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Raul Silva1, Paula Guerra2, Anabela Rocha3, Miguel Correia1, Ricardo Ferreira4, Jorge Fonseca5, Eduardo Lima6, António Oliveira7, Marta Vargas Gomes8, Diogo Ramos8, Valeska Andreozzi8, Marisa D. Santos3

1. Paediatrics Department, Centro Hospitalar Universitário de Lisboa Central, Lisboa, Portugal
2. Paediatrics Department, Centro Hospitalar Universitário de São João, Porto, Portugal
3. Surgery Department, Centro Hospitalar e Universitário do Porto, Porto, Portugal
4.Paediatrics Department, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
5. Gastroenterology Department, Hospital Garcia de Orta, Lisboa, Portugal
6. Surgery Department, Centro Hospitalar Universitário de São João, Porto, Portugal
7. Surgery Department, Centro Hospitalar de Trás-os-Montes e Alto Douro, Vila Real, Portugal
8. Exigo Consultores, Lisboa, Portugal

- Portuguese Journal of Gastroenterology, September 2022

Introduction: This study aimed to assess the clinical, eco- nomic, and humanistic impact of short-bowel syndrome/chronic intestinal failure (SBS/CIF) in Portugal.
Methods: This is a retrospective multicenter cohort chart review study, with a cross-sectional component for quality-of-life (QoL) evaluation. Inclusion criteria comprised patients with SBS/CIF, aged ≥1 year, with stable parenteral nutrition (PN). Data collection included patient chart review over a 12-month period and patient/caregiver self-report and SF-36/PedsQLTM questionnaires. Main endpoints comprised clinical and PN characterization, healthcare resource use (HRU), direct costs, and patient QoL. Results: Thirty-one patients were included (11 adults and 20 children). Patients’ mean age (standard deviation [SD]) was 57.9 (14.3) years in adults and 7.5 (5.0) years in children, with a mean time since diagnosis of 10.2 (5.9) and 6.6 (4.2) years, respectively. PN was administered for a mean of 5.2 and 6.6 days/week in adults and children, respectively; home PN occurred in 81.8% of adults and 90.0% of children for a mean of 9.6 and 10.8 months/year, respectively. The mean annual number of hospitalizations was 1.9 and 2.0 which lasted for a mean of 34.0 and 29.4 days in adults and children, respectively. Twenty-one and forty hospitalization episodes were reported in adults and children, respectively, of which 71.4% and 85.0% were due to catheter-related complications. Mean annual direct costs per patient amounted to 47,857.53 EUR in adults and 74,734.50 EUR in children, with PN and hospitalizations as the main cost-drivers. QoL assessment showed a clinically significant impaired physical component in adults and a notable deterioration in the school functioning domain in children.
Conclusion: In Portugal, SBS/CIF patient management is characterized by a substantial therapeutic burden and HRU, translating into high direct costs and a substantial impairment of the adults’ physical function and children’s school functioning.

Keywords: Chronic intestinal failure, Cost of illness analysis, Healthcare resource utilization, Parenteral nutrition, Quality of life, Short-bowel syndrome