Objective: The current study examined (1) spina bifida (SB) youths' health-related quality of life (HRQOL) compared with nonclinical and chronic health condition (CHC) samples, (2) parent-child agreement regarding HRQOL, and (3) prospective changes in HRQOL.
Methods: Child and parent-proxy reports of Pediatric Quality of Life were collected at two time waves (Time 1: N = 134, ages 8-15 years; Time 2: N = 109, ages 10-17 years) as part of a larger longitudinal study.
Results: SB youth had statistically and clinically reduced physical HRQOL compared with the nonclinical and CHC samples at both time points. There were significant discrepancies between youth and parent-proxy reports of HRQOL; youth reported higher levels of physical and social HRQOL than parents. The majority of parent- and child-reported HRQOL domains remained stable, yet youth-reported social HRQOL increased over time.
Conclusions: Youth with SB are at risk for poor HRQOL. Examining modifiable condition and social-environmental predictors of youth HRQOL will be important in informing future interventions.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4405196 | PMC |
| http://dx.doi.org/10.1093/jpepsy/jsu098 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Application of midnight-noon ebb-flow combined with five-element music therapy in continuous nursing of patients with chronic wounds.
J Eval Clin Pract
February 2025
Ordos Hospital of Traditional Chinese Medicine, Ordos City, China.
Background: To investigate the effect of Midnight-noon Ebb-flow combined with five-element music therapy in the continuous nursing of patients with chronic wounds.
Methods: From March 2022 to November 2023, we recruited 50 eligible chronic wound patients and randomly divided them into two groups according to a random number table: the experimental group (n = 25) and the control group (n = 25). The control group was treated with conventional nursing measures.
Meals, Mealtimes and moments for learning: Assessment of quality in Early Childhood Education and Care services.
Public Health Nutr
January 2025
Queensland Brain Institute, The University of Queensland, 79 Upland Road, St Lucia, QLD Australia 4067.
Objective: Early education and care (ECEC) is part of the everyday life of most children in developed economies presenting exceptional opportunity to support nutrition and ongoing food preferences. Yet, the degree to which such opportunity is captured in policy-driven assessment and quality ratings of ECEC services is unknown.
Design: Abductive thematic analysis was conducted, guided by key domains of knowledge in nutrition literature and examining identified themes within these domains.
Interaction of the Gut-Liver-Brain Axis and the sterolbiome with sexual dysfunction in patients with cirrhosis.
Gut Microbes
December 2025
Division of Gastroenterology, Hepatology, and Nutrition, Virginia Commonwealth University and Richmond VA Medical Center, Richmond, VA, USA.
There is a complex interplay between the gut microbes, liver, and central nervous system, a gut-liver-brain axis, where the brain impacts intestinal and hepatic function while the gut and liver can impact cognition and mental status. Dysregulation of this axis can be seen in numerous diseases. Hepatic encephalopathy, a consequence of cirrhosis, is perhaps the best studied perturbation of this system.
View Article and Find Full Text PDFPatient and wound factors associated with WOUND-Q scales measuring health-related quality of life: An international cross-sectional study.
Wound Repair Regen
January 2025
Research Unit for Plastic Surgery, University of Southern Denmark, Odense, Denmark.
The WOUND-Q is a patient-reported outcome measure for individuals with any type of chronic wound. This study aimed to identify patient and wound factors associated with the four WOUND-Q health-related quality of life (HRQL) scales: Life impact, Psychological, Sleep, and Social. Adults with a chronic wound were recruited internationally through clinical settings between August 2018 and May 2020, and through an online platform (i.
View Article and Find Full Text PDFFrequently asked questions on surrogate endpoints in oncology-opportunities, pitfalls, and the way forward.
EClinicalMedicine
October 2024
Department of Oncology, Queen's University, Kingston, Canada.
Patients with cancer expect prolonged life (overall survival, OS) or better life (quality of life, QOL) from cancer treatments. However, majority of new cancer drugs are now being approved not based on improved OS or QOL, but based on surrogate endpoints such as tumor shrinkage or delayed tumor progression. These surrogate endpoints, including their validity as a proxy for overall survival, differ based on disease settings and lines of treatment but in general, most surrogate measures have weak correlation with outcomes that matter to patients.
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!