Objectives: The aim of the study was to describe the longitudinal development of health-related quality of life (HRQOL) and fatigue in children with chronic intestinal failure (CIF) on home parenteral nutrition (PN) and compare these children to the general population.
Methods: Prospective, observational study conducted over 7 years in patients suffering from CIF receiving home PN from 2 tertiary hospitals in the Netherlands. Every 6 months, parents (if child <8 years old) or patients (if child ≥8 years old) completed 2 questionnaires: Pediatric Quality of Life Inventory 4.0 (PedsQL) Generic and Fatigue on the KLIK (kwaliteit van leven in kaart [Dutch Acronym for Quality of Life in Clinical Practice]) Patient Reported Outcome Measures portal, which were compared with the general population. Linear mixed models (LMMs) were constructed to investigate the course of HRQOL over time.
Results: Thirty-five patients were included (40% girls). At time of last KLIK contact, patients received HPN for a median of 5.3 years (interquartile range [IQR]: 2.9-9.7). In total, 272 questionnaires were completed. PedsQL generic total score for ages 5 to 7 and 8 to 12 years was significantly lower than the general population (P < 0.01 for both age groups) with effect sizes of 0.73 and 0.71, respectively. PedsQL fatigue total score for ages 5 to 7 years was also significantly lower (P = 0.01; effect size 0.70). LMMs for PedsQL Generic and Fatigue total score 2 to 7 and 8 to 18 years showed no significant coefficient for duration of home PN.
Conclusions: Children suffering from CIF receiving home PN ages 5 to 12 years report lower HRQOL scores than the general population. HRQOL and fatigue do not change during long-term treatment with home PN in these children.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8673843 | PMC |
| http://dx.doi.org/10.1097/MPG.0000000000003329 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Background: Despite the significant public health burden of maternal mental health disorders in sub-Saharan Africa (SSA), limited data are available on their effects on early childhood development (ECD), nutritional status, and child health in the region.
Aims: This study investigated the association between maternal mental health and ECD, nutritional status, and common childhood illnesses, while controlling for biological, social, financial, and health-related factors and/or confounders.
Method: As part of the Innovative Partnership for Universal and Sustainable Healthcare (i-PUSH) program evaluation study, initiated in November 2019, a cohort of low-income rural families, including pregnant women or women of childbearing age with children under five, was recruited for this study.
Estimated pulse wave velocity associated with cognitive phenotypes in a rural older population in China: A cohort study.
Alzheimers Dement
January 2025
Department of Neurology, Shandong Provincial Hospital affiliated to Shandong First Medical University, Jinan, Shandong, P. R. China.
Introduction: To examine the longitudinal association between estimated pulse wave velocity (ePWV) and cognitive phenotypes in a rural Chinese older population.
Methods: This population-based study included 1857 dementia-free participants (age ≥60 years) who were examined in 2014 and followed in 2018. ePWV was calculated using age and mean blood pressure (MBP).
Neonatal inflammation and near-term white matter microstructure in infants born very preterm.
Neuroimage Rep
December 2024
Department of Pediatrics, Division of Developmental-Behavioral Pediatrics, Stanford University, Stanford, CA, USA.
Background: Severe neonatal inflammatory conditions in very preterm infants (VPT: <32 weeks gestational age, GA) are linked to adverse neurodevelopmental outcomes. Differences in white matter (WM) microstructure of the corpus callosum (CC) have been observed at age 6 in VPT children with a history of severe neonatal inflammation. The goal of this study was to determine whether these CC differences can be detected at term-equivalent age using diffusion MRI (dMRI), and whether neonatal inflammation is associated with altered WM in additional tracts implicated in the encephalopathy of prematurity.
View Article and Find Full Text PDFAmyloid-related changes in fluency in patients with subjective cognitive decline.
Alzheimers Dement (Amst)
January 2025
Alzheimer Center Amsterdam, Neurology Amsterdam University Medical Center Amsterdam the Netherlands.
Introduction: We examined semantic and phonemic fluency in individuals with subjective cognitive decline (SCD) in relation to amyloid status and clinical progression.
Methods: A total of 490 individuals with SCD (62 ± 8 years, 42% female, 28% amyloid-positive, 17% clinical progression) completed annual fluency assessments (mean ± SD follow-up 4.3 ± 2.
Mentoring Fellows into Career Educators through a Multispecialty Clinician-Educator Course.
ATS Sch
December 2024
Division of Pulmonary, Critical Care, Sleep Medicine & Physiology and.
Background: Subspecialty fellows are a unique group of trainees for whom there currently exist few opportunities to pursue formal training as clinician-educators, as singular fellowship programs often face significant obstacles to implementing such coursework.
Objective: To develop, implement, and assess a clinician-educator course for fellows from multiple subspecialty fellowships at a single large academic medical center.
Methods: Our course, entitled Fellow as Clinician-Educator, was initiated across numerous fellowship programs from August 2021 to April 2023 at University of California San Diego Health.
Want 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!