Quality of life in pediatric intestinal failure: A scoping review.

Background: Interest in quality of life (QoL) of children with intestinal failure (IF) has increased in recent years, driven by improved survival rates. Conceptualization and measurement of QoL remains understudied. As such, we conducted a scoping review to systemically catalogue measures of QoL, collate existing findings about QoL among IF patients, and examine risk and protective factors. Methods: A systemic search was conducted across four databases (MEDLINE, EMBASE, PsychINFO, CINAHL) from inception to May 6, 2024. Included articles had to explicitly operationalize and measure QoL among pediatric IF patients (< 18 years of age). Results: Thirty-three articles met inclusion criteria from an initial screen of 2124. Across studies, QoL was most frequently measured through standardized questionnaires, with the PedsQL most frequently employed. On self-report, patients reported worse health-related QoL, as well as lower physical, social, and school functioning, compared to controls. Adolescents with IF reported worse QoL than children. Youth and caregivers diverged in their reporting on QoL, with caregivers reporting worse overall QoL outcomes than children. Medical (bowel functioning), social (participation in activities with peers), and familial (parental stress and anxiety) risk and protective factors also emerged. Conclusions: IF has been found to have a negative impact on QoL for children and caregivers. It will be important to establish a standardized IF-specific QoL questionnaire to capture IF-relevant medical and treatment parameters, as well as include an evaluation of physical, emotional, social, psychological, and school functioning. Our findings help lay groundwork for establishing clinical guidelines for patient assessment and monitoring.