Transition of inflammatory bowel disease patients from pediatric to adult care: an observational study on a joint-visits approach

Up to the 25% of patients affected by Inflammatory Bowel Disease (IBD) receive their diagnosis before the age of 20 years, with a constantly growing incidence of the diagnosis made during childhood [1]. Pediatric IBD shows peculiar features compared to adult one, including a more extensive disease and a more frequent upper gastrointestinal tract involvement. Moreover, patients with an onset diagnosed during childhood are recently more likely to receive immunosuppressive or biological therapies since from the moment of diagnosis [2]. Children with IBD are found to have frequent mood disorders and are considered at higher risk for difficulties in social, family and school functioning [3]. A crucial phase in the management of children with IBD is the transition from the pediatric to the adult IBD care system, requiring a full achievement of maturity and self-management skills, which not occur at the same age for each individual [4]. The “ideal” patient for a transition process should be a young independent adult in a clinical remission phase, with no change of medical therapy or surgical intervention necessarily planned [5].

The guideline of the British Society of Gastroenterology on transition of young adults with chronic digestive disease recommends a shared management between pediatrician and adult center, through an educational and conscious process that involves both the patient and his/her family, verifying the readiness of the young and his/her level of awareness [6]. The Transition Readiness Assessment Questionnaire (TRAQ) is one of the most useful tool (not disease specific) for assessing patient’s readiness to fulfill the transition from the pediatric health service to the adult care [7], exploring both the self-management domain (e.g. handling medications, arranging medical follow-up visits, managing finances, health insurance) and the self-advocacy one (e.g. communication with providers and managing activities of daily living and use of school and community resources). As far as IBD are concerned, age seems to be the best predictor of TRAQ score, and lower scores on the medication management section are associated with higher risk of nonadherence [8].

The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) is a validated health-related quality of life (HRQoL) tool, designed to find out IBD symptoms, emotional status and limitation in social activities due to IBD symptoms in the last 2 weeks [9].

The aim of this study is to evaluate the outcomes of the transition process of consecutive patients transferred from two pediatric referral hospitals to an IBD adult hospital unit, in order to explore patients’ readiness and its association to the quality of life.

We have explored the outcome of the transition process of 82 consecutive IBD patients coming from two pediatric referral hospitals to one IBD adult university hospital center, their readiness and the consequent impact on quality of life. Our model included two combined pediatric–adult visits, the first one at the children’s hospitals, in presence of parents, and the second one at the adult center. Despite there is no evidence that this model of transitional care is superior over others, the "joint-visit" model has been shown to be associated with a higher effectiveness on transmitting clinical data and building confidence in adults’ clinicians [14].

A recent study has been conducted on the transition process from pediatric to adult care of 106 young patients affected by IBD, investigating the 1-year success outcomes of this process [15]. This study has shown a significant maintenance or even a reduction of the disease activity scores and number of exacerbations in those patients who were in a remission phase at the time of transition. Our results confirm this data, strengthening the importance of the right timing of transition to the adult center.

For this reason, no strict chronological criteria have been considered in order to plan the timing of transition, and a case-by-case selection, according to IBD pediatricians’ judgment, has been used when possible.

The mean age observed at transition in our cohort was 20.1±2.7 years, exceeding the recommended ideal interval of the age of 17 and 19 [6]. In addition to this, patients who carried out transition with a moderate to severe disease activity have been resulted to be younger than those who transited with a mild or absent one (average age of 19.3±2.4 years vs. 20.2±2.5 years). This fact could be attributed to a lower engagement towards transition process made by patients and caregivers in those cases that did not present symptoms.

For this reason it can be also assumed that patients who transit on a younger age, and who often reach the adult hospital in need for hospitalization and surgery, making the experience of the transition even more traumatic, could be considered at higher risk of a further clinical deterioration in the first years of adulthood, and should need greater clinical care in order to obtain the best possible outcome in terms of quality of life, fundamental parameter to guarantee a good compliance to therapy in the future.

Data collected also show that main risk factors linked to a higher rate of surgery within the first year from transition can be considered the CD phenotype (particularly B2 and B3 behavior phenotypes), the number of biologics drugs assumed during the pediatric age, the clinical activity at diagnosis and the absence of an endoscopic or clinical remission.

An active disease at the time of transition has been already associated with an unsuccessful transition [16]. According to this, patients should complete transition to the adult center while in clinical remission or mild disease activity. Conversely, the transition of active patients should be rather delayed until the resolution of the acute phase, in order to avoid psychological traumatisms and to promote a greater confidence in the adult specialist and a good compliance with the therapy management [17].

Furthermore, it has been recently observed in an US cohort the absence of association between TRAQ scores and different measures of health [18]. In our cohort, instead, we found a significative positive association between TRAQ and SIBDQ questionnaires, highlighting the importance to assess a real readiness and demonstrating the association between patients’ transition readiness and higher HRQoL.

This fact gets even more important considering that we did not observe significant differences in terms of TRAQ mean scores among patients of different age, ant that we found more or less the same level of independence and awareness of disease within different groups, proving that transitions carried out at older ages do not improve readiness and quality of life score in significant way.

Our patients’ cohort expressed generally satisfaction about the transition process adopted, in particular about the opportunity to join combined pediatric-adult visits. Parents seem to still play a central role in patients’ lives and in their relationship with disease, especially for managing scheduled appointments, medications (including also keeping in memory of previous side effects or intolerance) and talking with providers.

This confirms the urgent need to structure educational programs during childhood, including also parents, in order to stimulate the acquisition by patients of a greater independence and capability of self-management.

Our study has some limitations, of which main ones can be considered the inclusion of two pediatric centers, with possible different therapy approaches, the single model of transition analyzed and the low percentage of children in remission enrolled between patients who carried out transition within the recommended age of 19 years.

The first limitation could lead to some biases related to the lack of homogeneity in the management and follow up, even no significant differences have been found in terms of short and long-term outcomes. Patients enrolled were similar in terms of age, and the same associations have been found in those who carried out transition in an active phase of disease, even if coming from different centers. On the other hand, our study could be considered a realistic model where patients with different backgrounds can converge to a single adult center through a standardized path.

In conclusion, our data support that mild activity of disease at transition and a high level of adolescent’s autonomy skills are the most important aspects of considering for transition and for assuring a better HRQoL in this difficult phase of care.