Managing IBD at the extremes of age: Transitioning Teens

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1 Oxford Inflammatory Bowel Disease & Hepatology MasterClass Managing IBD at the extremes of age: Transitioning Teens Dr RM Beattie Consultant Paediatric Gastroenterologist Southampton

2 Challenges in the management of the young person with IBD Clinical Presentation Disease Severity Growth Impact of treatment Social factors (child in law till age 18 years) Organisation of services Transition to adult services/adult life.. IBD standards

3 Inflammatory Bowel Disease 25% of onset in childhood under age 18 years Nutritional impairment in most at diagnosis (up to 85%) Reduced intake is the principal cause (55-80% in active disease) Hypermetabolism, malabsorption Impaired growth, delayed onset of puberty (up to 50%), potential for reduced final adult height intake energy, nutrient, micronutrient Inflammatory response (inflammatory proteins, IL-6) Endocrine factors Disease site (jejunum) and severity, early onset Drugs Normal growth primary outcome of therapy (final adult height)

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12 FIGURE 1 Final height is significantly greater than at diagnosis Sawczenko, A. et al. Pediatrics 2006;118: , Copyright 2006 American Academy of Pediatrics

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14 Impact of disease Not able to pass through adolescence normally Look younger Excess time off school Embarrassing nature of the disease Difficulty with friendships Adjustment to chronic disease Over dependence on parents Compliance

15 Management strategy Control of disease symptoms Correction of nutritional impairment Avoidance of disease and treatment complications Normal growth, pubertal, educational and social development

16 Clinical networks Regional centre in conjunction with local hospitals and primary care Multidisciplinary team Patients Families Transition Evidence based algorithms of care

17 Exclusive enteral nutrition Enteral feed with exclusion of other foods for 8 weeks followed by controlled food reintroduction Reduces local and systemic inflammation and promotes weight gain Steroid sparing Probably as effective as steroids Polymeric feeds generally used Remission rate 60-80%, High relapse rate (all treatments)

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20 Maintaining remission Or suppressing low grade smouldering disease Should step down therapy be used? Are adequate symptom control and normal growth an adequate proxy of disease control? Risk benefit of different treatment strategies Consider anxiety, IBS, psychology etc Consider reassessment of disease

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23 A purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult oriented health care systems.

24 The increasing prevalence of IBD in childhood, the wide variety of symptoms, the possibility of delayed growth and some significant differences in treatments between children and adult patients, are all important reasons for creating a specific IBD transition policy.

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26 Transition issues Age of transfer Growth and puberty Medical management (plus endoscopy) Chronic ill health /continuing health care needs Dependence vs independence Psychological/social factors Education school, college, university Local factors MDT/networking

27 Transition issues(2) Patient centred Not one size fits all Partnership with patients and families Process not a single entity Process begins in early teens Patient empowerment Provision of information Satisfactory conclusion

28 Models of delivery Transfer Handover clinics Transitions clinics Young adult service Combination as part of a clinical network

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31 Challenges in the management of the young person with IBD Use of steroid sparing agents. Focus on enteral nutrition and early use of immunomodulators Low threshold for reinvestigation Close attention to nutrition Consider Surgery Appropriate use of biological agents in circumstances where other interventions are not possible (e.g. localised resection / progressing puberty) Consider psychosocial factors including anxiety Use the multidisciplinary team Be aware of growth potential by careful pubertal assessment Recognise growth may continue into late adolescence Recognise the need for nutrition in order to grow

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34 Points for discussion 25% of IBD presents under age 18 years Child (in law) until age 18 Who should best manage long term treatment regimens started in childhood to continue into adulthood Transfer/transition 16 years, 18 years? Young persons service Adolescent medicine Real challenge of managing young people with IBD

35 Further reading Goodhard J, Hedin CR, Croft NM, Lindsay JO. Adolescents with IBD; the importance of structured transition care. J Crohn s Colitis 2011;5: El-Matary W. Transition of children with Inflammatory Bowel Disease; big problem, little evidence. World J Gastroenterol 2009; 15: Ezri J, Marques-Vidal P, Nydegger A. Impact of disease and treatments on Growth and Puberty of paediatric patients with inflammatory bowel disease. Digestion 2012;85: Pfefferkorn M, Burke G, Griffiths A et al. Growth abnormalities persist in newly diagnosed children with Crohn s disease despite current treatment paradigms. J Paed Gastro Nutr 2009; 48: Vasseur F, Gower-Rousseau C, Vernier-Massouille G et al. Nutritional status amd growth in Paediatric Crohn s disease: a population based study. Am J Gastroenterol 2010; 105: