Clinical, Economic, and Humanistic Impact of Short-Bowel Syndrome/Chronic Intestinal Failure in Portugal (PARENTERAL Study)

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