Objectives: Chronic diseases impact people's quality of life (QoL). Behçet's disease (BD) is a multisystemic chronic disease characterized by vasculitis of various vessels. We aimed to assess QoL in paediatric BD (PEDBD) patients and their parents.
Methods: We conducted a cross-sectional study from June to December 2022, including PEDBD patients meeting classification criteria. We recorded clinical characteristics and assessed QoL using PedsQL for patients and WHOQOL-Bref for parents.
Results: A study of 38 patients (60.5% girls, 39.5% boys), median age 15.5 years (range 10-17), with oral aphthae and various mucocutaneous symptoms: genital ulcers (78.9%), pseudofolliculitis (76.3%), erythema nodosum (23.6%), and some with uveitis (13.1%), vascular (13.1%), neurological (10.5%), and gastrointestinal (5.2%) involvement. All were in remission under treatment. Median PedsQL scores: total 74.5 (range 40-94.8), physical health 76.5 (43-100), psychosocial health 75 (25-92); 14 patients scored below cutoff. Girls had lower physical health scores (P = .004), and disease duration correlated negatively with PedsQL score (r = -0.648, P = .001). Median WHOQOL score for parents: 50 (25-100), with 20 scoring below cutoff.
Conclusion: One-third of PEDBD children and over half of their parents had low QoL. Disease duration and gender, as with many chronic illnesses, correlated with QoL in PEDBD.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1093/mr/roae031 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Epidemiological Features, Clinical Symptoms, and Environmental Risk Factors for Notifiable Japanese Encephalitis in Taiwan From 2008 to 2020: Retrospective Study.
JMIR Public Health Surveill
January 2025
School of Public Health, National Defense Medical Center, Taipei City, Taiwan.
Background: Japanese encephalitis (JE) is a zoonotic parasitic disease caused by the Japanese encephalitis virus (JEV), and may cause fever, nausea, headache, or meningitis. It is currently unclear whether the epidemiological characteristics of the JEV have been affected by the extreme climatic conditions that have been observed in recent years.
Objective: This study aimed to examine the epidemiological characteristics, trends, and potential risk factors of JE in Taiwan from 2008 to 2020.
Use of the FHTHWA Index as a Novel Approach for Predicting the Incidence of Diabetes in a Japanese Population Without Diabetes: Data Analysis Study.
JMIR Med Inform
January 2025
Department of Endocrinology and Metabolism, The First Affiliated Hospital, Jiangxi Medical College, Nanchang University, Nanchang, China.
Background: Many tools have been developed to predict the risk of diabetes in a population without diabetes; however, these tools have shortcomings that include the omission of race, inclusion of variables that are not readily available to patients, and low sensitivity or specificity.
Objective: We aimed to develop and validate an easy, systematic index for predicting diabetes risk in the Asian population.
Methods: We collected the data from the NAGALA (NAfld [nonalcoholic fatty liver disease] in the Gifu Area, Longitudinal Analysis) database.
Evaluation of Lyso-Gb1 as a biomarker for Gaucher disease treatment outcomes using data from the Gaucher Outcome Survey.
Orphanet J Rare Dis
January 2025
Department of Gastroenterology, Hepatology and Infectious Diseases, University Hospital, Heinrich- Heine University, Düsseldorf, Germany.
Background: Patients with Gaucher disease (GD) require continual monitoring; however, lack of specific disease biomarkers was a significant challenge in the past. Glucosylsphingosine (lyso-Gb1) has been shown to be a reliable, key, specific, and sensitive biomarker for diagnosis, prognosis, and treatment response in clinical studies of patients with GD. We evaluated the change in lyso-Gb1 concentration over time following enzyme replacement therapy in patients with confirmed GD using real-world data from the Gaucher Outcome Survey disease registry.
View Article and Find Full Text PDFEvaluation of a peer support group programme for vulnerable host population and refugees living with diabetes and/or hypertension in Lebanon: a before-after study.
Confl Health
January 2025
London School of Hygiene and Tropical Medicine, Department of Non-Communicable Diseases Epidemiology, Keppel street, London, WC1E 7HT, UK.
Background: Non-communicable diseases (NCDs) are the leading cause of death globally, and many humanitarian crises occur in countries with high NCD burdens. Peer support is a promising approach to improve NCD care in these settings. However, evidence on peer support for people living with NCDs in humanitarian settings is limited.
View Article and Find Full Text PDFTemporal trends in biosecurity in Irish pig herds using a standardized scoring system.
Ir Vet J
January 2025
Animal Health Ireland, 4-5 The Archways, Carrick On Shannon, Co. Leitrim, N41 WN27, Ireland.
Background: Biosecurity measures are crucial to the introduction and spread of pathogens both within and between farms. External biosecurity focuses on preventing pathogens from entering or leaving the farm, while internal biosecurity aims to limit or stop the spread of pathogens within the farm. Implementing biosecurity measures not only protects animals from disease but also has positive effects on productivity, welfare and farm profitability.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!