it progressively clear that she/he will not be the referral physician, and that this idea should be accepted by the young person affected with the chronic condition. One way to pass on the information is to see the adolescent alone, when she/he and the parents agree. This, by itself, conveys the message of a change from the usual consultation that the adolescent had as a child, not being alone with the pediatrician. The “triad” (child, parents, pediatrician) is changed to a “diad” relationship with the pediatrician, as will happen later with the physician for adults.
This process will also convey a message that autonomy is now important to prepare the transition.
The role of the pediatrician is then to find the right physician for adults, for the adolescent she/he has known for a long time. She/he should take into account the referral physician according to the disease in question but also discuss whether the adolescent, who has now become pubertal, would choose a female or male physician (if possible in the department of adult medicine). In any case the pediatrician should identify a physician who is willing to invest time in the process (these consultations for transition are often longer than the usual ones).
Some documentation of the medical history and treatments should be shared with the adolescent and the physician for adults. This is often a good time to read before transition those documents with the adolescent to avoid any feeling of secrecy from her/him.
This process of transition is needed as the pediatric milieu is not the best to fully develop autonomy, the social and professional integration of the young adult. In general, the pediatrician is more involved in growth, puberty, and familial relationships whereas the physician for adults will also focus on fertility, autonomy, and profession.
It is also very important for the physician in adult medicine that feedback on the evolution of the young person should be given to the pediatrician.
The Right Moment of the Transfer?
We believe that age, often an administrative criterion, is not the best and only factor to decide upon transition of care [19]. The right moment is dependent upon the maturity of the young person. Usually it will be when growth and puberty are achieved, and also when a school cycle terminates, e.g. at the end of secondary school. Often this is around 18 or 19 years of age, as was found in a survey of young patients affected by endocrine conditions and also in the case of growth hormone-deficient children [19, 20] (Table 1).
Table 1. Factors either facilitating or limiting the chances of a successful transition
| Facilitating factors | Limiting factors |
| Linked with the transition process | |
| Meeting with the team of adult medicine, before and during the process of transitionEarly information/discussion about the path to transition before transfer (names of the members of the adult medicine team, practical information on the modalities of the transfer…) during outpatient clinics and with written documents (flyers…)Identification of the specialist for adults the adolescent is referred toLogistic help to organize transfer and then follow-up in the adult medicine department (transition coordinator, dedicated number to take appointments)The young person should play an active role in the processTherapeutic education sessions (exchanges of experience with peers) | Absence of preparation or late (just before transfer) preparation in the pediatric departmentNo identification of a referring physician in the department for adult medicineDifficulties to take appointments and to contact the department for adult medicineToo early transfer |
| Linked with the pediatric department and the department for adults | |
| Formalization of the transition path between the two departmentsSpaces dedicated to the transition phase:“La suite” at Necker University Hospital1 Transcend project at Pitié-Salpêtrière University Hospital2 | Lack of communication between the two departmentsImportant differences in the treatment protocols between the pediatrician and the physician for adult persons |
| Linked with patient history | |
| Psychosocial challenges and daily life constraints (working hours, family…) in competition with the good care of the chronic conditionDifficulties with health insuranceNonoptimal follow-up in pediatricsPoor socioeconomic background | |
| Adapted from Garvey et al. [24]. 1 https://www.youtube.com/watch?v=RR7uLSo3r4M. 2 http://pitiesalpetriere.aphp.fr/transend/. | |
Transition should not be associated with a feeling of punishment by the young person with a chronic condition, but in contrast be felt as a step towards autonomy and adult life. This is why therapeutic education should also be part of the transition plan. Programs have been designed, independently of the underlying endocrine conditions, to target common themes in relation to transition [21]. One program currently used in the department of endocrinology for adults at the Pitié-Salpêtrière Hospital is based on a triple approach: the first is based on the description of the medical history using paper boards with multiple images reinforcing the ability of the young adult in describing his own story; the second approach helps the patient to find his own landmarks in the new hospital or the new department of medicine; finally a singular and particular approach has been developed to build a program for the near future and to conciliate both desires and wishes on the one hand and the consequences of the chronic disease on the other. One limiting factor concerning such a project is the current absence of a complete long-term evaluation of its impact on health status.
Fig. 1. Schematic representation of the constellation of factors influencing the success of transition.
Conclusions for a Successful Transition
The process of transition should start in the pediatric setting (Fig. 1), when the patient is around 11–12 years old, and should involve sessions both with the child alone and together with the parents. It is suggested that one way to determine the understanding of the patients was to get them to explain their condition to their relatives. It may also be useful to provide mentors for the patients, who are older patients with the same condition and who can provide explanations from a different perspective. While it should be a partnership with patients, the children need to establish self-management. However, the transition team must be able to identify children who are at risk of life-threatening conditions, such as adrenal insufficiency or ketoacidosis, as young patients do not necessarily feel ill and may not recognize risks involved in not managing the condition correctly.
Few studies have associated a well-planned transition process with a better quality of life and a better controlled disease. One of those, which used 21-hydroxylase deficiency to confirm this, is widely described in a dedicated paper by Bachelot et al. [22].
Beyond
