Schönenberger, Katja A; Reber, Emilie; Huwiler, Valentina V; Dürig, Christa; Muri, Raphaela; Leuenberger, Michèle; Mühlebach, Stefan; Stanga, Zeno (2023). Quality of Life in the Management of Home Parenteral Nutrition. Annals of nutrition & metabolism, 79(3), pp. 326-333. Karger 10.1159/000530082
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INTRODUCTION
Home parenteral nutrition (HPN) is a rare but challenging therapy 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
Seventy patients (50% women) on HPN were included. HPN 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 (standard deviation) SF-36v2® physical and mental health component summary scores (PCS and MCS) were 45 (20) and 57 (19), respectively, and there was a trend toward 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 toward the life-saving therapy are major concerns for these patients and should be addressed in their care.
Item Type: |
Journal Article (Original Article) |
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Division/Institute: |
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Endocrinology, Diabetology and Clinical Nutrition 04 Faculty of Medicine > Department of Gastro-intestinal, Liver and Lung Disorders (DMLL) > Clinic of Visceral Surgery and Medicine |
UniBE Contributor: |
Reber, Emilie, Dürig, Christa, Muri, Raphaela, Leuenberger, Michèle Simone, Stanga, Zeno |
Subjects: |
600 Technology > 610 Medicine & health |
ISSN: |
1421-9697 |
Publisher: |
Karger |
Language: |
English |
Submitter: |
Rahel Fuhrer |
Date Deposited: |
03 Jan 2024 12:00 |
Last Modified: |
03 Jan 2024 12:00 |
Publisher DOI: |
10.1159/000530082 |
PubMed ID: |
36934718 |
Uncontrolled Keywords: |
Home parenteral nutrition Parenteral nutrition Patient-reported outcomes Quality of life SF-36v2 |
BORIS DOI: |
10.48350/191056 |
URI: |
https://boris.unibe.ch/id/eprint/191056 |
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