ArticleGE Portuguese journal of gastroenterology2023
Clinical, Economic, and Humanistic Impact of Short-Bowel Syndrome/Chronic Intestinal Failure in Portugal (PARENTERAL Study).
Article in GE Portuguese journal of gastroenterology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 14 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- Health-related quality of life in pediatric patients with intestinal failure without neurodevelopmental delay: a systematic review and meta-analysis.BMC gastroenterology · 2025Pooled it
- Quality of life and healthcare resource utilization among adult patients with short bowel syndrome: A mixed-methods study leveraging an integrated database.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2026Article
- Quality of life of children with short bowel syndrome and their caregivers from the perspective of caregivers: a cross-sectional study in China.European journal of pediatrics · 2026Article
- Development of a novel tubular scaffold for tissue-engineered small intestine.Journal of pediatric surgery · 2026Article
- Chronic Intestinal Failure and Short Bowel Syndrome in Adults: Principles and Perspectives for the Portuguese Health System.GE Portuguese journal of gastroenterology · 2025Review
- Chronic Intestinal Failure and Short Bowel Syndrome in Adults: The State of the Art.GE Portuguese journal of gastroenterology · 2024Review
- Home Parenteral Support in Chronic Intestinal Failure-First Results from a Pioneer Portuguese Intestinal Failure Center.Nutrients · 2024Article
- Management of Short Bowel Syndrome With Chronic Intestinal Failure: A Single-Center Experience in Portugal.Cureus · 2024Article
- The Anxiety Burden in Patients with Chronic Intestinal Failure on Long-Term Parenteral Nutrition and in Their Caregivers.Nutrients · 2024Article
- A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field.European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie · 2024Review
- A multicentric observational retrospective study on patients with short bowel syndrome and chronic intestinal failure who underwent intestinal transplantation in Brazil.Clinics (Sao Paulo, Brazil) · 2024Observational
- A Systematic Review of Quality of Life in Patients with Short Bowel Syndrome and Their Caregivers.Patient preference and adherence · 2024Review
- Quality of life in pediatric intestinal failure: A scoping review.Intestinal Failure (New York, N.Y.)Review
- Chronic Intestinal Failure: Portuguese Overview and Future Perspectives.GE Portuguese journal of gastroenterologyReview
Corrections and comments
- Erratum issuedErratum.2023
Authors and funding
12 authors at 6 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Introduction: This study aimed to assess the clinical, economic, 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/PedsQL™ 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.
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