Health-Related Quality of Life in Pediatric Patients Requiring Home Parenteral Nutrition

Investigators assessed longitudinal changes in health-related quality of life and fatigue scores among pediatric patients receiving home parenteral nutrition.

Pediatric patients receiving home parenteral nutrition (PN) have a lower health-related quality of life (HRQOL) score than the general population, which remains consistent over long-term treatment, according to a study published in The Journal of Pediatric Gastroenterology and Nutrition.

The prospective, longitudinal study included 35 pediatric patients receiving home PN due to chronic intestinal failure. Patients or their parents completed 2 HRQOL questionnaires every 6 months between 2012 and 2020. The first questionnaire was a generic pediatric questionnaire while the second focused specifically on fatigue.

Investigators also collected relevant disease history for each patient, such as the underlying cause of chronic intestinal failure, premature birth status, age at the start of PN, age at discharge with home PN, and bowel characteristics.

In total, 40% of patients were girls; 43% were born prematurely, with a median gestational age of 38 weeks. The most prevalent underlying diseases were short bowel syndrome (43%) and motility disorders (35%).

HRQOL generic scores for patients aged 5 to 7 and 8 to 12 years were significantly lower than that of the general population. Patients aged 5 to 7 years also had significantly lower HRQOL fatigue scores compared with healthy control patients. Of the disease history characteristics, only prematurity was a statistically significant factor in HRQOL, resulting in lower fatigue scores. Notably, there was no significant difference between generic scores or fatigue scores based on the duration of home PN.

This study was limited by the small number of patients included in the cohort. Additionally, the 69% participation rate may signify selection bias; patients/parents of children with more severe disease were likely more willing to participate. Future studies that include international populations should be conducted in order to compare the effects of different therapeutic approaches and cultural backgrounds.

“Children ages 5 to 12 years with chronic intestinal failure report lower [HRQOL] and greater fatigue than the general population,” investigators concluded. Researchers believe it is important for clinicians to monitor HRQOL in pediatric patients receiving home PN in order to identify problems and make modifications accordingly.


Nagelkerke S, van Oers H, Haverman L, et al. Longitudinal development of health-related quality of life and fatigue in children on home parental nutrition. J Pediatr Gastroenterol Nutr. 2022;74(1):116-122. doi: 10.1097/MPG.0000000000003329