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Health-Related Quality of Life in Pediatric Intestinal Failure from Infancy to Adolescence: An International,
Biren P Modi1, Hannah G Piper2, Christina Belza3
1Department of Surgery and the Center for Advanced Intestinal Rehabilitation (CAIR), Boston Children's Hospital and Harvard Medical School, Boston, MA.
Insights
Pediatric intestinal failure (PIF) impacts health-related quality of life (HRQOL), with adolescents reporting better outcomes than caregivers. Neurologic comorbidity, ostomies, and hospitalizations negatively affect HRQOL in these children.
Area of Science:
- Pediatric gastroenterology
- Quality of life research
- Clinical outcomes assessment
Background:
- Pediatric intestinal failure (PIF) presents significant challenges to children's well-being.
- Understanding health-related quality of life (HRQOL) is crucial for managing PIF.
- Existing data on HRQOL in PIF is limited, necessitating comprehensive evaluation.
Purpose of the Study:
- To prospectively evaluate HRQOL in a large cohort of children with PIF.
- To identify factors associated with diminished HRQOL in pediatric patients with intestinal failure.
- To establish benchmark HRQOL data for PIF across multiple North American centers.
Main Methods:
- A prospective, multi-institutional study involving 336 children with PIF.
- HRQOL assessed using PedsQL Generic Core and Gastrointestinal (GI) Symptoms Scales.
- Multivariable linear regression analyzed factors impacting HRQOL, comparing patient and caregiver reports to reference samples.
Main Results:
- Adolescents reported higher HRQOL and GI Symptoms Scales scores than caregivers.
- Patients and caregivers reported lower HRQOL compared to healthy and chronic GI disease reference groups.
- Neurologic comorbidity, ostomy presence, hospitalizations, and emergency department visits were associated with significantly lower HRQOL.
Conclusions:
- This multicenter study provides essential benchmark HRQOL data for pediatric intestinal failure.
- HRQOL in PIF is lower than in general and chronic GI disease populations.
- Identifying negative HRQOL factors like neurologic comorbidity is key for future interventions.
Objective:
To evaluate health-related quality of life (HRQOL) and associated factors in pediatric intestinal failure (PIF) using a prospective, multi-institutional structure.
Study Design:
HRQOL in 336 children with PIF was assessed using the PedsQL Generic Core and Gastrointestinal (GI) Symptoms Scales at 11 North American intestinal rehabilitation programs. Scores were compared between patients, caregivers' proxy report of patient HRQOL, and reference healthy and chronic GI disease samples. Multivariable linear regression assessed factors associated with HRQOL.
Results:
Adolescents reported significantly higher PedsQL (absolute difference [95% CI] 10 [4.9, 15.2]) and GI Symptoms Scales (5.9 [1, 10.7]) scores than caregivers. Patients and caregivers reported lower HRQOL but higher GI Symptoms Scales scores compared with reference samples. On multivariable analysis, neurologic comorbidity had the strongest negative impact on HRQOL for patients (adjusted coefficient -12.3 [95% CI -21.5, -3.1]) and caregivers (-11.9 [-17.7, -6.2]), and caregivers of 8-12-year-olds independently reported the lowest HRQOL scores (-13.5 [-23, -3.9]). Clinical factors with negative impact on HRQOL included ostomy presence (-11.4) and hospitalizations (-7.9) for caregivers and emergency department visits (-10.1) for patients.
Conclusions:
This large, multicenter study provides benchmark data for HRQOL in PIF. Adolescents reported a higher HRQOL than caregivers. HRQOL in PIF was lower than reference samples. Multiple independent factors with negative impact on HRQOL were identified. Future studies will focus on longitudinal HRQOL trends, impact on families, and interventions targeting risk factors to optimize long-term HRQOL.
Clinical Trial:
Although this is currently an observation only study, it was registered through the National Library of Medicine at ClinicalTrials.gov as "Prospective Multisite Study of Quality of Life in Pediatric Intestinal Failure", study ID NCT04629014.
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