Psychosocial issues in children with primary intestinal failure and their families

Introduction: Parenteral nutrition has significantly improved the prognosis of children with intestinal failure, but it has an inevitable impact on their lives. The aim of the present study was to assess the psychosocial well-being of these patients and their families. Patients and methods: Two groups of children (cases and controls) were enrolled with their families. Patients with primary intestinal failure aged 2-18 years who required or had previously required parenteral nutritional and healthy controls were included. We used four tests to investigate their quality of life, three administered to parents and one to children. Results: Sixteen children with primary intestinal failure (12 males; mean age 7.2 ± 4.8 years) and 12 healthy controls (6 males; mean age 9.3 ± 4.9 years) were enrolled. The International Classification of Functioning, Disability and Health, Children and Youth Version showed that specific environmental factors were perceived as barriers by patients' caregivers (44% vs 0%; p=0.01) and 5/16 (31%) of them had medium-high levels of anxiety according to the State-Trait Anxiety Inventory. Conclusions: The quality of life of children on parenteral nutrition was only slightly impaired. Parents, instead, showed more anxious behavior related to their children's parenteral nutrition. © 2013 SINPE-GASAPE.