title: Systematic literature review on self-reported quality of life in adult intestinal transplantation.
abstract: Quality of life (QoL) gains importance in intestinal transplantation (ITx). This systematic review aimed to summarize all evidence on self-reported QoL in adult ITx. PubMed, EMBASE, CCTR, CINAHL, and PsycINFO were searched until October 2014. Structured data abstraction was performed and methodological quality was assessed using a standardized checklist. Nine eligible studies were identified addressing one or more study-aims: (i) QoL comparison pre- and post-ITx (n=4); (ii) QoL follow-up post-ITx (n=1); and (iii) QoL comparison between ITx and home parenteral nutrition (HPN) patients (n=6), healthy subjects (n=1), general population (n=1). Assessments indicated sub-optimal methodology throughout, e.g., retrospective (n=2) and cross-sectional (n=7) study designs, non-probabilistic sampling with inadequate matching of ITx subjects, non-standard terminology, lack of operational definitions and variety in assessment instruments. Still, despite these inconsistencies, this review produced three encouraging findings: (i) post-ITx QoL improved versus pre-ITx (anxiety, sleep, social support, leisure); (ii) post-ITx QoL improved with longer follow-up (anxiety, impulsiveness/control); and (iii) QoL between ITx and HPN patients was similar for most domains yet ITx patients excelled for energy, social functioning and travel ability. Although results are encouraging, QoL research in adult ITx is scarce and needs methodological improvement by implementing prospective multicenter studies, adequate QoL conceptualization and appropriate measurements.
authors.affiliation: Abdominal Transplant Surgery, University Hospitals Leuven & Department of Microbiology and Immunology, KU Leuven, Herestraat 49, 3000 Leuven, Belgium. Electronic address: ceulemans.laurens@gmail.com.
authors.forename: Laurens J
authors.initials: LJ
authors.lastname: Ceulemans
authors.affiliation: Health Services and Nursing Research & Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35 blok D-bus 7001, 3000 Leuven, Belgium.
authors.forename: Céline
authors.initials: C
authors.lastname: Lomme
authors.affiliation: Abdominal Transplant Surgery, University Hospitals Leuven & Department of Microbiology and Immunology, KU Leuven, Herestraat 49, 3000 Leuven, Belgium.
authors.forename: Jacques
authors.initials: J
authors.lastname: Pirenne
authors.affiliation: Health Services and Nursing Research & Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35 blok D-bus 7001, 3000 Leuven, Belgium; Institute of Nursing Science, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland.
authors.forename: Sabina
authors.initials: S
authors.lastname: De Geest
mesh_terms: D000328:Adult; D006801:Humans; D007422:Intestines / Q000637:transplantation*; D011788:Quality of Life; D057566:Self Report; D011795:Surveys and Questionnaires; D014184:Transplantation, Homologous / Q000523:psychology