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Observational Study
. 2022 Jan 1;74(1):116-122.
doi: 10.1097/MPG.0000000000003329.

Longitudinal Development of Health-related Quality of Life and Fatigue in Children on Home Parenteral Nutrition

Sjoerd C J Nagelkerke  1 , Hedy A van Oers  2 , Lotte Haverman  2 , Lotte E Vlug  3 , Barbara A E de Koning  3 , Marc A Benninga  1 , Merit M Tabbers  1
Affiliations
Observational Study

Longitudinal Development of Health-related Quality of Life and Fatigue in Children on Home Parenteral Nutrition

Sjoerd C J Nagelkerke et al. J Pediatr Gastroenterol Nutr. .

Abstract

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.

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Conflict of interest statement

S.N. and M.T. have received an investigator-initiated research grant from the Baxter Healthcare Corporation, Deerfield, IL and an ESPGHAN networking grant. M.B. has been a consultant for Shire, Norgine, Tramedico, Allergan, Danone, Novalac, FrieslandCampina, and Sensus, and has received honoraris from Abbott as a speaker. The remaining authors report no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
Course of Pediatric Quality of Life Inventory 4.0 generic total score SD for ages 2 to 7 years (proxy-report) and 8 to 18 years (self-report) (A and B, respectively) and PedsQL fatigue total score SD for ages 2 to 7 years and 8 to 18 years (C and D, respectively) over time of patients suffering from chronic intestinal failure. Bold line 0 SD indicates population mean. Error bars indicate a 95% confidence interval. PedsQL = Pediatric Quality of Life Inventory 4.0.
See this image and copyright information in PMC

References

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