Attitudes and expectations of patients on home parenteral nutrition towards eHealth: A multicenter survey

Schönenberger, Katja A.; Reber, Emilie; Vu, Duy-Tan; Krieger-Grübel, Claudia; Gerber, Philipp A.; Muri, Raphaela; Huwiler, Valentina V.; Mühlebach, Stefan; Leuenberger, M.; Stanga, Zeno

doi:10.1016/j.clnesp.2022.09.026

Cited by 5 publications

(2 citation statements)

References 18 publications

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“…We have recently started using custom bags to reduce the complications of NPD. Whenever indicated to reduce the volume/number of PNH bags per week (21), Teduglutide is an important aid in managing these patients (22). In addition to reducing the number of bags, it reduces the long-term complications of PNH and significantly improves the patient's quality of life (23,24).…”

Section: Discussionmentioning

confidence: 99%

Management of Short Bowel Syndrome/Chronic Intestinal Failure – the Experience of a Single Portuguese Center

Santos,

Magalhães,

Loureiro

et al. 2024

Preprint

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Aim: To analyze a single center's experience with Short Bowel Syndrome/ Chronic Intestinal Failure (SBS/CIF) in adult patients treated with Home Parenteral Nutrition (HPN). Materials and methods: In the last thirty years, 13 patients with SBS/CIF were included in an HPN program. Results: Between 1992 and 2023, 13 patients were included in an HPN program. The primary underlying pathology was acute mesenteric ischemia. The median age of the starting HPN was 44 years old. Most are submitted to several surgeries of extensive intestinal resection with posterior intestinal reconstruction. Five of the 13 patients have died while on HPN for a median of 42 months. The causes of death HPN-related were catheter sepsis, endocarditis with cardiac failure, or hepatic failure. One patient died due to underlying pathology: pelvic abscesses and bleeding related to radiotherapy. Eight patients remain alive with a median time of HPN of 173 months. During the HPN support, the most frequent complications were venous catheter infection and venous territory thrombosis. None of the eight patients alive have hepatic failure. Two patients recently started teduglutide, with good tolerance, and need reduction of HPN support. All these eight patients have a satisfactory quality of life (parenteral support needs range between five to two nutrition bags per week). Conclusion: HPN remains the gold standard of SBS/CIF treatment, although Teduglutide may reduce HPN needs and HPN complications and provide a better quality of life. An HPN multidisciplinary healthcare group support is essential to ensure these patients' survival and quality of life. Keywords Short bowel Syndrome, Chronic Intestinal failure, Home Parenteral Nutrition, Teduglutide, Complications of Parenteral Support.

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Section: Discussionmentioning

confidence: 99%

Management of Short Bowel Syndrome/Chronic Intestinal Failure – the Experience of a Single Portuguese Center

Santos,

Magalhães,

Loureiro

et al. 2024

Preprint

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“…Although the latest data show that only 26% of HPN patients in Switzerland are interested in connecting with other patients [31] , participants in the SWISSHPN II study often reported feeling alone in their situation and that they would like to meet other patients and have a network to talk and exchange information about their situation. HPN patient groups, which are also recommended by ESPEN but currently not systematically established in Switzerland, can empower patients by sharing experiences with others [32] .…”

Section: Discussionmentioning

confidence: 99%

Quality of Life in the Management of Home Parenteral Nutrition

Schönenberger¹,

Reber²,

Huwiler³

et al. 2023

Ann Nutr Metab

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Introduction: Home parenteral nutrition (HPN) is a rare but challenging therapy and care for patients with mostly severe underlying diseases. We aimed to investigate patient-reported health-related quality of life (QOL) of patients receiving HPN and its development over time in particular. Methods: We assessed QOL of HPN patients in a prospective multicenter observational study (SWISSHPN II study). We designed a questionnaire to record symptoms and negative impacts of HPN and completed the validated Optum® SF-36v2® Health Survey with the patients. Results: 70 patients (50% women) on HPN were included. PN commonly affected feelings of dependency (n = 49, 70%), traveling/leaving home (n = 37, 53%), attending cultural and social events (n = 25, 36%), and sleep (n = 22, 31%). Most frequently reported symptoms were diarrhea (n = 30, 43%), polyuria (n = 28, 40%), nausea/emesis (n = 27, 39%), dysgeusia (n = 23, 33%), and cramps (n = 20, 29%). At baseline, mean (SD) SF-36v2® physical and mental health component summary scores (PCS and MCS) were 45 (20) and 57 (19), respectively, and there was a trend towards improvement in PCS over the study period while MCS remained stable. Satisfaction with health care professionals involved in HPN care was high. Conclusion: QOL is a crucial and decisive aspect of HPN patient care. Symptoms related to the underlying disease and PN are frequent. Impaired social life and an ambivalent attitude towards the life-saving therapy are major concerns for these patients and should be addressed in their care.

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