Review of home paediatric parenteral nutrition on the UK

Area of Science:

• Pediatric Gastroenterology
• Clinical Nutrition
• Health Services Research

Background:

• Home parenteral nutrition (HPN) is a critical, albeit complex and risky, life-sustaining therapy for children with chronic intestinal failure.
• The British Artificial Nutrition Survey (BANS) is the world's largest ongoing study monitoring HPN in the UK since 1996.

Purpose of the Study:

• To audit and monitor HPN in UK children.
• To identify common diagnoses, patient demographics, and the impact of HPN on families.

Main Methods:

• Data collection from health professionals and family questionnaires via the BANS registry.
• Analysis of patient data (June 1996-September 1999) and family-reported outcomes.

Main Results:

• 81 children were registered; short-bowel syndrome was the most common diagnosis, with 41% under one year old.
• Low hospital readmission rates (<2%) indicate significant home care burden on families.
• Family questionnaires revealed common sleep disturbances and a decline in family life and quality of life.

Conclusions:

• HPN is vital for pediatric chronic intestinal failure but places substantial care burdens on families.
• Significant psychosocial challenges, including sleep disturbance and reduced quality of life, impact families managing HPN.
• Further qualitative research is essential to understand and address the long-term psychosocial needs of families caring for children on HPN.