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Impact of intestinal failure and parenteral support on adult patients with short‐bowel syndrome: A multinational, noninterventional, cross‐sectional survey
Author(s) -
Jeppesen Palle B.,
Shahraz Saeid,
Hopkins Thomas,
Worsfold Andrew,
Genestin Elisabeth
Publication year - 2022
Publication title -
journal of parenteral and enteral nutrition
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.935
H-Index - 98
eISSN - 1941-2444
pISSN - 0148-6071
DOI - 10.1002/jpen.2372
Subject(s) - medicine , interquartile range , short bowel syndrome , quality of life (healthcare) , parenteral nutrition , intestinal failure , cross sectional study , pediatrics , physical therapy , nursing , pathology
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 satisfaction; the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP) and the Home Parenteral Nutrition‐Quality of Life (HPN‐QoL) questionnaire assessed impact on work and HRQoL, respectively. Results Patients ( N = 181; aged 52.0 ± 15.1 years; 56.9% women) experienced fatigue (75.1%), anemia (49.7%), and difficulty spending time with family (36.5%) and friends (30.4%). A total work productivity loss of 37.5% was calculated in patients reporting employment (29.3%). Patients typically (64.0%) reported some degree of satisfaction with their PS treatment. Almost two‐thirds (59.7%) reported that their PS was either “not,” “a little,” or “moderately” convenient. The mean HPN‐QoL scores were higher for patients who were satisfied with treatment ( n = 116; 17.1 ± 21.0 [median, 16.7; interquartile range, 0.0–31.7]) than for patients who were dissatisfied/neither ( n = 65; 1.7 ± 19.7 [median, 0.0; interquartile range, –13.3–13.3]). Conclusions Patients with SBS‐IF who are receiving PS experience burdensome symptoms and comorbidities and report impacts on work productivity and time spent with friends and family. This study can increase awareness of the impacts of SBS‐IF and PS and how treatment satisfaction may influence patients’ health and HRQoL.