314 research outputs found
Distinguishing features in the presentations of childhood inflammatory brain diseases at a tertiary-care centre
Temporomandibular joint damage in juvenile idiopathic arthritis: Diagnostic validity of diagnostic criteria for temporomandibular disorders
Diagnostic criteria reported in the expanded taxonomy for temporomandibular disorders include a standardised clinical examination and diagnosis (DC/TMD 3.B) of temporomandibular joint (TMJ) damage in patients with juvenile idiopathic arthritis (JIA); however, their validity is unknown
Temporomandibular Involvement and Craniofacial Development in Juvenile Idiopathic Arthritis
Juvenile Idiopathic Arthritis (JIA) is a generalised autoimmune disease, which
starts in childhood. JIA is one of the most frequent occurring autoimmune
diseases in childhood, and concerns approximately 1 in a 1000 children. JIA is
a heterogeneous group of conditions divided into seven different subtypes (see
table 1). These different subtypes all should meet some mutual criteria. These
criteria are; start of the disease before the sixteenth birthday, arthritis persisting
for at least 6 weeks, and all other diagnosis should be excluded. The subtypes are
divided based on the clinical symptoms during the first six months of the disease
according to inclusion and exclusion criteria. These subtypes all have a different
initial presentation, course, and prognosis
Agreement between child- and parent-reported orofacial symptoms in patients with juvenile idiopathic arthritis
Objective: To assess the agreement between child- and parent-reported orofacial symptoms in the Danish version of
the patient questionnaire Assessment of Orofacial Symptoms in Juvenile Idiopathic Arthritis.
Method: This cross-sectional study was conducted at Aarhus University in March 2023. Eligible candidates were
consecutive subjects with juvenile idiopathic arthritis (JIA) and temporomandibular joint involvement accompanied by
a parental proxy for examination in the Craniofacial Clinic. After obtaining written informed consent, the questionnaire was completed individually and separately by the child and the parent without any communication between
them. The level of agreement was analysed using Cohen’s (weighted) kappa for nominal and ordinal outcome
variables (orofacial pain frequency, pain location, jaw function, orofacial symptoms, and changes since last visit)
and the intraclass correlation coefficient for linear outcome variables (orofacial pain intensity and functional disability
of the jaw).
Results: The 34 included dyads had an overall ‘poor’ to ‘moderate’ child–proxy reporting agreement on the
questionnaire for the assessment of JIA-related orofacial symptoms. After dividing the children into two age groups,
< 13 and ≥ 13 years old, we found substantial agreement on pain frequency and moderate to excellent agreement on
pain intensity for the older group. The child–proxy agreement for children aged < 13 years was slight on pain
frequency and poor to moderate on pain intensity.
Conclusion: The child–proxy reporting agreement on JIA-related orofacial symptoms is inconsistent. We suggest
collecting information from both children and parents, especially when assessing orofacial pain and symptoms in
children < 13 years of age
Juvenile idiopathic arthritis (JIA) is associated with considerable financial burden to society: results of a Dutch cost analysis
Analysing prescribing patterns and costs of drug treatment in juvenile idiopathic arthritis in the Netherlands
PReS-FINAL-2322: Outcome of kidney transplantation in paediatric patients with ANCA associated glomerulonephritis: a single-center experience
Genomic Health Literacy Interventions in Pediatrics:Scoping Review
BACKGROUND: The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patients and their parents about genomic concepts through digital health interventions have not been well-established. OBJECTIVE: The primary objective of this scoping review is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients and their parents. The findings from this review will be used to inform future digital health interventions for patient education. METHODS: A scoping review using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents <18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. RESULTS: Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes toward receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge. CONCLUSIONS: This review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision-making related to genomic information. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts
Development of a web-based register for the Dutch national study on biologicals in juvenile idiopathic arthritis: http://www.abc-register.nl
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