Health-related quality of life and neurodevelopmental outcomes among children with intestinal failure
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In brief
In brief
Review examining health-related quality of life and neurodevelopmental outcomes in children with intestinal failure. Studies show decreased physical health and emotional functioning, particularly in PN-dependent patients, with emerging evidence of motor and mental skill impairments. Authors advocate for disease-specific assessment tools and robust long-term neurodevelopmental studies.
Written by the GCMD Library team from the article.
Publication date: August 2018
Source: Seminars in Pediatric Surgery, Volume 27, Issue 4
Author(s): Maria Hukkinen, Laura Merras-Salmio, Mikko P Pakarinen
Abstract
Treatment results of pediatric intestinal failure have improved markedly during the last decades. With improved survival the attention is turning to other essential outcomes including quality of life and neurodevelopment. So far, relatively few studies with limited number of patients and variable methodology have addressed these issues. Based on these studies using generic health related quality of life tools, children with intestinal failure demonstrate decreased physical health, while PN-dependence is also associated with compromised emotional functioning. Impairments of social functioning are frequently observed among older children and parents. Few recent studies on neurodevelopment imply significant impairments in motor and mental skills among children with intestinal failure despite small sample sizes and limited follow-up times. Development of a disease-specific survey designed for the pediatric intestinal failure population could better reveal the health issues with greatest impact on quality of life. Robust studies with appropriate methodology on neurodevelopment in pediatric intestinal failure with extended follow-up times are urgently needed. Quality of life and neurodevelopment requires greater attention from medical professionals managing children with intestinal failure.