Evaluating the quality of life of adult patients on home parenteral nutrition in North East England and Cumbria

Hu, Meiyan; Gemmell, Lisa; Cook, Harold J.; Leyland, H.; Leeds, John S.; Mansour, Diana; Thompson, Nick; Mountford, C

doi:10.1016/j.clnesp.2017.07.006

Cited by 3 publications

(4 citation statements)

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“…Furthermore, the differences observed may have been related to hypofunction of the residual intestine in Crohn's disease or the high volume of intestinal fluid drainage associated with stoma construction. Although mesenteric ischemia is a frequent cause of SBS [23][24][25], in the current studies in Japanese patients, Crohn's disease was the most common cause of SBS. In Crohn's disease, the small bowel function can be impaired even when the length is not affected, due to reasons such as inflammation of stricture in the intestines [26,27].…”

Section: Discussionmentioning

confidence: 53%

Efficacy, safety, and pharmacokinetics of teduglutide in adult Japanese patients with short bowel syndrome and intestinal failure: two phase III studies with an extension

et al. 2022

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Purpose The short- and long-term efficacy, safety, and pharmacokinetics of teduglutide were analyzed in adult Japanese patients with short bowel syndrome and intestinal failure (SBS-IF). Methods Patients received teduglutide 0.05 mg/kg/day in clinical trials (TED-C14-004, SHP633-306, and extension SHP633-307). Data were analyzed at 24 weeks and an interim data cut-off of 4.5 years. Results The parenteral support (PS) volume decreased by ≥ 20% for 9/18 patients at 24 weeks and in all 11 patients by data cut-off in SHP633-307. The mean (standard deviation) PS volume decreased from baseline at 24 weeks in TED-C14-004 (−30.1 ± 25.9%) and SHP633-306 (−25.6 ± 25.5%), and at data cut-off in SHP633-307 (−57.08 ± 28.49%). Teduglutide was absorbed quickly. The adverse events were consistent with the underlying disease and known adverse drug reactions. Anti-teduglutide antibody titers declined with long-term treatment. Conclusions In Japanese adults with SBS-IF, teduglutide treatment was associated with clinically meaningful reductions in PS requirements, similar to findings in prior international studies. No new safety concerns specific to the Japanese SBS-IF patient population were identified with short- or long-term teduglutide treatment. Anti-teduglutide antibody titers disappeared in most Japanese adults with long-term treatment. These results constitute the longest evaluation of teduglutide treatment within clinical trials reported to date.

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Section: Discussionmentioning

confidence: 53%

Efficacy, safety, and pharmacokinetics of teduglutide in adult Japanese patients with short bowel syndrome and intestinal failure: two phase III studies with an extension

et al. 2022

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“…These reported difficulties associated with PS have also been recognized in previous studies 35–37 . It has also previously been acknowledged that reducing the number of nights or hours necessary for patients to receive PS can have a positive impact on their HRQoL 10,16,38 …”

Section: Discussionmentioning

confidence: 60%

“…[35][36][37] It has also previously been acknowledged that reducing the number of nights or hours necessary for patients to receive PS can have a positive impact on their HRQoL. 10,16,38 The physical and social burdens experienced by patients with Overall, patients with SBS-IF receiving PS reported better scores than the reference general population for general health and GI symptom subscales. This could be due to their symptoms and other impacts being less severe and more manageable than they were before treatment with PS.…”

Section: Discussionmentioning

confidence: 99%

Impact of intestinal failure and parenteral support on adult patients with short‐bowel syndrome: A multinational, noninterventional, cross‐sectional survey

Jeppesen

Shahraz

Hopkins

et al. 2022

J Parenter Enteral Nutr

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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.

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“…Therefore, the remaining sample size is 275. Based on a previous study at NuTH that evaluated the QoL of adult patients on HPN at a single time point, 19 initial uptake is expected to be at least 80% (n=220).…”

Section: Methodsmentioning

confidence: 99%

Factors that impact on the quality of life of intestinal failure patients treated with home parenteral nutrition: protocol for a multicentre, longitudinal observational study

Kirk,

Mathers,

Pearce

et al. 2024

BMJ Open

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BackgroundHome parenteral nutrition (HPN) refers to the intravenous administration of macronutrients, micronutrients and fluid. The aims of treatment are to increase survival and improve quality of life (QoL). However, patients struggle with physiological symptoms, time-consuming invasive therapy and an increased occurrence of depression and social isolation. Our aim is to understand how HPN impacts the QoL of patients, and the contribution played by the complications of treatment, for example, liver disease.Methods and analysisA multicentre, longitudinal, observational study will be conducted using routinely collected clinical data. Participants will also be asked to complete three QoL questionnaires (EuroQol-5 Dimensions, Short Form 36 and HPN-QoL) at baseline and 12 months. The primary outcome is mean change in QoL scores over 12 months. Secondary outcomes include how factors including liver function, gut microbiota, number of infusions of PN per week, nutritional composition of PN and nutritional status impact on QoL scores.Ethics and disseminationEthical approval was obtained from HRA and Health and Care Research Wales Research Ethics Committee (21/SC/0316). The study was eligible for portfolio adoption, Central Portfolio Management System ID 50506. Results will be disseminated through peer-reviewed scientific journals and presented at national and international meetings.

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Evaluating the quality of life of adult patients on home parenteral nutrition in North East England and Cumbria

Abstract: This meeting is approved for 12 credits under the Continuing Medical Education (CME) Scheme by all Medical Royal Colleges.

Cited by 3 publications

References 0 publications

Efficacy, safety, and pharmacokinetics of teduglutide in adult Japanese patients with short bowel syndrome and intestinal failure: two phase III studies with an extension

Efficacy, safety, and pharmacokinetics of teduglutide in adult Japanese patients with short bowel syndrome and intestinal failure: two phase III studies with an extension

Impact of intestinal failure and parenteral support on adult patients with short‐bowel syndrome: A multinational, noninterventional, cross‐sectional survey

Factors that impact on the quality of life of intestinal failure patients treated with home parenteral nutrition: protocol for a multicentre, longitudinal observational study

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