Studies included
| Study | Research aim | Sample | Design | Data analysis | Key finding | Suggestion* |
|---|---|---|---|---|---|---|
| Bollegala et al (2003),29 Canada | Resource usage during transfer of care in IBD | N=95 47 male, 48 female 69 CD, 26 UC Mean diagnosis age 12.9 years Mean transition age 18 years | Retrospective chart review 1999–2008. Resource usage compared during, year before transfer and year after transfer | Wilcoxon signed-rank t test and McNemar’s test | Disease activity higher during paediatric care Adult care=few clinic visits (p<0.05), more documented non-compliance (p<0.05) | Comprehensive transition programmes that address these shortfalls are needed to optimise care |
| Dabadie et al (2008),33 France | Explored patients and parents perceived transition of care in IBD | N=34 28 CD, 6 UC Mean age at diagnosis 11.8 years Mean age at transition 18 years | Retrospective survey for patients who visited a transition centre 1988–2005, separate parent survey. Survey sent to 48, response rate 71% | χ2 and Fisher’s exact test | 85% of patients and 74% of parents felt they were ready for transition. All patients rated joint visits as beneficial for transferring records, and 93% considered them helpful in building confidence in new gastroenterologist. 79% of parents visited adult care with their child | Effective planning, including a joint medical visit to enable coordinated transition |
| Hait et al (2008),28 America | Explored gastroenterologists’ perspectives on improving transition of care in IBD | N=363 adult gastroenterologists 85% male, 69% private practice, 62% >15 years of experience | Retrospective survey of adult gastroenterologists. Survey sent to 1132, response rate 34% | χ2 and Fisher’s exact test | 55% reported knowledge of medical history as important, 69% reported knowledge of medical regimen as important. 51% received inadequate medical history from paediatric providers. 19% were less concerned about the patient’s ability to identify previous healthcare providers or attend visits themselves (15%). 46% felt competent addressing developmental aspects relating to adolescents | Further training for adult providers in adolescent issues, formal transition checklist, education on diagnosis and medical history for patients |
| Sebastian et al (2012),34 UK | Identified perceived needs and barriers to successful transition | 82 paediatric gastroenterologists 358 adult gastroenterologists | Retrospective survey of 132 paediatric gastroenterologists and 729 adult gastroenterologists. Response rates 62% and 49%, respectively | Wilcoxon signed-rank test and Spearman's correlation | Structured transition service perceived as very important by 80% paediatric gastroenterologists versus 47% adult gastroenterologists (p<0.01). Both groups ranked age as the most important criterion for transition with suggested age being 16 years (56% paediatric and 70% adult) and 18 years (82% paediatric and 81% adult). 43% paediatric staff suggested transition during remission versus 12% adult staff. 79% of adult services identified inadequacies in preparation of transition versus 42% paediatrics. Main areas of perceived deficiency in preparation by adult gastroenterologist were patients’ lack of knowledge about condition and treatment and coordination of care; for paediatric, it was problems in self-advocacy and coordination of care. Lack of resources, clinical time and critical mass of patients were factors ranked highest by both groups as barriers to transition care. The majority of staff highlighted suboptimal training in adolescent medicine for adult gastroenterologists | Bridge gaps between paediatric and adult gastroenterologists, address training deficiencies to help remove barriers to transition |
| Wright et al (2014),35 Australia and New Zealand | Explored perceived needs of gastroenterologists and identified barriers to effective transition | N=73 66% adult, 34% paediatric 10% New Zealand, 90% Australian | 25-item web-based survey 178 responses Response rate 41% | Mann–Whitney U test | Psychological maturity and readiness as assessed by adult caregiver were the most important factors in determining timing of transfer. Self-efficacy and readiness as assessed by adult caregiver were considered the two most important factors to determine timing of transition by both groups of gastroenterologists. Poor medical and surgical handover and patients’ lack of responsibility for their own care were perceived as major barriers to successful transition by both paediatric and adult gastroenterologists | Standardise transition care practices with strategies aimed at optimising communication, patient education, self-efficacy and adherence to improve outcomes |
| Goodhand et al (2010),16 UK | Effect of age of IBD onset and specific problems for adolescents and adults | 100 adolescents in transition clinic matched to 100 adults. Disease duration was comparable, median 4 years (range 3–6 years). Median age at diagnosis 15 years for adolescents, 39 years for adults | Retrospective case note review versus control with 5 year follow-up | Mann–Whitney U test, χ2 and Fisher’s exact test | CD was significantly more common in the adolescents. Disease distribution was ileocolonic in 69% of adolescents and 28% of adults, restricted to the ileum in 20% of adolescents and 47% of adults, and colonic only in 11% and 22%, respectively. Upper gastrointestinal involvement occurred in 23% of adolescents, but was not seen in adults (p<0.01). Total UC was seen in 67% of adolescents and 44% of adults (p<0.01). Contrary to previous data, adolescents did not receive more ionising radiation than adults. Requirement for immunosuppressive therapy was higher in the adolescent group (53% vs 31%, respectively, p<0.01). Likewise, 20% of adolescents had required biological therapy versus 8% adult cohort (p<0.05) | Generate transition clinics to assist adult gastroenterologist manage patients with severe disease and ongoing inflammation who have failed multiple therapeutic regimens |
*Highlights at least one suggestion made by authors.
CD, Crohn's disease; IBD, inflammatory bowel disease; UC, ulcerative colitis.