Delivery of transitional care of adolescents with IBD entering adult services varies across Australia and may benefit from standardised guidelines, a survey suggests.
Researchers from Australia and New Zealand also suggest the guidelines could be used as a proxy measure of service delivery to identify where additional resources are needed and improve the quality of care across the region.
They distributed an electronic survey to 59 paediatric gastroenterologists in January 2023 with 17 (29%) completing the survey (13 from Australia and 4 from New Zealand), 13 of whom had access to a dedicated IBD transition clinic.
The mean duration of caring for children with IBD was 16 years.
Survey results indicated that first discussion of the transition process with adolescent patients most commonly took place at age 13–15 (53%), followed by age 16–18 (47%), with the main discussion topics including continuing adherence (88%), smoking (59%), alcohol use (59%) and recreational drug use (59%).
Less than half of the respondents (47%) provided education/support materials about the transition process to their patients. Of those who did provide patients resources, seven reported the use of booklets, three recommended national support groups and websites and two said they conducted teaching sessions.
Transition readiness assessments were infrequent, carried out by just four of the respondents. The most common assessments were IBD knowledge (4/4), self-management skills (4/4), transition readiness (3/4), and one doctor assessed adherence, quality of life, own clinical IBD history, and anxiety/depression.
All but one respondent involved the adolescent’s GP in the transition process, which mainly consisted of sending a letter to state that the process had started.
Using data from 10 respondents, patients attended transition clinics between one and seven times, which were often carried out using a combination of face-to-face and telehealth consults. The clinics mostly included adult and paediatric gastroenterologists and an IBD nurse. Few involved a surgeon or a dietitian.
While most (76%) respondents overall did not use local, national, or international guidelines to inform their transition practice, 15 (88%) considered the development of a standardised Australasian guideline as “beneficial/extremely beneficial”.
Among those answering the question, 65% endorsed the inclusion of transition assessments, with a preference towards starting the process at age 13– 15.
Other comments included having a framework to assess psychological state/needs, guidance around sexual health issues including gender identity, and the incorporation of a virtual model to facilitate transition clinics at certain hospitals.
“The finding that the majority (93%) of respondents used no IBD specific guidelines to inform their practice in transitioning adolescents with IBD to adult care warrants considerable attention,” the authors wrote in JGH Open [link here].
“This is a surprising finding and highlights a lack of progress as a national IBD audit carried out in Australia in 2012–2013… revealed that few hospitals had IBD protocols of any type available for clinicians.
“While recommendations had been made for improvement in the delivery of IBD care, including many aspects of transition, it appears as if considerable deficits remain.”
The authors said that standardised transition guidelines should be developed, incorporating evidence-based recommendations of cost and patient benefit, and be promoted through educational meetings and national society endorsement.