Transitioning from paediatric to adult services

The challenges of transitioning care for gastroenterology patients from paediatric to adult services was the focus of a dedicated session during the Irish Society of Gastroenterology Winter Meeting 2024.

An expert panel of leading Irish and UK speakers outlined best practice approaches and the key challenges in care, with a lively discussion session after the presentations.

Transitioning from paediatric to adult medical care is a big change for young people that can impact outcomes and experiences and must be carefully managed, the panel stressed. Having a set age for transition is not ideal as maturity and readiness varies, some speakers noted.

Paediatric services also have a wider team of staff, particularly on the support side. The increased self-management approach and reduced services like psychology can be a big shock for young adult patients.

Dr Cara Dunne, Consultant Gastroenterologist at St James’s Hospital and Children’s Health Ireland (CHI) at Crumlin, Dublin, gave a comprehensive presentation titled ‘Mind the transition gap’.

“Transition is a vulnerable time for adolescents and young adults and there needs to be local and national guidelines available for healthcare professionals on transition of these patients,” she told the meeting.

Early and structured transition processes are critical to mitigate potential challenges and ensure seamless continuity of care, Dr Dunne said. 

Dr Dunne stressed that children and adolescents are not ‘little adults’ and have their own distinct needs and wants of health services. Being aware and responsive to this is important, said Dr Dunne, who provided the example of how clinics are structured and how patient information is delivered – apps vs leaflets, etc: “This is the digital generation we are dealing with.”

Being aware of potentially risky behaviour and the importance of sexual and reproductive health for adolescents (risk of pregnancy and its impact on the patient’s primary disease), is also vital in this patient cohort.

Dr Dunne outlined recent service developments and improvements in gastroenterology transition services in Ireland, including dedicated clinics for inflammatory bowel disease (IBD), and new guidelines and pathways. However, services currently vary geographically and there remains a need for more integration and expanded services.

It is planned to establish a more integrated national clinic network linking into CHI services. Other plans include building a support network for patients, rolling out a health passport for these patients, and establishing a national patient registry on transition outcomes.

Dr Dunne reminded the audience that demand for paediatric gastroenterology services is increasing in Ireland, with 25 per cent of IBD diagnoses occurring in childhood and adolescence with the number continuing to rise.

The next speaker was Dr Dunne’s colleague Dr Jayne Doherty, Aspire Fellow in Intestinal Failure and Complex Nutrition, St James’s Hospital, Dublin, who discussed the findings of her own research and other studies on this cohort.

She reminded the meeting that brain development doesn’t stop at 18 years and continues into the 20s.

Using the Transition Readiness Assessment Questionnaire (TRAQ), Dr Doherty and colleagues carried out a cross-sectional prospective study of 67 IBD patients attending a structured adolescence specific transition clinic.

The study found that taking responsibility for medications, clinic appointments, and following-up results, were areas in which young IBD patients struggled when transitioning to adult services. Younger age at diagnosis of IBD and male gender negatively impacted TRAQ score. To improve patient transition to adult services, transition clinics need to focus on these particular areas and patient groups, Dr Doherty said.

The next speaker, Dr Emer Fitzpatrick, Consultant Paediatric Hepatologist, CHI at Crumlin, gave a presentation titled ‘Growing up with liver disease’.

There are a range of liver conditions that can impact children, either congenitally or developing at a young age, and liver transplantation is necessary for some patients. Conditions include progressive familial intrahepatic cholestasis, Alagille syndrome, and liver disease in children with Alpha-1 antitrypsin deficiency.

The aetiology of childhood-onset liver disease is different to adults, Dr Fitzpatrick explained, adding that young people with liver disease may have growth, development, and psychosocial impairment.

“The perception is that liver disease is an adult problem, mostly due to alcohol or MASLD [metabolic dysfunction-associated steatotic liver disease] and fatty liver. But actually, we have a big cohort of children, 700 plus, with chronic liver disease,” she told the Medical Independent.

The final speaker of the session, Dr Deepak Joshi, Transplant Hepatologist and Hepato-Pancreato-Biliary Endoscopist, King’s College Hospital, London, discussed the UK experience of developing a transition pathway for gastroenterology and hepatology.