An international study of the quality of life of adult patients treated with home parenteral nutrition

Baxter, J.; Fayers, Peter; Bozzetti, Federico; Kelly, Darlene; Joly, Francisca; Wanten, Geert; Jonkers, C.; Cuerda, C.; Gossum, A. Van; Kłęk, Stanisław; Boudreault, Marie-France; Gilbert, Alain; Jobin, Manon; Staun, Michael; Gillanders, Lyn; Forbes, Alastair; O’Callaghan, Margie; Faedo, Ceferino Martínez; Brunelli, Cinzia; Mariani, Luigi; Pironi, Loris

doi:10.1016/j.clnu.2018.07.024

Cited by 57 publications

(93 citation statements)

References 26 publications

(36 reference statements)

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“…Recently introduced SBS-QoL and HPN-QoL have been identified as reliable disease-specific questionnaires for QoL assessment in IF patients. 27,28 Both specifically measure the effects of the underlying illness and HPN on QoL. However, these surveys enable no comparison of disease burden, and a lack of data prevents clear recommendations of clinical implementation to date.…”

Section: Discussionmentioning

confidence: 99%

“…As of yet, limited availability reduces a wide application in routine clinical practice. 26,28 Furthermore, most questionnaires yield sum scores of QoL and thus give no detailed information of the underlying cause of the reduced QoL. Since Ablett et al have shown that 56% of IF patients were suffering from anxiety and/or depression, identification of this particularly vulnerable group of patients with a general questionnaire can be of interest.…”

Section: Discussionmentioning

confidence: 99%

“…Thus, our identified variables warrant further research and also have to be validated using a study with longitudinal design to assess the effects of therapeutic interventions on specific QoL parameters. 13,28 Finally, another limitation is related to the non-disease-specific nature of the SF-36 questionnaire. Future work will compare our results with a disease-specific questionnaire, and a longitudinal study is being planned to overcome these limitations.…”

Section: Discussionmentioning

confidence: 99%

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Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Blüthner

Bednarsch

Stockmann

et al. 2019

J Parenter Enteral Nutr

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Background Parenteral nutrition (PN) is a life‐sustaining therapy for patients with chronic intestinal failure (IF) but inevitably has an impact on patients’ quality of life (QoL). The purpose of this study was to examine multiple aspects of QoL by utilizing the standardized Short Form 36 (SF‐36) health survey. Methods Between 2014 and 2017, a total of 90 adult patients with IF who were receiving PN were prospectively enrolled in an observational study. All subjects underwent nutrition status assessment, liver assessment, blood tests, and QoL assessment based on the SF‐36. Univariate and multivariable analyses were performed to identify determinants of 8 domains and 2 summary scales of the SF‐36. Results Analysis of the SF‐36 questionnaire data showed that QoL was significantly worse compared with the general German population across all categories. Multivariable analysis revealed that bioelectrical impedance analysis of phase angle (1/10 categories), stoma/fistula (4/10 categories), oral intake (4/10 categories), infusions per week (1/10 categories), duration of PN (1/10 categories), citrulline (4/10 categories), and hemoglobin levels (1/10 categories) are independent risk factors affecting QoL. Conclusion This study uses the largest cohort of IF patients assessed by the standardized SF‐36 questionnaire to comprehensively analyze QoL. Presence of oral intake, presence of ostomy, and citrulline levels were independently correlated with 4 of 10 categories of the SF‐36. These results indicate that to improve QoL for IF patients, clinical care should focus on addressing the social and emotional value of oral intake, educational interventions, early stoma closure, and application of new targeted therapies.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Blüthner

Bednarsch

Stockmann

et al. 2019

J Parenter Enteral Nutr

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“…IF is one of the rarest forms of organ failure and a complex medical condition that requires multidisciplinary management and long-term PN support. 3,6,26 PN is critical in numerous patients with IF or relative contraindications to EN. 18,23 Although the incidence of infectious complications associated with PN has decreased because of improvements in medical care, NIs remain the most common complication to occur during hospitalization, especially in patients requiring PN over a period of weeks or months.…”

Section: Discussionmentioning

confidence: 99%

“…4,5 However, IF and its management, especially PN, may be associated with increased risk of life-threatening complications and impairment of patients' quality of life. 6,7 Previous studies have demonstrated that early use of PN is associated with increased nosocomial infections (NIs) in both patients in the pediatric cardiac intensive care unit (ICU) and adults in the surgical ICU. 8,9 Pneumonia, catheter-related bloodstream infection (CRBSIs), and bacteremia are the most common types of NIs in hospitalized patients, especially in patients admitted to the ICU.…”

Section: Introductionmentioning

confidence: 99%

Prolonged Parenteral Nutrition Is One of the Most Significant Risk Factors for Nosocomial Infections in Adult Patients With Intestinal Failure

et al. 2020

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Background Intestinal failure (IF) and its management are associated with an increased likelihood of infectious complications. This study aimed to evaluate the prevalence and potential risk factors for nosocomial infections (NIs) in hospitalized adult patients with IF. Methods In total, 259 eligible patients with IF admitted to a single clinical nutrition center in a tertiary referral hospital from January 1, 2012, to January 1, 2019, were retrospectively identified. NIs were defined according to the 2008 Centers for Disease Control and Prevention criteria. Univariate and multivariate analyses were performed to identify independent risk factors for NIs. Results The mean age of the study population was 47.0 ± 17.7 years, and 158 (61.0%) were men. The mean body mass index was 16.2 ± 2.9 kg/m2, and 219 (84.6%) were diagnosed with malnutrition. The prevalence of NIs was 25.5% (113 NIs in 66 patients). The most common NIs were pneumonia (14.3%), bacteremia of unknown origin (13.5%), catheter‐related bloodstream infection (5.0%), lower respiratory tract infection (5.0%), surgical site infection (3.9%), and urinary tract infection (1.9%). Multivariate analysis revealed that decreased serum albumin level (odds ratio [OR], 0.884; 95% CI, 0.883–0.978, P < .05), presence of gallbladder stones or cholestasis (OR, 3.144; 95% CI, 1.044–9.464; P < .05), and prolonged parenteral nutrition (PN) use (OR, 1.072; 95% CI, 1.039–1.105; P < .001) were independent predictors for NIs. Conclusions NIs remain prevalent in hospitalized adult patients with IF. Prolonged PN use was one of the most significant predictors for NIs.

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Translation of Evidence Into Practice With Teduglutide in the Management of Adults With Intestinal Failure due to Short‐Bowel Syndrome: A Review of Recent Literature

Pironi

2019

J Parenter Enteral Nutr

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Chronic intestinal failure (CIF) due to short‐bowel syndrome (SBS) is characterized by failure to achieve optimal intestinal adaptation required to maintain oral/enteral autonomy. The conventional management strategy relies heavily on home parenteral support (PS; parenteral nutrition and/or intravenous fluids). Teduglutide, an analog of the hormone glucagon‐like peptide‐2, facilitates intestinal adaptation, as evidenced by reductions in PS volume in patients with SBS‐associated CIF. In 2016, the European Society for Clinical Nutrition and Metabolism (ESPEN) developed guidelines for the management of adult patients with CIF, consisting of a comprehensive list of recommendations. Owing to the limited number of studies at the time of the finalization of the GRADE‐method review of the available literature, teduglutide received a moderate grade of evidence (GOE) as the first choice for growth‐factor treatment in patients with SBS‐CIF. The GOE was also low for 7 points of recommended information to be discussed with the candidate patients. This review summarizes findings from recent studies that fill some gaps identified in the 2016 ESPEN guidelines regarding the use of teduglutide in the management of SBS‐CIF. Collectively, these studies provide useful information about the probability and timing of clinical response in the individual patient. Also, recent studies report longer‐term safety findings with teduglutide. These results can help physicians better manage patients with SBS‐CIF by aligning clinical decision making with specific disease characteristics, setting the right expectations, and encouraging treatment adherence.

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An international study of the quality of life of adult patients treated with home parenteral nutrition

Abstract: The HPN-QOL, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research.

Cited by 57 publications

References 26 publications

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Prolonged Parenteral Nutrition Is One of the Most Significant Risk Factors for Nosocomial Infections in Adult Patients With Intestinal Failure

Translation of Evidence Into Practice With Teduglutide in the Management of Adults With Intestinal Failure due to Short‐Bowel Syndrome: A Review of Recent Literature

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