First registry of adult patients with chronic intestinal failure due to short bowel syndrome in Argentina: The RESTORE project

Gondolesi, Gabriel; Ortega, Mariana; Doeyo, Mariana; Buncuga, Martín; Pérez, Carolina Alejandra; Mauriño, Eduardo; Costa, F.; Barrio, Silvia de; Manzur, Alejandra; Donnadio, Luciana; Matoso, Dolores; Clariá, Rodrigo Sanchez; Crivelli, Adriana; Solar, Héctor

doi:10.1002/jpen.2387

Cited by 7 publications

(1 citation statement)

References 42 publications

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“…This information is invaluable for healthcare professionals and policy-makers as well as researchers. Although many other countries have already established their registries [4][5][6][7][8], there is still a noticeable lack of published data.…”

Section: Introductionmentioning

confidence: 99%

The Czech Home Parenteral Nutrition Registry REDNUP: Comprehensive Analysis of Adult Patients’ Data

Koudelková,

Waldauf,

Wohl

et al. 2024

Ann Nutr Metab

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Introduction: Home parenteral nutrition (HPN) is the primary treatment modality for patients with chronic intestinal failure, one of the least common organ failures. This article provides a retrospective analysis of the data collected on HPN patients in the Czech Republic over the past 30 years. Methods: National registry data was collected using a standardised online form based on the OASIS registry (Oley–A.S.P.E.N. Information System) across all centres providing HPN in the Czech Republic. Data collected prospectively from adult patients in the HPN program was analysed in the following categories: epidemiology, demographics, underlying syndrome, and diagnosis, complications, and teduglutide therapy prevalence. Results: The registry identified a total of 1,838 adult patient records, reflecting almost 1.5 million individual catheter days. The prevalence of HPN has risen considerably over the last few decades, currently reaching 5.5 per 100,000 population. The majority of patients have short bowel syndrome and GI obstruction, with cancer being the most prevalent underlying disease. Catheter-related bloodstream infections have been the most prevalent acute complication. However, the incidence in 2022 was only 0.15 per 1,000 catheter days. The study also observed an increase in the prevalence of patients on palliative HPN over the last decade. Conclusion: This study presents a thorough analysis of data from the Czech REDNUP registry. It shows an increasing prevalence of HPN, namely in the palliative patient group. The sharing of national data can improve understanding of this rare condition and facilitate the development of international guidelines.

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Section: Introductionmentioning

confidence: 99%

The Czech Home Parenteral Nutrition Registry REDNUP: Comprehensive Analysis of Adult Patients’ Data

Koudelková,

Waldauf,

Wohl

et al. 2024

Ann Nutr Metab

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Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome

Winkler

Tappenden

2023

Nut in Clin Prac

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Short bowel syndrome (SBS) is a rare disorder with known physical, psychosocial, and economic burdens and significant morbidity and mortality. Many individuals with SBS require long-term home parenteral nutrition (HPN). The incidence and prevalence of SBS is difficult to determine because it is often based on HPN usage and may not account for those who receive intravenous fluids or achieve enteral autonomy. The most common etiologies associated with SBS are Crohn's disease and mesenteric ischemia. Intestinal anatomy and remnant bowel length are prognostic for HPN dependency, and enteral autonomy confers a survival advantage. Health economic data confirm that PN-related costs are higher for hospitalizations than at home; yet significant healthcare resource utilization is necessary for successful HPN, and patients and families report substantial financial distress that impacts quality of life (QOL). An important advancement in QOL measurement is the validation of HPN-and SBS-specific QOL questionnaires. In addition to the known factors negatively impacting QOL, such as diarrhea, pain, nocturia, fatigue, depression, and narcotic dependency, research has shown that the volume and number of PN infusions per week is associated with QOL.Although traditional QOL measurements describe how underlying disease and therapy influence life, they do not assess how symptoms and functional limitations affect the QOL of patients and caregivers. Patient-centered measures and conversation focused on psychosocial issues helps patients with SBS and HPN dependency better cope with their disease and treatment. This article presents a brief overview of SBS, including epidemiology, survival, costs, and QOL.

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Current management of bowel failure due to Crohn's disease in Spain: Results of the GETECCU survey

Ferrer

Martín-Arranz

et al. 2023

Gastroenterología y Hepatología (English Edition)

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First registry of adult patients with chronic intestinal failure due to short bowel syndrome in Argentina: The RESTORE project

Cited by 7 publications

References 42 publications

The Czech Home Parenteral Nutrition Registry REDNUP: Comprehensive Analysis of Adult Patients’ Data

The Czech Home Parenteral Nutrition Registry REDNUP: Comprehensive Analysis of Adult Patients’ Data

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome

Current management of bowel failure due to Crohn's disease in Spain: Results of the GETECCU survey

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