RESUMEN
OBJECTIVES: The objective was to measure health-related quality of life (HRQoL) of children following treatment of all-cause tracheomalacia with aortopexy. METHODS: Children ≥5 years and parents of children <18 years who had undergone aortopexy completed the Paediatric Quality of Life Inventory (PedsQL4.0). Scores were compared to published norms. RESULTS: Completed questionnaires were received from 35 parents (65%) and 10 children (38%). Median age at aortopexy was 9.8 months (1 month-12.7 years) and median years of follow-up was 2.6 (4 months-6.9 years). Children who completed questionnaires had a median age of 8.4 (5.7-13.4) years. Parent and child-reported total PedsQL scores were 69.61 (SD : 19.74), and 63.15 (SD : 20.40) respectively. Half of parents and 80% of children reported scores suggesting poor HRQoL outcomes. Parent-reported total, physical and psycho-social scores were lower than those of healthy children and those with acute illness but comparable to children with chronic health conditions and cardiovascular disease. Similarly, children themselves reported comparable total scores to children with chronic illness but child-reported psycho-social scores were lower in the aortopexy group than any other group. There was no association between PedsQL scores and cause of malacia, age or time since aortopexy. The presence of complex congenital comorbidities had a significant (p < 0.05) impact on HRQoL scores. CONCLUSIONS: Following aortopexy children remain at risk of poor HRQoL, especially those with complex comorbidities. HRQoL reported by both parent and child provides important insight into the lives of children following this procedure. Further longitudinal and qualitative study are required to better understand this complex group.
RESUMEN
Aims: Computed tomography colonography (CTC) is seen as a more tolerable alternative to colonoscopy, but patients struggle with the steps required for optimal diagnostic imaging. This prospective study aims to understand the experience of patients undergoing CTC. Methods: A survey was completed by a convenience sample of patients before and after CTC over 7 months. The 13-item questionnaire covered pre-test information, overall and specific experience of the test. The responses were tabulated and analyzed using descriptive statistics. Qualitative free-text responses were coded for content and thematic analysis. Results: At a response rate of 51%, surveys were received from 41 patients. Overall, most patients (54%) found the investigation better than expected. However, 18% stated they were not informed of potential side effects. Side effects were experienced by 49% of patients, including diarrhea (34%) and abdominal pain (24%). About 59% experienced discomfort with gas insufflation, and 86% found turning during the investigation difficult. Conclusion: A significant proportion of patients undergoing CTC experience side effects and difficulties completing the investigation. Patient information is important to improve patient experience of CTC.
