Following the diagnosis of inflammatory bowel disease (IBD) in children, transfer from pediatric to adult healthcare typically occurs some years after the initial diagnosis. This age-related aspect of the disease, as well as its increasing incidence, is probably the reason that much research on transition of care has been done in patients with IBD.

Though the terms transition and transfer are often used interchangeably, they have different meanings. Transition of care, much more than just transfer of care, does not concern only the patient, but also the caregiver and the providers (usually medical and nurse specialists) in both the pediatric and the adult healthcare system. Ideally, a transition coordinator should guide the patient, parents, and team in this process of building skills, gathering of knowledge, preparation for transfer of the adolescent’s care, organizing continuity of care, and reception in adult care.

In this issue of Digestive Diseases and Sciences, Khan et al. [1] have focused on transition readiness and barriers to transition in a cohort of “pre-transfer” patients aged 12–21 years. Patients were stratified by age into three groups: A (12–14 years), B (14–17 years), and C (17+ years). The authors used a generic self-report questionnaire, the Health Care Provider Transitioning Checklist (HCPTC), very similar to the Transition Readiness Assessment as supplied by Got Transition®, a US-based organization involved in improving the transition from pediatric to adult healthcare [2].

Three age-group dependent questionnaires were used, that can be downloaded as supplementary material.Footnote 1 Furthermore, questions (18 for group A and 24 for groups B and C) were categorized into three sections: Taking Charge (transition importance and confidence in the transfer to adult care), My Health (disease knowledge) and Using Healthcare (maneuvering in the healthcare system).

The authors report that with advancing age, confidence and maneuvering skills improve, as self-reported by the adolescents and young adults (AYAs) in their clinic. In contrast, there was no increase in knowledge of disease or medications. Apparently, and, at first read surprisingly, the center that performed the study did not have a transition clinic or transition program in place. Therefore, what the authors described seems to be the ‘natural course’ of transition readiness during the AYA years. In fact, what was assessed was not transition readiness, but actually transfer readiness. If in reality no transitional care was provided in this cross-sectional cohort, Khan et al. have shown that adolescents grow older, wiser and more ready by themselves while remaining in the pediatric healthcare system during the transitional years. Since the transition readiness questionnaires used are reporting the self-efficacy of the AYA, the answers to the questions reflect what they think they can do, but not what they actually do.

A notable point in this report is that the patients did not transfer to adult healthcare providers until 21 years of age. While this is not uncommon in the US, it is very different from the situation in European and in many other countries, where adolescents need to transfer to adult care at an earlier age, typically around 16–18 years [3]. Since the AYA’s daily life moves through extensive physical, psychological, and emotional changes with major shifts in family dynamics and peer pressure during years 16–21, postponing the transfer to adult care until after age 21 is perhaps quite sensible. Whether this transfer at an older age may obviate the need for a transition program is doubtful, as shown by Khan et al. [1] that, even in the older (17 plus) age group, 22 and 20% of responses were answered as “I need to learn” for the ‘My Health’ and ‘Using Health Care’ categories, respectively.

Khan et al. [1] thus emphasize the importance of ongoing transition support and education tailored to the individual needs of patients with IBD as they transition to adult care. In their discussion, the authors stress it is essential to recognize the barriers within the health care system that may hinder the transition process, such as improper coordination between pediatric and adult health care services or inadequate infrastructure. They conclude by providing practical recommendations for a smooth transition: development of age-appropriate educational materials, listing adult providers from which patients can choose, conducting repeated assessments of transition readiness, and the creation of joint pediatric-adult clinics as needed [1].

The finding from this research and the recommendations can easily be extrapolated to other health conditions. The good news is that our patients do grow older and wiser, and get more ready for transfer once they approach the age of 21. But can this really be believed?

Apart from the limitations mentioned by the authors (small sample size, design of the questionnaires, no information on disease type and activity), there is no information on the response rate or selection of patients. Adolescents are often not very motivated to fill in questionnaires. The responding patients may be biased to patients who are more responsive, adherent, and transition-ready, characteristics that may be more characteristic of the older age group, implying that in real-world practice, transfer readiness may be lower and may not increase at all with age. Furthermore, Huang et al. [4] showed that, in AYAs with IBD, self-report of transition readiness did not compare well with actual skills, as measured by a skills-based practicum, where patients were asked to answer open questions on disease type, medications, how to refill prescriptions, and providing their doctor’s name. Moreover, self-efficacy did not correlate well with the outcome of transition, as reflected by post-transfer attendance at the first and subsequent visits to the new, adult gastroenterologist, medication adherence, and patient satisfaction with the transition process [5]. Despite all this, yearly assessment of transition (or transfer) readiness is still of value since it increases the awareness of issues and problems that may hinder a successful transfer to adult care among patients, parents, and healthcare providers.

In a recent study from the Netherlands, van Gaalen et al. [6] used the Transition Readiness Assessment Questionnaire (TRAQ) [7], a validated and generic patient-reported tool in their AYAs with IBD and generated age-dependent reference scores. Though the patients in the Dutch study were a bit younger (and transferring at 18 years) and all attended a transition program, the results are in accordance with Khan et al. [1] showing an increase in transition readiness with age. It would be interesting to compare the natural development (as shown by Khan et al.) and the effect of a transition program on transition readiness (as in the van Gaalen study).

In conclusion, yearly assessment and ideally dashboard monitoring of all domains of transition readiness is helpful during the transition process since it supports both pediatric and adult healthcare providers in guiding individual AYAs with IBD toward independence and self-management. Monitoring its progress by repeated self-report may also stimulate skills development and promote increasing readiness in our young patients with IBD.