2022
DOI: 10.1002/jpen.2372
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Abstract: Background Patients with short‐bowel syndrome and intestinal failure (SBS‐IF) require parenteral support (PS) and experience various symptoms and comorbidities. This survey assessed the impact of SBS‐IF and PS on patients and their health‐related quality of life (HRQoL). Methods An online survey of adult patients who had a self‐reported clinician diagnosis of SBS‐IF and were receiving PS was conducted in France, Germany, Italy, the UK, and the USA. Patients reported symptoms, comorbidities, and treatment satis… Show more

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Cited by 10 publications
(7 citation statements)
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“…The condition makes it difficult to work full-time and causes economic concerns. SBS also limits the ability to participate in social and leisure activities due to dependence on HPN and need for a high standard of sanitary facilities (28,29). Psychosocial problems as the main complaints in daily life is experienced by both individuals dependent on HPN as well as patients with SBS.…”
Section: Living With An Enterocutaneous Fistulamentioning
confidence: 99%
“…The condition makes it difficult to work full-time and causes economic concerns. SBS also limits the ability to participate in social and leisure activities due to dependence on HPN and need for a high standard of sanitary facilities (28,29). Psychosocial problems as the main complaints in daily life is experienced by both individuals dependent on HPN as well as patients with SBS.…”
Section: Living With An Enterocutaneous Fistulamentioning
confidence: 99%
“…It remains largely unknown when patients receiving home nutrition support precisely administer home parenteral nutrition (HPN) and/or home enteral nutrition (HEN). It is generally considered standard practice for patients receiving home nutrition support to administer infusions for approximately 9–12 h overnight, coinciding with nighttime sleep 12–15 . Indeed, in a multicentered European survey study including 1397 patients supported with HEN, the distribution of modes of administration was 36.7% for cyclical nocturnal, 24.8% for cyclical diurnal, 4.4% for 24‐h continuous, and 34.1% for bolus 16 .…”
Section: Introductionmentioning
confidence: 99%
“…It is generally considered standard practice for patients receiving home nutrition support to administer infusions for approximately 9-12 h overnight, coinciding with nighttime sleep. [12][13][14][15] Indeed, in a multicentered European survey study including 1397 patients supported with HEN, the distribution of modes of administration was 36.7% for cyclical nocturnal, 24.8% for cyclical diurnal, 4.4% for 24-h continuous, and 34.1% for bolus. 16 An international survey study of 181 adult patients with short bowel syndrome and intestinal failure reported that 72.9% of respondents received HPN at night and that patients often reported sleep issues.…”
Section: Introductionmentioning
confidence: 99%
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