Archives of Disease in Childhood最新文献

{"title":"Codesign and evaluation of advanced therapeutic information resources for and with families of children with neurological conditions: a mixed methods cross-sectional study.","authors":"Christian Elias Meagher, Didu S Kariyawasam, Kristine A Elias Concepcion, Russell Dale, Kate Hetherington, Shekeeb Mohammad, Elizabeth Emma Palmer, Susan Woolfenden, Michelle Anne Farrar","doi":"10.1136/archdischild-2024-327914","DOIUrl":"10.1136/archdischild-2024-327914","url":null,"abstract":"<p><strong>Objective: </strong>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.</p><p><strong>Design: </strong>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.</p><p><strong>Setting: </strong>Quaternary children's hospital network.</p><p><strong>Patients: </strong>Across three phases, 105 parents of children with neurological conditions, clinicians and advocacy group representatives participated.</p><p><strong>Interventions: </strong>A suite of psychoeducational resources about advanced therapeutics in clinical trials was codeveloped with parents and evaluated.</p><p><strong>Main outcome measures: </strong>Acceptability, Appropriateness, and Feasibility of Intervention Measures, Preparedness for Decision-Making Scale, Decision Self-efficacy Scale and open-ended qualitative feedback.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142613844","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":"Summary of recent advances in management of torus fracture of the distal radius in children.","authors":"Maysoon Hussain, Dan Perry, Shrouk Messahel","doi":"10.1136/archdischild-2024-326880","DOIUrl":"10.1136/archdischild-2024-326880","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"994-996"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139970816","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":"Diagnosis journey for children with juvenile idiopathic arthritis: a qualitative study.","authors":"Aurelie Chausset, Caroline Freychet, Anne Lohse, Alexandre Belot, Etienne Merlin, Stephane Echaubard, Anne-Marie Schott, Jonathan Lachal","doi":"10.1136/archdischild-2024-327426","DOIUrl":"10.1136/archdischild-2024-327426","url":null,"abstract":"<p><strong>Objective: </strong>The objective is to explore the journey to diagnosis and referral pathway from the onset of symptoms to the initial assessments at paediatric rheumatology (PR) centres, based on the experience of children with juvenile idiopathic arthritis (JIA) and their parents.</p><p><strong>Design: </strong>We conducted a qualitative study with semistructured interviews. Our qualitative and phenomenological procedure applied interpretative phenomenological analysis.</p><p><strong>Participants: </strong>19 families of children diagnosed with JIA 4-24 months before the study began (22 parents, 12 children>11 years), across 4 PR centres.</p><p><strong>Main outcome measures: </strong>The results highlight the contrasting feelings of children and their parents on the referral pathway and interactions with primary care physicians (PCPs).</p><p><strong>Results: </strong>Four superordinate themes emerged: (1) the journey undertaken by families from initially trivialising the first symptoms to a growing sense of urgency, (2) the perception gap between the families' growing disquiet and first medical interventions, (3) the lack of guidance from physicians prompting parents to initiate action and (4) the various elements of the care pathway that influenced the way the diagnosis was experienced and its impact.</p><p><strong>Conclusion: </strong>The psychosocial consequences of delayed diagnosis in JIA should not be underestimated, especially for adolescents. The views and experiences of children and their parents on the diagnostic journey should be implemented in training programmes and guidelines for PCPs. The development of online supports, integrating the latest medical knowledge with testimonials from families about their experiences, with a common language for physicians and the general population, can facilitate communication and empower families to navigate the healthcare system.</p><p><strong>Trial registration number: </strong>NCT05696340.Cite Now.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"1003-1009"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142035058","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":"Natural history of spinal cord compression stage AFMS3 in infants with achondroplasia: retrospective cohort study.","authors":"Moira Shang-Mei Cheung, Alessandra Cocca, Charlotte H Harvey, Connor Stephen S Brett, Amaka C Offiah, Stephanie Borg, Nathan Jenko, Felice D'Arco, Dominic Thompson","doi":"10.1136/archdischild-2024-327035","DOIUrl":"10.1136/archdischild-2024-327035","url":null,"abstract":"<p><strong>Background and objective: </strong>Foramen magnum stenosis (FMS) is a common, serious complication of achondroplasia in infancy and associated with sudden infant death. The Achondroplasia Foramen Magnum Score (AFMS; 0-4) is used to classify the severity of stenosis to inform appropriate neurosurgical management. Infants with AFMS4 are referred for neurosurgery, while well children with AFMS3 undergo repeat MRI routinely after 12 months.As the natural history of children with AFMS3 is currently unclear, the objective was to review follow-up MRI scans of infants initially classified as AFMS3 to define more clearly the evolution of this degree of stenosis.</p><p><strong>Design: </strong>This retrospective cohort study, from two tertiary centres, included infants with a confirmed diagnosis of achondroplasia and AFMS3 on initial MRI who subsequently underwent repeat MRI or proceeded straight to neurosurgery.</p><p><strong>Results: </strong>Twenty-two cases satisfied the inclusion criteria. Mean age in months was 6.23 (SD±3.82) and 17.95 (SD±7.68) at baseline and follow-up scans, respectively. Follow-up MRI showed no change in 23% (N=5), improvement in 36% (N=8) to either AFMS1 (N=5) or AFMS2 (N=3). There was progression in 41% to AFMS4 (N=8). One case had neurosurgey without follow-up MRI (N=1).</p><p><strong>Conclusions: </strong>These results support MRI screening for FMS in infants with achondroplasia. Furthermore, infants with AFMS3 should undergo follow-up MRI as over 40% progress prompting neurosurgical intervention. There is currently no consensus on frequency or timing of screening for AFMS3 in achondroplasia; however, we suggest that guidance for follow-up imaging is modified to 6 months to detect progression earlier in this at-risk cohort.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"1025-1028"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142035060","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":"Correlations between ambient air pollution and the prevalence of hospitalisations and emergency room visits for respiratory diseases in children: a systematic review.","authors":"Aline Priscila de Souza, Carla Cristina Souza Gomez, Maria Angela Gonçalves de Oliveira Ribeiro, Paula Dornhofer Paro Costa, José Dirceu Ribeiro","doi":"10.1136/archdischild-2023-326214","DOIUrl":"10.1136/archdischild-2023-326214","url":null,"abstract":"<p><strong>Objective: </strong>It is known that exposure to air pollution is associated with an increased risk for cardiovascular and respiratory diseases. This review aimed to summarise observational studies on the impact of short and long-term exposure to ambient air pollution on prevalence of hospitalisations and/or emergency department visits caused by respiratory diseases in children and adolescents.</p><p><strong>Sources: </strong>Pubmed, Scopus, Embase and Cochrane Library databases were searched for the years 2018 to December 2022, including studies in any language.</p><p><strong>Summary of the findings: </strong>A total of 15 studies published between 2018 and 15 January 2022 were included in this review. PM_2.5 was the most type of particulate matter studied. Short-term exposure to PM_2,5, PM₁₀, NO₂, SO₂ and O₃, even at concentrations less than the current health-based guidelines, was significantly correlated with increased risk of outpatient/hospital visits and hospitalisations for respiratory diseases by children.</p><p><strong>Conclusions: </strong>Our findings emphasise the importance and urgency of long-term control of air pollution and pollution-related diseases, especially among children and adolescents. There is a need for further research employing more homogeneous methodologies for assessing exposure and outcome measurements, in order to enable systematic reviews with meta-analysis.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"980-987"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141174628","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":"Language ability and virtual mental healthcare utilisation among immigrant and refugee youth: a population-based cohort study.","authors":"Hodan Mohamud, Alene Toulany, Sonia M Grandi, Azmina Altaf, Longdi Fu, Rachel Strauss, Natasha Ruth Saunders","doi":"10.1136/archdischild-2023-326507","DOIUrl":"10.1136/archdischild-2023-326507","url":null,"abstract":"<p><strong>Background and objectives: </strong>The widespread adoption of virtual care during the pandemic may not have been uniform across populations, including among paediatric immigrants and refugees. We sought to examine the association between virtual mental healthcare utilisation and immigration factors.</p><p><strong>Methods: </strong>This population-based cohort study of immigrants and refugees (3-17 years) used linked health administrative databases in Ontario, Canada (March 2020 to December 2021). Exposures included self-reported Canadian language ability (CLA) at arrival and immigration category (economic class, family class and refugee). The primary outcome was the visit modality (inperson/virtual) measured as a rate of physician-based mental healthcare visits. Modified Poisson regression model estimated adjusted rate ratios (aRRs) with 95% CIs.</p><p><strong>Results: </strong>Among 22 420 immigrants, 12 135 (54%) did not have CLA (economic class: 6310, family class: 2207, refugees: 3618) and 10 285 did (economic class; 6293, family class: 1469, refugees: 2529). The cohort's mean age (SD) was 12.0 (4.0) years and half (50.3%) were female. Of 71 375 mental health visits, 47 989 (67.2%) were delivered virtually. Compared with economic class immigrants with CLA (referent), refugees with and without CLA had a lower risk of virtual care utilisation (CLA: aRR 0.89, 95% CI 0.86 to 0.93; non-CLA: aRR 0.80, 95% CI 0.77 to 0.83), as did family class immigrants with CLA (aRR 0.96, 95% CI 0.92 to 0.99). No differences in virtual care utilisation were observed among economic class immigrants with CLA and other immigrant groups.</p><p><strong>Conclusions: </strong>Language ability at arrival and immigration category are associated with virtual mental healthcare utilisation. Whether findings reflect user preference or inequities in accessibility, particularly for refugees and those without CLA at arrival, warrants further study.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"997-1002"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142279665","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":"Towards evidence-based medicine for paediatricians.","authors":"Bob Phillips","doi":"10.1136/archdischild-2024-328184","DOIUrl":"https://doi.org/10.1136/archdischild-2024-328184","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":"109 12","pages":"1036"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142674920","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":"Highlights from the literature.","authors":"","doi":"10.1136/archdischild-2024-328204","DOIUrl":"https://doi.org/10.1136/archdischild-2024-328204","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":"109 12","pages":"1044"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142674704","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":"Retrospective validation of the SPOT PEWScore using over 2 million inpatient observations.","authors":"Samiran Ray, Duncan Shepherd","doi":"10.1136/archdischild-2024-327393","DOIUrl":"10.1136/archdischild-2024-327393","url":null,"abstract":"","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"1040-1041"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142103771","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":"Improving knowledge of rare disorders since 1993: the Australian Paediatric Surveillance Unit.","authors":"Elizabeth J Elliott, Suzy Teutsch, Carlos Nunez, Anne Morris, Guy D Eslick","doi":"10.1136/archdischild-2023-326116","DOIUrl":"10.1136/archdischild-2023-326116","url":null,"abstract":"<p><p>The Australian Paediatric Surveillance Unit (APSU), established in 1993 to address the paucity of national data on rare childhood disorders, has become an invaluable research resource. It facilitates prospective, active surveillance for a variety of rare disorders, with monthly reporting by ~1500 paediatricians, who are invited to notify incident cases and provide demographic and clinical data. APSU is highly collaborative (used by >400 individuals/organisations), patient-informed and productive (>300 publications). In 30 years, 72 studies have been initiated on rare infections, and genetic, psychological and neurological disorders, and injuries. Return rates of monthly report cards were >90% for 30 years and paediatricians have provided data for >90% of notified cases. Although there are limitations, including case underascertainment in remote regions, APSU often provides the only available national data. APSU has assisted the government in reporting to the WHO, developing national strategies, informing inquiries and investigating disease outbreaks. APSU data have informed paediatrician education, practice, policy, and service development and delivery. APSU was integral in establishing the International Network of Paediatric Surveillance Units (INoPSU) and supporting development of other units. APSU's expanded remit includes one-off surveys, hospital audits, systematic reviews, studies on the impacts of rare disorders on families, surveillance evaluations, and joint studies with INoPSU members. Paediatricians value the APSU, reporting that APSU data inform their practice. They must be congratulated for an outstanding collective commitment to the APSU, in providing unique data that contribute to our understanding of rare disorders and support optimal, evidence-based care and improved child health outcomes.</p>","PeriodicalId":8150,"journal":{"name":"Archives of Disease in Childhood","volume":" ","pages":"967-979"},"PeriodicalIF":4.3,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140915691","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}