Abstract
Background Short bowel syndrome (SBS) has an impact on children and their families not only
physically, but also emotionally, mentally, and socially. This study aimed to evaluate
quality of life and family impact in patients with SBS, using the Pediatric Quality
of Life Inventory (PedsQL) measurement model.
Materials and Methods PedsQL questionnaires were administered to patients with SBS followed at the Pediatric
Surgery of Royal Manchester Children's Hospital. The scores were compared between
two groups differing in age (children <5 y vs. >5 y) and with known-groups from literature
published by Varni et al.
Results Forty-three patients were sent the questionnaires, and 30 (70%, 17 < 5 and 13 > 5)
responded. Family Impact Module failed to distinguish between families of children
younger and older than 5 years of age. In contrast, it distinguished between families
with SBS children and the ones with children in a long-term care facility. Healthcare
satisfaction was worse in families of children over 5 years regarding information
received, inclusion of the family, and communication. When compared with normal population,
SBS children scored worse on Generic Core Scales for all domains except for emotional
functioning.
Conclusion Although advances have been made on the treatment of children with SBS, and improvements
have been reached on home PN, this condition is still significantly affecting the
quality of life of children and their families. The future quality control of medical
care must have greater focus on psychosocial and emotional functioning, aiming for
the best possible quality of life.
Keywords
short bowel syndrome - health-related quality of life - Pediatric Quality of Life
Inventory
