Transition of Care. Группа авторов
congenital heart disease will survive into adulthood [16]. Furthermore, the prevalence of chronic illnesses such as asthma, diabetes (type 1 and 2), and obesity has increased. In the UK, 1 in 7 young people (15%) aged 11–15 years report having been diagnosed with a long-term medical illness or disability, such as asthma, diabetes, epilepsy, cancer, or physical or mental impairment [17]. This means that more children who need management of these conditions are moving from child to adult services. This may be a burden for the department of adult medicine if not enough resources are dedicated to these cohorts of patients undergoing transition of care from the pediatric system to the adult medicine one.
Challenges Coming from the Pediatrician
Transition may be a difficult process for the pediatrician who has been engaged in taking care for a long time, sometimes from birth, of the child and family. Therefore transition may be seen as breaking strong links. This rupture may be even more difficult when some problems are not solved, such as cognitive disabilities, end of growth, or puberty. In relation to the latter, for the pediatric endocrinologist, transition can be defined from physiological changes that occur during the period from the end of puberty to the attainment of an adult phenotype and need to be achieved to implement transition. The start of transition may be considered to be when patients reach Tanner stage 5, reported to occur at a mean age of 14.7 ± 2.2 years in boys or 14.0 ± 2.4 years in girls [18]. It can also be considered to be when patients have reached their adult height, at the mean age of 16.8 ± 2.2 years in boys and 15.2 ± 2.0 years in girls [18].
The pediatrician will also have to overcome several fears: the feeling that the endocrinologist for adults may not master specific problems of the child’s condition; her/his scientific interest for the condition of the child. She/he may be willing to study the natural history of the condition as well as determine the health status of the young adults to be able to perform an autoevaluation of her/his own practice. Those fears will have to be overcome in order to be able to work in good harmony with the endocrinologist for adult patients and be able to design together studies on long-term follow-up.
Challenges Coming from the Adolescent
The adolescent may feel the fear of the unknown, of losing a privileged relationship. She/he may have a feeling of abandon. The adolescent may also fear that her/his person will not be at the center of the relationship with the endocrinologist for adults. In simple words, from being “Marc” the person who happened to have a craniopharyngioma, he will fear to become the “craniopharyngioma guy,” where his person is hidden behind his condition.
Some adolescents phrase the transition process like this : “This move is like moving out of the house, because you grew up with these people” – “Will the physician for adults understand how much my person is affected by this condition (cystic fibrosis)?” – “Will the physician for adults understand my pain (sickle cell anemia)?”
These fears need to be expressed during the consultations with the pediatrician. The latter should obtain and give the assurance to the adolescent that he will work with a physician for adults in good confidence and with a physician who has enough empathy to “understand the person beyond the disease.”
Challenges Linked to the Disease Itself
The challenge may also come from the nature of the disease itself. In endocrinology, rare disorders are often taken care of. Therefore the numbers of endocrinologists for adults who are able to master the care of such disorders may be low. This is even more difficult for metabolic disorders, which are even rarer; there is still a need to have specific adult medicine subspecialties with staff trained to take care of young adults (e.g., nephrologists or hepatologists for metabolic disorders). This is certainly an area where a structuration of the rare disorder plan to be able to have a reference center, at the national and international levels, improves the situation. The examples of rare disorder plans such as those in Holland, France, and other countries (see the website FIRENDO for the rare disorder plan for endocrine disorders in France: http://www.firendo.fr/accueil-filiere-firendo/) and now the ENDO-ERN (European Reference Network for Rare Endocrine Disorders: http://endo-ern.eu/) recently endorsed by the European Community have paved the way for care improvement and notably transfer, as organizing transition of care is one objective of those health plans.
For other disorders, such as diabetes mellitus, there may be or may have been different concepts of care between pediatricians (e.g., sometimes keeping the adolescent patients on 2 injections a day) and diabetologists for adults (often eager to put the adolescents on a basal/bolus scheme or on insulin pump therapy). This can be solved by an upfront discussion between the 2 teams as, as a rule, no therapeutic changes should be made just at the time of transfer.
Challenges Coming from the Parents
The challenges coming from the parents are of a different nature. They share the fear of their children, regarding the future physician who will take care of their children, but also the autonomy of their adolescent affected by a chronic condition. For long years, they have been the “guardians” during daily life of the care given to their children. They shared the fear of acute events and were always there to protect their children from those. They played an active part in the dialogue with the pediatrician, whereas the physician for adults will mainly talk to the patient. And nevertheless they will still be a very active and important support of the affected person.
This is so important that the only way is to accept the parents during the transition process and for the first consultation(s) with the physicians for adults. This is how again an attitude of understanding and empathy will allow a successful transfer and transition.
The Role of the Pediatrician: To Prepare the Adolescent and Find the Referral Physician for Adult Medicine
The role of the pediatrician is to prepare the adolescent for transition, making 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