitals in Australia and Ireland, private and community-based clinicians in Australia.</p><p><strong>Participants: </strong>Recruitment of paediatricians and nephrologists in Australia and paediatricians in Ireland was multi-faceted. Emails with survey links were circulated through training bodies, advanced trainee networks, departmental heads, and professional societies.</p><p><strong>Main outcome measures: </strong>Comprehension, engagement and perception of the visual explainer.</p><p><strong>Results: </strong>Most clinicians surveyed (95% (53) Australian group, 100% (29) Irish group) felt that genomics would be a useful tool in their practice. 77% of Australian paediatric respondents and 73% of Irish paediatric respondents felt that genomics was underutilised. Challenges encountered with genomic testing included poor patient comprehension of the testing process and results along with difficulties perceived by clinicians in explaining complex results. 89% of Australian paediatricians and 100% of Irish paediatricians surveyed would recommend the use of the explainer to other professionals in their field.</p><p><strong>Conclusion: </strong>This genomic resource was acceptable to clinicians and could be a useful tool to support paediatricians integrating genomic testing into mainstream care.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"151-157"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142493538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transport of critically ill children to paediatric intensive care units in the UK and Ireland: 2013-2022.","authors":"Padmanabhan Ramnarayan, Dora Wood, Elizabeth Draper, Lyn Palmer, Richard Feltbower, Hannah L Buckley, Michael J Griksaitis, Daniel Henry Lutman, Constantinos Kanaris, Deirdre O'Shea, Sarah E Seaton","doi":"10.1136/archdischild-2024-327088","DOIUrl":"10.1136/archdischild-2024-327088","url":null,"abstract":"<p><strong>Objective: </strong>To explore the trends and changes in the transport of children to paediatric intensive care units (PICUs) between 2013 and 2022.</p><p><strong>Design: </strong>Retrospective analysis of routinely collected data.</p><p><strong>Patients: </strong>Children transported for care in a PICU in the UK and Ireland aged<16 years.</p><p><strong>Interventions: </strong>None.</p><p><strong>Measurements and main results: </strong>There were 43 058 transports to a PICU involving 36 438 children from 2013 to 2022 with the majority of children requiring only one transport. The number of transports increased from 4131 (2013) to 4792 (2022). Over the study period the percentage of children aged under 1 year who were transported decreased from 50.2% to 45.2% and similarly, the percentage who were invasively ventilated also decreased from 81.1% to 70.2%. Conversely, the use of non-invasive ventilation during transports increased slightly from 4.0% to 7.0%. The percentage of transports where a parent was able to accompany the child increased over time (2013: 66.2% to 2019: 74.9%), although there were reductions due to the COVID-19 pandemic and requirements for social distancing (2020: 52.4%).</p><p><strong>Conclusions: </strong>We have demonstrated an increased use of specialist paediatric transport services and changes in the PICU population over time. Routine data collection from the transport services provide a means to measure improvements and changes over time in the service provided to critically ill children and young people who need transport to the PICU.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"127-132"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142103772","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Should next-generation sequencing be considered as a first-line genetic investigation for children with early developmental impairment?","authors":"Frederica Sarantis, Aisosa Osas Guobadia, Marwa A Bebars, Rachana Varma, Jonathon A A Holland, Thiloka Ratnaike","doi":"10.1136/archdischild-2024-327752","DOIUrl":"10.1136/archdischild-2024-327752","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"170-173"},"PeriodicalIF":4.3,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142543318","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}