Paediatric to adult transition programme in inflammatory bowel disease, why do we need it?

Impact of inflammatory bowel disease (IBD) in the paediatric population

The complexity involved in managing patients with inflammatory bowel disease (IBD) is a present reality. At the same time, however, care must be standardised in these diseases in order to provide equitable, quality healthcare. A particular scenario, but one of great relevance in clinical practice, is the transition of our patients from paediatric to adult age.

In recent years we have witnessed an increase in the incidence of IBD in the paediatric population.¹ In addition, this group of patients has a series of unique features that are determined both by the characteristics of the subject and those of their environment. During this vital phase of childhood and adolescence, essential phenomena such as growth, education and emotional and sexual development take place, which, together with the psychological and family impact caused by the diagnosis of a chronic disease, pose a challenge for all healthcare professionals involved in its management.

The term transition should refer to more than simply transferring a patient from a paediatric to an adult unit. It should be a planned and anticipated process that enables and facilitates continuity of care from a child-centred to an adult-oriented health system. This programme should be flexible and tailored to the needs of each patient and their family so that they can adapt appropriately and become autonomous in the management of their disease.

What should the objectives of this transition be?

With this established process of transition, we must try to ensure the continuity of care that the paediatric patient has received so far, but at the same time we must offer tools for the adolescent to acquire skills such as autonomy and responsibility for self-care. It is important during this phase to normalise psychosocial development and improve self-confidence, to plan long-term goals and healthy habits, all aimed at improving disease monitoring and adherence to treatment. One relevant aspect is vaccination during the paediatric age, which must be in accordance with the current schedule and which must be assessed to confirm correct immunisation.² Ultimately, the transition must be a phenomenon carried out in an appropriate environment and that is sufficiently careful to avoid loss to follow-up and mistrust of the new adult medical team.

There is evidence showing how a structured transition programme has a positive effect on clinical outcomes. The BUTTERFLY study by GETECCU (Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa [Spanish Working Group on Crohn's Disease and Ulcerative Colitis]) and SEGHNP (Sociedad Española de Gastroenterología, Hepatología y Nutrición Pediátrica [Spanish Society of Gastroenterology, Hepatology and Paediatric Nutrition]) on the benefits of a structured transition programme in patients with IBD was recently published.³ This is a national, retrospective, multi-centre study that aimed to assess the impact of transition on IBD outcomes. Two groups of patients were compared: those who transitioned within a well-structured programme versus those who were not part of an established transition programme. Clinical outcomes at one year were compared in terms of occurrence of flare-ups, need for hospital admission, surgery or any change of treatment per flare-up.

A total of 278 patients from 34 Spanish hospitals were included; 67% of patients from 22 hospitals transitioned as part of a structured programme.

One of the main results of the study was that worse clinical outcomes were identified among patients transferred without a previously established programme (43% vs 27%, P = .005), such that these patients were more likely to have a flare-up (36% vs 22%, P = .018) and had a greater need for hospitalisation (10% vs 3%, P = .025). Predictors of worse outcomes in multivariate analysis identified inflammatory activity at the time of transfer, BMI < 18.5 and corticosteroid treatment at the time of transition.

When should the transition take place?

Another important aspect is to understand the most appropriate time to make the transition and, as we have previously mentioned, in this sense it is crucial to be aware that it is not a one-off event but an evolutionary process. Moreover, this does not necessarily apply to all patients, and chronological age should not be the determining factor. The patient and family should be informed of this process and its benefits in advance, and it should be proposed during an optimal situation of clinical, emotional and social stability (Table 1).^4,5 It is also necessary to take into account the constraints of each hospital and to adapt it to its organisation.

Table 1.

Ideal time for transition.

Determining factor	Ideal
Chronological age	Between 14 and 18 years old (extendable to 21 years old)
Health care	Independent of parents
Decision autonomy	Ability to make informed decisions
Preparation	Understanding of the disease
Willingness	Feels comfortable with the adult team
Availability of adult specialist	Special focus on IBD
Disease status	Clinical remission
Treatment adherence	Adherent, including in remission

This entire transition comprises a series of barriers that will determine the success of the programme.⁶ We must bear in mind that we are transitioning from family-centred care, where the patient plays a passive role and does not have much independence, to a patient-centred system, where the patient must be well informed about the characteristics of his or her illness and acquire autonomy to make individual decisions.

Gastroenterologists treating adult patients face structural and organisational barriers. In many cases there is a lack of time and space: there is a shift from very long consultations to more limited and shorter ones. We do not have specific training to manage the developmental aspects of growth and key psychosocial aspects of adolescence. In addition, we often lack detailed information about the characteristics of the inflammatory disease and its previous treatment history. We are also dealing with a family that can be very demanding and lacking in confidence in this transfer, which often leads the gastroenterologist of adult patients to perceive the transition differently and to consider it less important than the paediatrician. It is therefore necessary to identify all these barriers and try to overcome them.

How do we develop a transition programme?

Achieving an optimal transition programme requires not only the participation of two physicians (paediatric and adult gastroenterologist), but also the involvement of a well-informed and consenting patient and family members, as well as a nursing team. Ideally, a psychologist and a social worker can provide training and adaptation skills to facilitate the patient's integration into the new healthcare environment. All parties in this scenario must be convinced of the beneficial outcomes of the process. And for this to work properly, characteristics such as team spirit, trust, willingness and communication between those involved are essential. We must all share common goals in order to achieve adequate disease control.

There is no one-size-fits-all model of transition, and we must find the one that best suits our workplace. The most suitable model is considered to be where the entire team involved in paediatrics and in the adult setting is prepared in advance, in a multidisciplinary manner, and a consensus is reached on the treatment plan and the follow-up schedule. Subsequently, a joint transition consultation takes place in which the paediatrician introduces the patient to the adult team. This consultation can be done in the paediatric or adult setting. Subsequently, follow-up would be done in the adult setting. A series of suggestions are recommended for each of the parties involved in the process and to ensure its success (Table 2).⁷

Table 2.

Recommendations for those involved in the transition process.

For the paediatric gastroenterologist	• Awareness that transition is an ongoing process that can begin as soon as IBD is diagnosed
	• Ask the patient and family about their expectations around the transition
	• Provide patients with information about their IBD and treatment strategy
	• Consensus on a written transition plan with the patient and family
	• Explain the differences between paediatric and adult care
For the adult gastroenterologist	• Be sympathetic to the patient and his/her family and their unfamiliarity with the new environment
	• Work with the paediatrician beforehand and prepare for the transition
	• Have advance knowledge about IBD, the treatment plan and the patient's experience of the disease
	• Educate the patient about the new adult care system
	• Assess the longer duration of the first few consultations
	• Accept that parents want to continue to play an important role
	• Provide measures to promote patient autonomy
For the patient	• Understand his/her IBD (type of IBD, location, EIMs, name of his/her paediatrician, etc.)
	• Hospitalisations (date, reason for admission, etc.)
	• Surgery (date, indication, type of surgery, etc.)
	• Complications of his/her disease or treatment (fistulas, infections, etc.)
	• Treatment (type of drug, dosage, current and previous)
	• Know how to contact healthcare professionals if there is a flare-up
	• Schedule his/her own visits and reminders
	• Know which drugs are contraindicated during pregnancy
	• Discuss contraception and family planning issues

Conclusions

The impact of a diagnosis of a chronic disease such as IBD at an early age merits the implementation of a structured transition process that facilitates continuity of care from paediatrics to the adult setting. All parties involved in this process must be convinced of the benefits of the process and acquire a set of skills that allow them to be sympathetic to the adaptation to the new healthcare environment. Although there is no single model, we must strive to create the model that best suits our working environment, with the aim of providing better quality care and the opportunity for a more favourable patient outcome.

Conflicts of interest

The authors declare that they have no conflicts of interest with regard to the drafting of this manuscript.