Temple Street Children's University Hospital

Patients are turning to the internet to access educational materials to help them make healthcare decisions, making readability an important factor. This cross-sectional study assessed the readability of online patient education materials for myopia management treatments that have regulatory approval. The top 10 Google search results from May 2024 for freely available online patient information on myopia management modalities and regulatory-approved products in Canada and Australia were analysed for readability. The modalities included orthokeratology, myopia control spectacle lenses, myopia control soft contact lenses and atropine. The products included MiYOSMART® [HOYA®], Stellest® [Essilor®], MyoCare® [ZEISS], MiSight® 1 day [CooperVision®], ACUVUE® Abiliti® 1-Day [Johnson & Johnson], NaturalVue® Multifocal 1 Day [VTI], ACUVUE® Abiliti® Overnight [Johnson & Johnson] and Eikance [Aspen Pharmacare Australia]. These searches gave 120 results. Readability was assessed with Flesch Reading Ease Score (FRES), Flesch-Kincaid Grade Level (FKGL), Gunning Fog Index (GFI), Simple Measure of Gobbledygook (SMOG) Index and Coleman Liau Index (CLI). Additionally, websites were scored on Journal of the American Medical Association (JAMA) benchmark criteria. Statistical analysis was performed with two-tailed tests. Of 120 websites, none met the recommended sixth-grade reading level across all readability indices. There were 13 websites meeting at least one readability index, 10 being product-related. There were seven websites satisfying all four JAMA benchmarks, while the majority met one. There was a weak positive relationship between product search rank and readability (SMOG p = 0.02, GFI p = 0.02) and a weak negative relationship between JAMA benchmarks and readability for both modality (CLI p = 0.045) and product (CLI p = 0.049). Online information about myopia management is generally written above the recommended sixth-grade reading level and does not meet all JAMA benchmarks. Websites that appear as top search results do not necessarily have easier readability. The readability of online patient education materials may influence access to treatment and outcomes.

Changes in glycosylation can serve as markers for rare genetic disorders, including lysosomal storage diseases (LSDs). Nephropathic Cystinosis (NC), caused by mutations in the CTNS gene, is characterised by cystine accumulation in lysosomes due to dysfunctional cystinosin, a heavily N-glycosylated lysosomal transporter. We analysed total serum and IgG N-glycosylation using hydrophilic interaction ultra performance liquid chromatography (HILIC-UPLC) to explore the diagnostic biomarker capabilities and their pathophysiological relevance in NC. In this double-blind study (n = 12), we examined N-glycosylation of total serum and serum IgG from Irish participants with and without NC. Dimensionality reduction methods were used applying their glycan data to predict NC status, yet only modest predictive power was observed (66.6% for serum and 50% for IgG N-glycosylation). However, upon unblinding the data, we identified significant differences in specific serum N-glycosylation in NC, particularly in sialylation. These findings provide the first evidence that serum N-glycosylation is altered in NC. These changes may indicate disease-associated systemic alteration including dysregulation in N-glycosylation pathway. It provides justification for the need for a larger validation study and invites further exploration of its role in NC pathophysiology. We provide key recommendations for age stratification for studying serum, plasma and IgG N-glycans in juvenile cohorts as they display unique profiles compared to adult populations, an important consideration for all juvenile studies, even beyond the scope of rare diseases.

Limited research has investigated young people's opinions on health measures that are used in clinical and research settings. This study aimed to describe young people's views on research methods utilised in a longitudinal birth cohort. It also aimed to explore the feasibility of (i) blood pressure and a fitness assessment as a substitute for blood biomarkers; (ii) foot length as a substitute for maternal-reported stage of puberty and (iii) neck and mid-upper arm circumference as a substitute for body composition analysis in preteens (9-11-year-olds). This is a mixed-methods analysis of preteens (n = 408) who were born into the ROLO longitudinal birth cohort study. Weight, height, skinfold thickness, circumferences, body composition, blood pressure, fitness (shuttle run test score), blood biomarkers, stage of puberty and foot length were obtained at 9-11 years of age. A subgroup completed a Likert-style acceptability questionnaire after their study visit and took part in public and patient involvement to gain further insight into opinions of health measures utilised. Statistical comparisons and linear regression models explored associations in the total group and stratified by child sex. Results were adjusted for multiple testing. Of 50 preteens who completed an acceptability questionnaire after their study visit, no participants rated the study measurements, exercises or questionnaires as unacceptable research methods, and only 5% rated providing a blood sample as unacceptable. Blood pressure percentiles and fitness scores were not strongly associated with blood biomarkers. In the total group, after adjustment for multiple testing, neck and mid-upper arm circumference were positively associated with body mass index z-score (Beta [B] = 0.42, 95% confidence interval [CI] = 0.34,0.49, p < 0.001, q = 0.015; B = 0.32, 95% CI = 0.29, 0.35, p < 0.001, q = 0.005), waist circumference (cm) (B = 2.83, 95% CI = 2.22, 3.45, p < 0.001, q = 0.016; B = 2.10, 95% CI = 1.78, 2.41, p < 0.001, q = 0.010) and body fat (%) (B = 2.26, 95% CI = 1.66, 2.87, p < 0.001, q = 0.018; B = 2.05, 95% CI = 1.80, 2.30, p < 0.001, q = 0.008), respectively. Research methods were acceptable to preteens. Neck and mid-upper arm circumference may serve as simple and less burdensome indicators of adiposity. Future research should explore minimally invasive blood sampling techniques. Preteens contributed to the manuscript analysis by sharing their insights and ideas related to health measurements used in a longitudinal birth cohort study. Their input provided important perspectives on the acceptability of health measures in this age group that may have important implications for researchers and clinicians conducting health research with youth.

Public and Patient Involvement (PPI) refers to the active collaboration of patients and the public in health and social care research decision-making, enhancing research success, cost-effectiveness, and impact. Children, young people, and their families bring unique lived experiences to PPI in research, relating to others with similar experiences, while factors like age, cognitive maturation, and developmental stage create differences between researchers and patients or the public. Collaboration with children, young people, and their families should be guided by specific project context and a strong evidence base. However, existing systematic reviews reveal inconsistencies in reporting and a lack of standardised methods for these groups, limiting effective PPI implementation. This protocol details methods for an umbrella review to identify the current state-of-science and future priorities for collaborating with children, young people and families in health and social care research. The protocol was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) guidelines, which will also direct the reporting of findings. The Joanna Briggs Institute's methodology for conducting umbrella reviews will be adhered to throughout. MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane, DARE, JBI Evidence Synthesis, PROSPERO, grey literature databases, targeted international networks, and the Google search engine will be searched for systematic reviews on PPI with children, young people, and families in health and social care research. Two reviewers will independently conduct eligibility screening, data extraction, and quality appraisal. This umbrella review will provide critical insights into the state-of-science of PPI with children, young people and families in health and social care research. The synthesis of findings could yield important information for researchers and other stakeholders conducting health and social care research in collaboration with children, young people and families by highlighting key patterns, gaps, and recommendations to guide future PPI practices, policies, and research. This umbrella review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (Prospero registration number: CRD42024608935, registered 14th of November 2024).

Childhood obesity is a major healthcare challenge, with those from lower socio-economic status facing a disproportionate burden. This commentary highlights the current knowledge gap in understanding the drivers of this association. It highlights the need for more inclusive research studies to be undertaken into the topic, and the need to leverage routinely collected clinical data to help tackle the obesity epidemic.

There is no need for any precautions in using isotretinoin in peanut allergies. The existing advice was based on flawed risk assessments and has been overtaken by human studies that show safety.

Abstract The partnership between music therapy and speech-language pathology is gaining recognition as an effective approach in the rehabilitation of young children with acquired communication impairments (ACIs). Yet, there remains a notable gap in understanding the distinctive contributions and challenges inherent in this collaborative practice. This study explored the perspectives of music therapists (MTs) and speech-language pathologists (SLPs) regarding the unique role of this collaborative effort, the elements of successful collaboration, and the methods implemented by clinicians to evaluate outcomes. Semi-structured interviews were conducted with nine pairs of MTs and SLPs in rehabilitation facilities across seven countries. These interviews were analyzed thematically using Van Manen’s approach to hermeneutic phenomenology. Three themes arose from the data: (a) the role of collaborative music therapy and speech-language pathology, (b) building blocks of successful collaboration, and (c) evaluating collaborative practices. This collaboration fosters a unified strategy aimed at achieving shared language and communication goals. By combining their distinct expertise, MTs and SLPs can address the complex and varied needs of children with ACIs more effectively. However, further research is essential to comprehensively understand the functional outcomes arising from such collaborative endeavors in pediatric ACIs. This is crucial for validating the efficacy and significance of this approach in bolstering language and communication skills and advocating for its wider integration within rehabilitation services.