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

• Published in: Journal of pediatric gastroenterology and nutrition Vol. 74; no. 1; pp. 116 - 122
• Main Authors: Nagelkerke, Sjoerd C.J., Oers, Hedy A., Haverman, Lotte, Vlug, Lotte E., Koning, Barbara A.E., Benninga, Marc A., Tabbers, Merit M.
• Format: Journal Article
• Language: English
• Published: United States Lippincott Williams & Wilkins 01.01.2022
• Subjects: Child; Child, Preschool; chronic intestinal failure; fatigue; Fatigue - epidemiology; Fatigue - etiology; Female; health‐related quality of life; Humans; longitudinal; Male; Original : Nutrition; Parenteral Nutrition, Home; pediatric; Prospective Studies; Quality of Life; Surveys and Questionnaires
• ISSN: 0277-2116; 1536-4801
• DOI: 10.1097/MPG.0000000000003329

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.