Expert analysis: Transition from childhood to adult care in coeliac disease
4th April 2019
Transition is defined as the purposeful, planned movement of adolescents and young adults from a child-centred to adult-oriented health care system.1
It represents a delicate moment for the patient and the family, who are both at the centre of the transition, and a challenge for the physician, who guides and coordinates this process. In fact, in children, the delivery of care is fundamentally family-centred, whereas in adults, responsibility becomes autonomous. This means that adolescents have to work hard to overcome their reliance on parents and, on the other hand, parents might find it difficult to step back and alow adolescents to make independent decisions.2 In this process, both overprotection and inadequate support might be detrimental and could lead to an unsuccessful transition, with increased complications and low quality of life in adulthood.
Transition is nowadays an emerging and important issue because the number of children affected by chronic diseases or complex disabilities is increasing. In the US, approximately 20% of adolescents have special health care needs and it is estimated that less then 50% of patients aged 12–17 years receive adequate support and services for their transition to adult care.3 Lower numbers still are registered in ethnic minorities and poorer sections of the population. The low rates of transition support may be related to the fact that only 30% of paediatricians make referrals to adult physicians, and only 15% provide transition education materials.4
The transition process
Although the age of transition to adult care might vary, according to differing growth and maturation among individuals, it is suggested that discussion of transition plans should be introduced early, ideally between 12 and 14 years and the plans should be developed between 14 and 16 years of age. Transfer should take place around 18 years of age, always considering the grade of maturation and the patients will. Moreover, transition can be triggered by important events in the patient’s life: for example, age, leaving school, marriage, pregnancy, etc. It should be emphasised that transition to an adult provider is a complex process, not just one event (Figure 1).
Figure 1: Click image to view larger version
During transition, several factors that could prohibit a successful outcome should be considered and prevented. The barriers could be related to the patient themselves (emotional or cognitive delay, immaturity, difficulties in communication with health provider5 and, above all, attachment to paediatric institution and non-compliance with transfer6,7), to the family (parents’ anxiety and concerns, difficulties in communication with the adolescent, excessive attachment to paediatric health care providers), or to other factors (health insurance issues).
Transition can follow many models. In some settings, paediatric and adult medical teams meet the patient at the same visit to discuss transition; in others, both paediatric and adult clinicians meet annually to prepare transfer. Joint transition clinics with paediatric and adult clinician should be established in order to allow a smooth transfer of the patient, generating trust in the new physician. This models have been linked to good outcomes such as improved care and better health-related quality of life (QoL).8
Focus on coeliac disease: specific aspects
While there are several transition recommendations for chronic disease, very few documents have been written about transition in coeliac disease (CD).2 The fact that there is no need for specific drugs, and often there are no symptoms from not adherence to gluten-free diet (GFD), makes CD perceived as a not severe disease by adolescents and adult gastroenterologists and creates specific barriers for transition in this category of patients. This calls for a ‘transition document’, created by the paediatrician and containing essential data about diagnosis, growth, follow up, comorbidities, psychological aspects and dietary compliance. This document allows a more structured and efficient transition process.
According to ESPGHAN/NASPGHAN criteria, routine small intestinal biopsy is not recommended to reconfirm the diagnosis of paediatric CD patients. This differs from adult policy, because in adult care is a follow-up biopsy is frequently required to document healing for future management and prognostic information. Nevertheless, there are specific situations which require to repeat biopsy before the transition: if CD diagnostic criteria have not been fulfilled at the moment of the diagnosis, if symptoms suggest active CD or other diagnosis, if patient or clinician necessitates documentation of histological healing, if the adolescent is not following gluten free diet. A gluten challenge after transition is normally not required if diagnostic criteria have been followed, also in children younger than two years.9 A gluten challenge, traditionally made for three months and with an adequate amount of gluten, should be considered when the primary diagnosis of CD has not met standards and guidelines, or when patient requests proof of the diagnosis. There are not clear guidelines in gluten challenge. Nevertheless, it is recommended to perform specific CD serology and biopsy before the challenge and to monitor it with serology. An increase in CD-serum autoantibodies, also without relapse of symptoms, is related to deterioration of histology and suggests to perform the biopsy.
Many issues should be discussed with the patient when approaching transition: medical monitoring schedule with lab tests and visits, risk of complications (even if the patient remains asymptomatic) sexual and fertility problems,10 implications with future career, psychological problems and, above all, GFD adherence, strategies and complications in case of poor compliance. Decrease in compliance has been reported among adolescents in several studies.11 It is estimated that up to 40%12 of adolescents fail to adhere to GFD and the main reason is that they believe that a systematic low intake of gluten does not affect their health, as it does not cause any intestinal symptoms.13 This lack of information is extremely dangerous and lead to poor outcome in adult healthcare. This calls for new communication strategies in order to overcome differences in culture and language between the adolescent and his physician. Flexibility in communication styles should be implemented. In this scenario, technology (videoconferences, SMS messages,14 online consultations, emails,15 apps) may improve adherence to therapy, allow earlier identification of medical deterioration represents an important aid for continuous education.
Conclusions
This brief article highlights the complexity of transition process and underlines the necessity of transition policies. This calls for development of clear specific guidelines based on outcome-related research. Different models should be evaluated in RCTs to overcome specific transition items such as barriers to successful outcomes, poor compliance and complications, in order to improve quality of life for the future adult.
References
- Blum RW et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolescent Health 1993;14:570–6.
- Ludvigsson JF et al. Transition from childhood to adulthood in coeliac disease: the Prague consensus report. Gut 2016;65:1242–51.
- McManus MA et al. Current status of transition preparation among youth with special needs in the United States. Pediatrics 2013;131:1090–7.
- Davis AM et al. Transition care for children with special health care need.s Pediatrics 2014;134;900.
- Bryon M, Madge S. Transition from paediatric to adult care: psychological principles. J R Soc Med 2001;94(suppl 40):5–7
- Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics 2005;115:112–20.
- Kyngas H, Hentinen M, Barlow JH. Adolescents’ perceptions of physicians, nurses, parents and friends: help or hindrance in compliance with diabetes self-care? J Adv Nurs 1998;27:760–9
- Crowley R, Wolfe I, Lock K, et al. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011;96:548–53.
- Husby S et al. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. J Pediatr Gastroenterol Nutr 2012;54:136–60.
- Zugna D et al. A nationwide population-based study to determine whether coeliac disease is associated with infertility. Gut 2010;59:1471–5.
- Errichiello S et al. Celiac disease: Predictors of compliance with a gluten-free diet in adolescents and young adults. JPGN 2010;50:54–60.
- Czaja-Bulsa G, Bulsa M. Adherence to gluten-free diet in children with celiac disease. Nutrients 2018;10:1424.
- Freeman HJ. Dietary compliance in celiac disease. World J Gastroenterol 2017;23(15):2635–9.
- Haas K, Martin A, Park KT. Text message intervention (TEACH) improves quality of life and patient activation in celiac disease: A randomized clinical trial. J Pediatr 2017;S0022-3476:30328-1.
- Harvey K et al. Health communication and adolescents: what do their emails tell us? Fam Pract 2008;25:304–11.
