Paediatric Intestinal Failure: Are We Measuring What Matters Most?
Evidence Snapshot
Paediatric Intestinal Failure: Are We Measuring What Matters Most?
Over recent decades, improvements in nutritional support and intestinal rehabilitation have transformed outcomes for children living with intestinal failure (IF). As more patients survive into adolescence and adulthood, there is increasing recognition that understanding the day-to-day impact of the condition is just as important as monitoring growth, nutritional status and clinical outcomes.
To better understand the current evidence, Wasif and colleagues1 conducted a scoping review of studies assessing quality of life (QoL) in paediatric IF. Thirty-three studies met the inclusion criteria in what appears to be the first scoping review focused specifically on QoL assessment in paediatric intestinal failure.
What did the review find?
Living with IF impacts multiple aspects of daily life
Across the included studies, children and adolescents with IF consistently reported lower health-related quality of life compared with their healthy peers. The greatest challenges were observed in physical functioning, social participation and school-related activities. These findings suggest that the burden of IF extends well beyond medical management, influencing many aspects of everyday life.
Figure 1: Self-reported quality of life among paediatric IF patients compared to controls:
Interestingly, adolescents often reported poorer quality of life than younger children. This may reflect challenges associated with adolescence and disease self-management, as well as the challenges of balancing treatment requirements with education, social activities and peer relationships.
The burden extends beyond the patient
The review also highlighted a notable difference between patient and caregiver perceptions. In many studies, caregivers reported worse quality of life outcomes than the children themselves, reflecting the significant emotional, practical and psychological impact that IF can have on the wider family unit.
Factors associated with quality of life
Several key factors emerged as important determinants of QoL:
• Bowel-related symptoms and treatment burden
• Participation in social and recreational activities
• Family wellbeing, including parental stress and anxiety
• Opportunities for children to engage with peers and attend school
These findings reinforce the interconnected relationship between physical health, psychosocial wellbeing and family support in the management of paediatric IF.
A need for more meaningful assessment
A key finding from the review was the lack of a standardised intestinal failure-specific QoL assessment tool. While the majority of studies used generic instruments such as the Paediatric Quality of Life Inventory (PedsQL), these measures may not fully capture challenges unique to living with IF, including dependence on parenteral nutrition, central venous access management, feeding difficulties and the practical impact of long-term treatment.
The authors conclude that the development of an IF-specific QoL tool could help healthcare teams better understand patient experiences, monitor changes over time and evaluate the effectiveness of interventions beyond traditional clinical endpoints.
Why this matters for clinical practice
As paediatric IF care continues to evolve, quality of life assessments may provide valuable insights that are not captured through routine clinical monitoring alone.
Understanding how children and families experience the realities of living with IF can help guide more personalised care, facilitate meaningful conversations during clinic visits and identify unmet needs that may otherwise go unnoticed.
We're interested in hearing about your experiences and perspectives relating to clinical practice. We welcome opportunities for scientific discussion and exchange of clinical experience. If your team would be interested in a scientific exchange session with a member of the Fresenius Kabi Scientific Affairs team, please contact us at scientific.affairsUK@fresenius-kabi.com.
1. Wasif F, Johnson D, Gold A. Quality of life in pediatric intestinal failure: a scoping review. Intestinal Failure. 2025;6:100071.