Highlights from Janssen Paediatric IBD speaker tour, August 2013
Moving on: when the child becomes an adult (Part 2)
Dr Richard Russell
Consultant Paediatric Gastroenterologist
Continuing on the theme of paediatric and adult inflammatory bowel disease (IBD), Dr Richard Russell highlighted the management considerations for adolescents transitioning into adult care.
It is known that up to 25% of IBD patients are diagnosed before the age of 18 years,1 representing a significant proportion that will ultimately require transition into adult care.2 This together with the knowledge that those diagnosed with IBD in childhood are likely to have more aggressive disease, further supports the need for an appropriate transition program for these individuals.2,3
In addition, IBD is known to affect young growing children differently to mature adults and consequently will require a different treatment and management approach.
Transition is a process not an event4
Transition is defined as the "purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems."5
Transition takes into account the attitudes, beliefs and skills of the patient, parents and healthcare providers who are involved in facilitating this process,6 whereas Transfer generally refers to the change in the delivery service from a paediatric- to an adult-based service.6,7
The main aim of a transition program is to optimise the patient’s health and their ability to adapt to adult roles.6 Such programs have shown degrees of success in other disease areas, including diabetes, transplantation and cystic fibrosis.2
"All young people with IBD should be continuously prepared throughout their teens to ensure they are ready for the formal transfer of care to adult services."4
Timing it right
Timing of the transition process is of upmost importance and needs to be considered in the context of changes in the other areas of the child’s life. This can prove challenging given that the transition process is likely to occur simultaneously with developmental changes.8
Considerations for timing include where they are at with school and education, if they are entering the workforce, puberty, growth and relationships.8 In the UK, children between the ages of 13 and 16 years of age enter the IBD transition program,4 similarly in Australia, children aged from 12 years to 15 years of age are introduced to the transition program.9 Many hospitals and IBD clinics have resources available that allow readiness to be assessed.
Considerations for timing of transition program10
- Currently available child and adult services
- Treatment and compliance
- Stability of disease and whether complications present
- Disease duration
- Availability of support network
- Emotional and physical well being
The transition process: where communication, collaboration and confidence are the key
In the UK, 77% of paediatric IBD centres provide transition programs.11 In Australia, several hospitals offer a transition program – examples include Westmead Children’s Hospital in Sydney, Royal Children’s Hospital in Melbourne and The Royal Adelaide Hospital in Adelaide.
The structure of the transition program may vary between different centres and countries but the aim is to provide ongoing, age-appropriate education about medications, disease course, reproductive health, risky habits and future treatment plans.2
Understanding patient barriers to transition10
- Poor transfer of information/lack of communication between paediatric and adult services
- Patient immaturity
- Establishing new relationship with adult gastroenterologist
- Cost implications
- Living in rural/remote areas
- Limited information on transition process
- Disease activity
Key principles of transition for adolescents to adult care
The transition program should help address any potential challenge by ensuring:
- Patient remains fully informed of the differences between paediatric and adult healthcare and expectations of care
- Plenty of opportunity to plan in advance
- Development of self-management skills
- Ability to communicate
- Sense of control
- Griffiths A. Best Pract Res Clin Gastroenterol 2004; 18: 509–523.
- Philpott JR. Gastroenterol Hepatol 2011; 7: 26–32.
- Goodhand J et al. Inflamm Bowel Dis 2010; 16: 947–952.
- NACC CICRA 2008. Transition. Available at www. crohnsandcolitis.org.uk/information-and-support/information-about-ibd/transition-information (last accessed 10 March 2014).
- Blum W et al. J Adolescent Health 1993; 14: 570–576.
- The Royal Australasian College of Physicians. Position statement: transition to adult health services for adolescents with chronic conditions. 2007. Available at www .racp.edu.au/index.cfm?objectid=B567F6BD-D4A2-C8EA-4D7BA9C2AABF5D03 (last accessed 24 January 2014).
- Sawyer SM et al. J Paediatr Child H 1997; 33: 88–90.
- Harris MA et al. Am J Lifestyle Med 2011; 5: 85–91 (available free via Medscape).
- The Royal Children’s Hospital Melbourne. Adolescent transition. The basics for young people Factsheet 1a. Available at www. rch.org.au/uploadedFiles/Main/Content/transition/Adolescent_Transition_factsheet_1a.pdf (last accessed 24 January 2014).
- Bennett A. Transition care in IBD. Available at www. crohnsandcolitis.com.au/content/IBD_Forums_2013/Transition_data_CCA_presentation.pdf (last accessed 24 January 2014).
- Smith NP et al. J Pediatr Surg 2007; 42: 296–299.
Date prepared: June 2014. AU-REM0172.