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

Abstract

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.

Management of Home Parenteral Nutrition: A Prospective Multicenter Observational Study

“…The age and gender distribution in our study are comparable to those of other surveys, which also showed a much higher rate of female HPN patients [4,[13][14][15] . This is influenced by the underlying diseases, for example, post-radiation enteritis occurring in patients with gynecological malignancies.…”

“…Many other studies determined the QoL using the Karnofsky score, the SF-36 or a new specific questionnaire for HPN patients. Overall, patients with HPN have poorer QoL than healthy people or patients with chronic illnesses [13,19,[32][33][34] . An earlier study with only 13 participants showed that none of those HPN patients had a regular employment, but 46% did most of the housekeeping [35] .…”

Management of Crohnʼs Disease in the New Era of Gut Rehabilitation and Intestinal Transplantation

“…13,17,18,27 However, most patients do not escape the associated life-threatening complications including line sepsis, central venous thrombosis, and liver failure in addition to other significant metabolic and psychosocial derangements. 17,27,40 According to different North American and European studies, patients with diagnosis of CD represent nearly one-third of the HPN population excluding those with cancer and AIDS. [16][17][18]41 With variable HPN-associated complication rates including higher incidence of recurrent line sepsis, the survival outcome of the HPN-dependent CD patients seems to be higher than those with other gut disorders with a minimum 5-year survival rate of 80%.…”

The Current State of Intestine Transplantation: Indications, Techniques, Outcomes and Challenges

“…Quality-of-life (QOL) has been demonstrated to be better after intestine transplantation compared to patients remaining on PN (56)(57)(58). In two studies of QOL after intestine transplantation, the presence of G-tubes or ostomies and repeat hospitalization were factors associated with decreased scores (56,58).…”

“…In two studies of QOL after intestine transplantation, the presence of G-tubes or ostomies and repeat hospitalization were factors associated with decreased scores (56,58). The Pittsburgh group (57) compared QOL before and after intestine transplantation in 76 surviving adult recipients with mixed results.…”