The SF-36 instrument for the follow-up of health-related quality-of-life assessment of patients undergoing home parenteral nutrition for benign disease

Pironi, Loris; Paganelli, Federica; Mosconi, Paola; Morselli-Labate, Antonio Maria; Spinucci, Giulio; Merli, Cecilia; Guidetti, M.; Miglioli, M.

doi:10.1016/j.transproceed.2003.12.008

Cited by 37 publications

(75 citation statements)

References 10 publications

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“…Few prospective or longitudinal studies have evaluated QOL over time. Worsening of health‐related QOL in a study by Pironi et al 62 was associated with deterioration of intestinal function represented by number of PN infusions, weight loss, inability to eat, and having a motility disorder. Ladefoged 46 assessed QOL in 9 individuals at repeated intervals of 6 and 10 months, with a median home PN duration of 24 months, and found no symptomatic improvement or deterioration in their fair or poor QOL.…”

Section: Discussionmentioning

confidence: 97%

An Exploration of Quality of Life and the Experience of Living With Home Parenteral Nutrition

Winkler

Hagan

Wetle

et al. 2010

J Parenter Enteral Nutr

112

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Section: Discussionmentioning

confidence: 97%

An Exploration of Quality of Life and the Experience of Living With Home Parenteral Nutrition

Winkler

Hagan

Wetle

et al. 2010

J Parenter Enteral Nutr

112

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“…However, all but one the published studies had a cross-sectional design (5). The only one prospective study was a 1-year follow-up performed on a small patient population, using the generic tool SF 36 (15). The implementation of the HPN-QOL C in the clinical practice will allow a better definition of factors affecting QoL on HPN and the identification of the threshold for referral for ITx.…”

Section: Discussionmentioning

confidence: 99%

Assessment of Quality of Life on Home Parenteral Nutrition and After Intestinal Transplantation Using Treatment-Specific Questionnaires

Pironi

Baxter²,

Lauro

et al. 2012

American Journal of Transplantation

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In order to investigate the quality of life on home parenteral nutrition and after intestinal transplantation using comparable questionnaires, the treatmentspecific quality of life questionnaire for adult patients on home parenteral nutrition was adapted for intestinal transplant recipients. Both instruments were composed of 8 functional scales, 9 symptom scales, 3 global health status/quality of life scales and 2 single items. A preliminary cross-sectional study enrolling all the patients currently cared at the same hospital was carried out. Exclusion criteria were age ≥ 60 years and hospitalization at time of assessment. Thirty-three home parenteral nutrition patients (100% answered) and 22 intestinal transplant recipients (82% answered) were enrolled. Intestinal transplant recipients showed a better score in following scales: ability to holiday/travel (p < 0.001), fatigue (p = 0.022), gastrointestinal symptoms (p < 0.001), stoma management/bowel movements (p = 0.001) and global health status/quality of life (p = 0.012). A better score for ability to eat/drink (p = 0.070) and a worse score for sleep pattern (p = 0.100) after intestinal transplantation were also observed. The results of this preliminary study with specific instruments were consistent with the main expected improvement of the quality of life related to intestinal transplantation. Further studies in larger patient cohorts are required to confirm these data.

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“…153 Other factors demonstrating statistically significant effects on QoL include narcotic use, oral fluid volumes, nocturia, the presence of a stoma, age and the number of infusions required per week. 16,56,154,155 Thus, any reduction in the latter that may be afforded by the use of trophic factors will be welcomed.…”

Section: Outcome Of Long-term Pnmentioning

confidence: 99%

Review article: the management of long‐term parenteral nutrition

Dibb

Teubner

Theis

et al. 2013

Aliment Pharmacol Ther

140

108

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SummaryBackgroundHome parenteral nutrition (HPN) is currently the management of choice for patients with chronic intestinal failure.AimTo summarise the major issues in delivering long‐term parenteral nutrition (>3 months) and assess outcome as per complications, mortality and quality of life. To assess the evidence for the therapeutic use of trophic factors such as teduglutide and to review evolving therapeutic options in the treatment of chronic intestinal failure.MethodsA literature search using PubMed and MEDLINE databases was performed.ResultsSafe delivery of HPN relies upon individualised formulations of parenteral nutrition administered via carefully maintained central venous catheters by trained patients or carers, supported by a skilled multidisciplinary team. Early diagnosis and treatment of complications including catheter‐associated blood stream infection (reported incidence 0.14–0.83 episodes/patient‐year on HPN) and central venous thrombosis (reported incidence 0.03 episodes/patient‐year) is important to minimise mortality and morbidity. There is a significant variation in the reported incidence of both hepatobiliary complications (19–75%) and advanced liver disease (0–50%). Five‐year survival rates in large centres are reported between 60% and 78% with survival primarily related to underlying diagnosis. Long‐term survival remains higher on HPN than with intestinal transplantation. The role of intestinal lengthening procedures is yet to be validated in adults.ConclusionsHome parenteral nutrition delivered by skilled nutrition teams has low incidences of catheter‐related complications. Most deaths relate to the underlying disease. Therapies such as teduglutide and small bowel transplantation appear promising, but home parenteral nutrition appears likely to remain the bedrock of management in the near term.

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The SF-36 instrument for the follow-up of health-related quality-of-life assessment of patients undergoing home parenteral nutrition for benign disease

Cited by 37 publications

References 10 publications

An Exploration of Quality of Life and the Experience of Living With Home Parenteral Nutrition

An Exploration of Quality of Life and the Experience of Living With Home Parenteral Nutrition

Assessment of Quality of Life on Home Parenteral Nutrition and After Intestinal Transplantation Using Treatment-Specific Questionnaires

Review article: the management of long‐term parenteral nutrition

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