Cross-sectional studies indicate that children suffering from chronic intestinal failure and receiving home parenteral nutrition carry an increased risk of impaired health-related quality of life and fatigue.
Furthermore, survival in these patients is increasing thus more focus must be given to long-term outcomes.
Nagelkerke SCJ. et al., in their recent study, described 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 compared these children to the general population.
They conducted this study over 7 years in patients suffering from CIF receiving home PN. Parents (if child <8 years old) or patients (if child ≥8 years old) were given 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 to complete, every 6 months, which were then compared with the general population. Linear mixed models (LMMs) were designed to investigate the course of HRQOL over time.
At the time of last KLIK contact, patients received HPN for a median of 5.3 years. They received 272 completed questionnaires. And found PedsQL generic total score for ages 5 to 7 and 8 to 12 years to be significantly lower than the general population with effect sizes of 0.73 and 0.71, respectively; and the PedsQL fatigue total score for ages 5 to 7 years also to be markedly lower. Furthermore, they also observed that LMMs for PedsQL Generic and Fatigue total scores 2 to 7 and 8 to 18 years had no significant coefficient for the duration of home PN.
Thus, children suffering from CIF, aged 5 to 12 years, receiving home PN have lower HRQOL scores than the general population. And their HRQOL and fatigue do not change during long-term treatment with home PN.
Nagelkerke SCJ, van Oers HA, Haverman L., et al. Longitudinal Development of Health-related Quality of Life and Fatigue in Children on Home Parenteral Nutrition. Journal of Pediatric Gastroenterology and Nutrition. 2022;74(1): 116-122. doi: 10.1097/MPG.0000000000003329
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