Objective: To describe and compare during an acute hospitalization the perceptions of parents, pediatric interns, and pediatric hospitalists regarding the long-term health-related quality of life (HRQoL) of children with severe disabilities when not hospitalized and to identify treatment goals.
Methods: Parents of children with severe disabilities aged 5 to 18 years, as well as the intern and hospitalist caring for the child during acute hospitalizations at a tertiary care center in Salt Lake City, Utah, participated in this study. All participants completed the KIDSCREEN-10 and an investigator-developed survey; a subset was interviewed to qualitatively ascertain perceptions of the child's HRQoL before the current acute illness. Responses were summarized with descriptive statistics and content analysis.
Results: We enrolled 115 subjects. Overall, parents rated the HRQoL of their children significantly higher than did either group of physicians on both the KIDSCREEN-10 (37.4 ± 3.9 vs 29.6 ± 5.5, P < .001) and the investigator-developed survey (30.3 ± 5.9 vs 26.3 ± 5.5, P < .001). Parents described the HRQoL of their children more positively and broadly than did physicians. Parents and physicians also expressed different goals for treatment. Parents expressed optimism despite uncertainty regarding their child's future, whereas physicians anticipated increased medical complications and focused on caregiver burden.
Conclusions: Parents of children with severe disabilities rated their children's long-term HRQoL higher than physicians did. Such discrepancies may increase tensions and hinder shared decision-making efforts during acute hospitalizations. Explicit discussions between parents and physicians regarding the HRQoL of children with severe disabilities and treatment goals may facilitate care processes for everyone involved.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1016/j.acap.2014.02.012 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Extracorporeal membrane oxygenation in trauma: a single-center retrospective observational study.
Eur J Trauma Emerg Surg
January 2025
ECMO Center Karolinska, Pediatric Perioperative Medicine and Intensive Care, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Akademiska straket 14, Stockholm, 17176, Sweden.
Purpose: Globally, trauma is a leading cause of death in young adults. The use of extracorporeal membrane oxygenation (ECMO) in the trauma population remains controversial due to the limited published research. This study aimed to analyze 30-day survival of all the trauma ECMO patients at our center, with respect to injury severity score (ISS) and new injury severity score (NISS).
View Article and Find Full Text PDFPreclinical use of a clinically-relevant scAAV9/SUMF1 vector for the treatment of multiple sulfatase deficiency.
Commun Med (Lond)
January 2025
Rare Disease Translational Center, The Jackson Laboratory, Bar Harbor, ME, USA.
Background: Multiple Sulfatase Deficiency (MSD) is a rare inherited lysosomal storage disorder characterized by loss of function mutations in the SUMF1 gene that manifests as a severe pediatric neurological disease. There are no available targeted therapies for MSD.
Methods: We engineered a viral vector (AAV9/SUMF1) to deliver working copies of the SUMF1 gene and tested the vector in Sumf1 knock out mice that generally display a median lifespan of 10 days.
Since the emergence of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), the need for an effective vaccine has appeared crucial for stimulating immune system responses to produce humoral/cellular immunity and activate immunological memory. It has been demonstrated that SARS-CoV-2 variants escape neutralizing immunity elicited by previous infection and/or vaccination, leading to new infection waves and cases of reinfection. The study aims to gain into cases of reinfections, particularly infections and/or vaccination-induced protection.
View Article and Find Full Text PDFCerebral injury and long-term neurodevelopment impairment in children following severe fetomaternal transfusion: a retrospective cohort study.
Arch Dis Child Fetal Neonatal Ed
January 2025
Neonatology, Willem-Alexander Children's Hospital, Leiden University Medical Center, Leiden, Zuid-Holland, Netherlands.
Objective: Fetomaternal transfusion (FMT) is associated with increased perinatal mortality and morbidity, but data on postnatal outcomes are scarce. Our aim was to determine the incidence of adverse short-termand long-term sequelae of severe FMT.
Design: Retrospective cohort study.
Integrative multi-omics analysis of autism spectrum disorder reveals unique microbial macromolecules interactions.
J Adv Res
January 2025
Proteomics and Metabolomics Unit, Basic Research Department, Children's Cancer Hospital, 57357 Cairo, (CCHE-57357), Egypt; Department of Physiology, Faculty of Veterinary Medicine, Suez Canal University, 41522 Ismailia, Egypt. Electronic address:
Introduction: Gut microbiota alterations have been implicated in Autism Spectrum Disorder (ASD), yet the mechanisms linking these changes to ASD pathophysiology remain unclear.
Objectives: This study utilized a multi-omics approach to uncover mechanisms linking gut microbiota to ASD by examining microbial diversity, bacterial metaproteins, associated metabolic pathways and host proteome.
Methods: The gut microbiota of 30 children with severe ASD and 30 healthy controls was analyzed.
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!