title: Counselling variation among physicians regarding intestinal transplant for short bowel syndrome.
abstract: BACKGROUND
  Intestinal transplant in infants with severe short bowel syndrome (SBS) is an emerging therapy, yet without sufficient long-term data or established guidelines, resulting in possible variation in practice.
  
  
  OBJECTIVE
  To assess current attitudes and counselling practices among physicians regarding intestinal transplant in infants with SBS, and to determine whether counselling and management vary between subspecialists or centres.
  
  
  METHODS
  A national sample of practicing paediatric surgeons and neonatologists was surveyed via the American Academy of Paediatrics listserves. Results were analysed by physician subspecialty and again by presence or absence of intestinal transplant at respondent's centre.
  
  
  RESULTS
  The survey was completed by 433 respondents, consisting of 363 neonatologists and 70 paediatric surgeons. Fifty-seven respondents (13.2%) practiced at a centre that performed intestinal transplants in children. The vast majority of respondents (91% for preterm, 95% for term neonates) felt that maintaining a neonate with SBS on total parenteral nutrition for intestinal transplant was ethically optional (neither impermissible nor obligatory), and that parents should be given an informed choice whether to pursue that option. However, only 33% indicated they often/always offer intestinal transplant as a treatment option to families in this situation.
  
  
  CONCLUSIONS
  There is a marked disparity between individual physicians' beliefs regarding the acceptability of intestinal transplant for severe SBS and their reported practice. Wide variability exists among physicians with respect to their knowledge, beliefs and practice regarding severe SBS, raising concerns about transparency and justice. Survival data prior to transplant, currently unavailable, are essential to rational decision making and informed parental permission.
authors: Division of Newborn Medicine, Boston Children's Hospital, Harvard School of Medicine, Boston, Massachusetts, USA.
authors: Christy L
authors: CL
authors: Cummings
authors: Division of Pediatric Surgery, Nationwide Children's Hospital, Columbus, Ohio, USA.
authors: Karen A
authors: KA
authors: Diefenbach
authors: Department of Pediatrics, Program for Biomedical Ethics, Yale University School of Medicine, Pediatric Ethics Program, Yale New Haven Children's Hospital, New Haven, Connecticut, USA.
authors: Mark R
authors: MR
authors: Mercurio
mesh_terms: D003376:Counseling / Q000639:trends*; D003657:Decision Making; D026690:Ethics, Clinical; D005260:Female; D006801:Humans; D007421:Intestine, Small / Q000637:transplantation*; D008297:Male; D016377:Organ Transplantation; D010818:Practice Patterns, Physicians' / Q000941:ethics*; D036301:Qualitative Research; D012778:Short Bowel Syndrome / Q000601:surgery*
keywords: Clinical Ethics; Informed Consent; Newborns and Minors; Technology/Risk Assessment; Transplantation