Publication
Clinical, Economic, and Humanistic Impact of Short-Bowel Syndrome/Chronic Intestinal Failure in Portugal (PARENTERAL Study)
| dc.contributor.author | Silva, R | |
| dc.contributor.author | Guerra, P | |
| dc.contributor.author | Rocha, A | |
| dc.contributor.author | Correia, M | |
| dc.contributor.author | Ferreira, R | |
| dc.contributor.author | Fonseca, J | |
| dc.contributor.author | Lima, E | |
| dc.contributor.author | Oliveira, A | |
| dc.contributor.author | Vargas Gomes, M | |
| dc.contributor.author | Ramos, D | |
| dc.contributor.author | Andreozzi, V | |
| dc.contributor.author | Santos, MD | |
| dc.date.accessioned | 2024-03-20T13:04:38Z | |
| dc.date.available | 2024-03-20T13:04:38Z | |
| dc.date.issued | 2023 | |
| dc.description.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. | pt_PT |
| dc.description.version | info:eu-repo/semantics/publishedVersion | pt_PT |
| dc.identifier.citation | GE Port J Gastroenterol . 2022 Sep 8;30(4):293-304 | pt_PT |
| dc.identifier.doi | 10.1159/000526059 | pt_PT |
| dc.identifier.uri | http://hdl.handle.net/10400.17/4857 | |
| dc.language.iso | eng | pt_PT |
| dc.peerreviewed | yes | pt_PT |
| dc.publisher | Karger Publishers | pt_PT |
| dc.subject | Intestinal Failure | pt_PT |
| dc.subject | Cost of Illness | pt_PT |
| dc.subject | Parenteral Nutrition | pt_PT |
| dc.subject | Crew Resource Management, Healthcare | pt_PT |
| dc.subject | Quality of Life | pt_PT |
| dc.subject | Short Bowel Syndrome | pt_PT |
| dc.subject | HDE PED | pt_PT |
| dc.title | Clinical, Economic, and Humanistic Impact of Short-Bowel Syndrome/Chronic Intestinal Failure in Portugal (PARENTERAL Study) | pt_PT |
| dc.type | journal article | |
| dspace.entity.type | Publication | |
| oaire.citation.endPage | 304 | pt_PT |
| oaire.citation.issue | 4 | pt_PT |
| oaire.citation.startPage | 293 | pt_PT |
| oaire.citation.title | GE - Portuguese Journal of Gastroenterology | pt_PT |
| oaire.citation.volume | 30 | pt_PT |
| rcaap.rights | openAccess | pt_PT |
| rcaap.type | article | pt_PT |