title: Caregiver evaluation and satisfaction with autologous bowel reconstruction in children with short bowel syndrome.
abstract: OBJECTIVE
  Short bowel syndrome (SBS) describes the malabsorptive state seen following extensive bowel resection. Management aims to optimise nutritional intake, promote intestinal adaptation, and prevent the development of complications. Surgical options such as autologous gastrointestinal reconstruction (AGIR) attempt to restore enteral autonomy to the patient. Although the literature focuses on the objective measurements of success following AGIR techniques, subjective assessment of its effect on the quality of life (QoL) should also be sought. Because children with SBS are reliant on caregivers, caregivers' satisfaction with surgery and their perception of the effect of AGIR on their daily lives should be assessed. This is the first report of caregiver satisfaction following AGIR in children.
  
  
  METHODS
  All children with SBS who had AGIR between January 1999 and June 2010 were identified. A questionnaire was developed. Caregivers were asked to complete the questionnaire to rate their satisfaction with surgery and the pre- and postoperative daily care, medical needs, and subjective interpretation of QoL for their child. Data were analysed using SPSS version 18, using the Friedman nonparametric test and 2-way analysis of variance by rank. Statistical significance was set at ≤0.05.
  
  
  RESULTS
  Thirty-two children were identified. Seven assessments were done outside our centre (5 outside the UK) and were not included in the study. One patient moved to another city and was not contacted. Two children died. Twenty patients were contactable and were included in the present study. Parents were satisfied with the AGIR and saw improvements in their child's physical condition, bowel habit, and subjective interpretation of QoL postoperatively. Parents perceived significant improvements in the ease of caring and in aspects of their relationship with their child, including the quality of time spent, their enjoyment, and the level of their frustration with them.
  
  
  CONCLUSIONS
  The present study found that AGIR improved the physical well-being of the child and gave the impression of improvements on specific QoL aspects for both the child and the parents.
authors.affiliation: Department of Paediatric Surgery, Royal Manchester Children's Hospital, University of Manchester, Manchester, UK.
authors.forename: Harriet
authors.initials: H
authors.lastname: Edge
authors.forename: Ruth
authors.initials: R
authors.lastname: Hurrell
authors.forename: Adrian
authors.initials: A
authors.lastname: Bianchi
authors.forename: Gordon
authors.initials: G
authors.lastname: Carlson
authors.forename: Taqi
authors.initials: T
authors.lastname: Zaidi
authors.forename: Sara
authors.initials: S
authors.lastname: Gozzini
authors.forename: Basem A
authors.initials: BA
authors.lastname: Khalil
authors.forename: Antonino
authors.initials: A
authors.lastname: Morabito
mesh_terms: D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D017060:Patient Satisfaction; D010865:Pilot Projects; D011182:Postoperative Care / Q000379:methods; D011300:Preoperative Care / Q000379:methods; D011788:Quality of Life; D019651:Plastic Surgery Procedures / Q000379:methods*; D012778:Short Bowel Syndrome / Q000503:physiopathology* / Q000601:surgery*; D011795:Surveys and Questionnaires; D016896:Treatment Outcome