The study demonstrates the strength of the relationship between IGP and IAP in normal individuals. Application of IGP measurement in the critical care patient is necessary to demonstrate its suitability for continuous IAP assessment.
Objectives
To measure the health-related quality of life (HRQOL) and functional status of children with cardiomyopathy and to determine whether they are correlated with sociodemographics, cardiac status, and clinical outcomes.
Study design
Parents of children in the Pediatric Cardiomyopathy Registry completed the Child Health Questionnaire (CHQ; age ≥5 years) and Functional Status II (Revised) (age ≤18 years) instruments. Linear and Cox regressions were used to examine hypothesized associations with HRQOL.
Results
The 355 children evaluated at ≥5 years (median 8.6 years) had lower functioning (CHQ Physical and Psychosocial Summary Scores 41.7 ± 14.4 and 47.8 ± 10.7) than that of healthy historical controls. The most extreme CHQ domain score, Parental Impact-Emotional, was one SD below normal. Younger age at diagnosis and smaller left ventricular end-diastolic dimension z score were associated independently with better physical functioning in children with dilated cardiomyopathy. Greater income/education correlated with better psychosocial functioning in children with hypertrophic and mixed/other types of cardiomyopathy. In the age ≥5 year cohort, lower scores on both instruments predicted earlier death/transplant and listing for transplant in children with dilated and mixed/other types of cardiomyopathy (P < .001). Across all ages (n = 565), the Functional Status II (Revised) total score was 87.1 ± 16.4, and a lower score was associated with earlier death/transplant for all cardiomyopathies.
Conclusions
HRQOL and functional status in children with cardiomyopathy is on average impaired relative to healthy children. These impairments are associated with older age at diagnosis, lower socioeconomic status, left ventricular size, and increased risk for death and transplant. Identification of families at risk for functional impairment allows for provision of specialized services early in the course of disease.
Trial registration
ClinicalTrials.gov: NCT00005391.
Quoted rates of complications following tracheostomy insertion vary greatly, with little information available on complications occurring in patients with tracheostomies in situ or following their removal. A series of 200 consecutive tracheostomies in critical care patients were reviewed for complications occurring at insertion, in patients while cannulated, and following decannulation. A questionnaire was completed at insertion and patients then received weekly follow-up where any complications were recorded. High rates of follow-up were achieved. Insertion complications included: major bleeding (5%), tracheal wall injury (0.5%), pneumothorax (0.5%). Complications in cannulated patients included: prolonged bleeding (5%), pneumothorax (2%), accidental decannulation (4%) and tube blockage (6%). Of the blockages and displacements, 40% resulted in severe hypoxia and in two patients, cardiac arrest. Post-decannulation one patient (0.8%) required immediate recannulation. Initial problems relating to swallowing difficulties post-decannulation were seen to resolve with time. This work demonstrates that tracheostomy can be safely performed in critical care patients although serious adverse events may occur due to tube blockage or displacement.
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