title: Outcomes and patients' perspectives of transition from paediatric to adult care in inflammatory bowel disease.
abstract: OBJECTIVE
  To describe the disease and psychosocial outcomes of an inflammatory bowel disease (IBD) transition cohort and their perspectives.
  
  
  METHODS
  Patients with IBD, aged > 18 years, who had moved from paediatric to adult care within 10 years were identified through IBD databases at three tertiary hospitals. Participants were surveyed regarding demographic and disease specific data and their perspectives on the transition process. Survey response data were compared to contemporaneously recorded information in paediatric service case notes. Data were compared to a similar age cohort who had never received paediatric IBD care and therefore who had not undergone a transition process.
  
  
  RESULTS
  There were 81 returned surveys from 46 transition and 35 non-transition patients. No statistically significant differences were found in disease burden, disease outcomes or adult roles and responsibilities between cohorts. Despite a high prevalence of mood disturbance (35%), there was a very low usage (5%) of psychological services in both cohorts. In the transition cohort, knowledge of their transition plan was reported by only 25/46 patients and the majority (54%) felt they were not strongly prepared. A high rate (78%) of discussion about work/study plans was recorded prior to transition, but a near complete absence of discussion regarding sex (8%), and other adult issues was recorded. Both cohorts agreed that their preferred method of future transition practices (of the options offered) was a shared clinic appointment with all key stakeholders.
  
  
  CONCLUSIONS
  Transition did not appear to adversely affect disease or psychosocial outcomes. Current transition care processes could be optimised, with better psychosocial preparation and agreed transition plans.
authors.affiliation: Alice L Bennett, Robert V Bryant, Jane M Andrews, Department of Gastroenterology, Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia.
authors.forename: Alice L
authors.initials: AL
authors.lastname: Bennett
authors.affiliation: Alice L Bennett, Robert V Bryant, Jane M Andrews, Department of Gastroenterology, Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Moore
authors.affiliation: Alice L Bennett, Robert V Bryant, Jane M Andrews, Department of Gastroenterology, Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia.
authors.forename: Peter A
authors.initials: PA
authors.lastname: Bampton
authors.affiliation: Alice L Bennett, Robert V Bryant, Jane M Andrews, Department of Gastroenterology, Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia.
authors.forename: Robert V
authors.initials: RV
authors.lastname: Bryant
authors.affiliation: Alice L Bennett, Robert V Bryant, Jane M Andrews, Department of Gastroenterology, Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia.
authors.forename: Jane M
authors.initials: JM
authors.lastname: Andrews
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D003093:Colitis, Ulcerative / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D003142:Communication; D003424:Crohn Disease / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D003695:Delivery of Health Care; D005260:Female; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010358:Patient Participation; D057240:Patient Preference; D010361:Patients / Q000523:psychology*; D010465:Perception; D010817:Physician-Patient Relations; D012189:Retrospective Studies; D013021:South Australia; D062606:Tertiary Care Centers; D060305:Transition to Adult Care; D016896:Treatment Outcome; D055815:Young Adult
keywords: Chronic illness; Crohn’s disease; Disease outcomes; Inflammatory bowel disease; Patient perspectives; Transition care; Ulcerative colitis