Intestinal failure in Finland: prevalence and characteristics of an adult patient population

Pohju, Anne; Pakarinen, Mikko P.; Sipponen, Taina

doi:10.1097/meg.0000000000002082

Cited by 6 publications

(6 citation statements)

References 26 publications

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“…The prevalence of CIF is increasing from 0.7 to 13 cases per million population to 6 to 40 cases per million population over the past two decades. 9,13 Additionally, the overall prevalence of SBS, the leading cause of CIF, has been increasing from 0.3 to 12 cases per million population in 1994 14 to 3 to 66 cases per million population in 2010. 15 However, there is a large variation between the size of IF centers, ranging between 30 and 380 patients.…”

Section: Discussionmentioning

confidence: 99%

“…The large numbers of patients with CIF in these centers may result from the maturity of the program with improvement of overall survival as well as the increasing incidence and prevalence of CIF in the western world. The prevalence of CIF is increasing from 0.7 to 13 cases per million population to 6 to 40 cases per million population over the past two decades 9,13 . Additionally, the overall prevalence of SBS, the leading cause of CIF, has been increasing from 0.3 to 12 cases per million population in 1994 14 to 3 to 66 cases per million population in 2010 15 .…”

Section: Discussionmentioning

confidence: 99%

“…Data regarding this aspect of CIF are scarce, and previous studies usually reported only patients' characteristics. 9,10 These data are potentially of value in informing the development of new IF centers and refining existing programs. To explore CIF care in real-world practice, we conducted an international survey to reveal characteristics of IF centers and patients with CIF participating in the international phase 3 clinical trial of glepaglutide in patients with SBS IF.…”

Section: Introductionmentioning

confidence: 99%

“…To date, despite the development of IF centers across the globe, characteristics of adult IF centers have not previously been described. Data regarding this aspect of CIF are scarce, and previous studies usually reported only patients’ characteristics 9,10 . These data are potentially of value in informing the development of new IF centers and refining existing programs.…”

Section: Introductionmentioning

confidence: 99%

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Characteristics of adult intestinal failure centers: An international multicenter survey

et al. 2022

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Background: Current guidelines recommend that patients with chronic intestinal failure (CIF) should be managed by a multidisciplinary team (MDT). However, the characteristics of real-world IF centers and the patients they care for are lacking. The study aims to describe IF center characteristics as well as characteristics of patients with CIF across different global regions.Methods: This is an international multicenter study of adult IF centers using a survey. The questionnaire survey included questions regarding program and patient characteristics. Thirty-three investigational centers were invited to participate. Each center was asked to answer the survey questions as one MDT. Results: The survey center response rate was 91%. The median number of patients with CIF per center was 128 (range, 30-380). The most common disciplines reported were gastroenterologist (93%), dietitian (90%), nurse (83%), and advanced practitioner (nurse practitioner and physician assistant, 77%).

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Characteristics of adult intestinal failure centers: An international multicenter survey

et al. 2022

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“…However, further progress in clinical and translational research is limited by the rarity of pediatric IF. In Europe, estimates of disease prevalence reveal rates ranging from 3.2 to 66 individuals (children and adults) on HPN per million population, 5 6 7 whereas in the United States, the figure is approximately 79 individuals (children and adults) on HPN per million population. 8 …”

Section: Introductionmentioning

confidence: 99%

The Development of the International Intestinal Failure Registry and an Overview of its Results

Avitzur,

Pahl,

Venick

2023

Eur J Pediatr Surg

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Pediatric intestinal failure (IF) is a rare disease that represents an evolving field in pediatric gastroenterology and surgery. With only a limited number of multicenter collaborations, much of the research in pediatric IF is often confined to single-center reports with small sample sizes. This has resulted in challenges in data interpretation and left many knowledge gaps unanswered. Over the past two decades, five large multicenter collaborations, primarily from North America and Europe, have published their findings. Apart from one ongoing European adult and pediatric registry, these relatively large-scale efforts have been concluded. In 2018, the International Intestinal Failure Registry (IIFR) was initiated by the International Intestine Rehabilitation and Transplant Association (IIRTA) to continue these efforts and answer some of the knowledge gaps in pediatric IF. The IIFR goals are to prospectively assess the natural history of children diagnosed with IF and creating a worldwide platform to facilitate benchmarking and evidence-based interventions in pediatric IF. A pilot phase involving 204 enrolled patients was initiated in 2018 to assess the feasibility of an international IF registry and refine the study protocol and data collection forms. Following the successful completion of this phase, the current phase of the IIFR was launched in 2021. As of May 2023, the registry includes 362 prospectively followed children from 26 centers worldwide. This review provides an overview of the development, structure, and challenges of the IIFR, as well as the main findings from both the pilot and current phases.

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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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Intestinal failure in Finland: prevalence and characteristics of an adult patient population

Cited by 6 publications

References 26 publications

Characteristics of adult intestinal failure centers: An international multicenter survey

Characteristics of adult intestinal failure centers: An international multicenter survey

The Development of the International Intestinal Failure Registry and an Overview of its Results

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

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