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Название: Transition of Care

Автор: Группа авторов

Издательство: Ingram

Жанр: Зарубежная психология

Серия: Endocrine Development

isbn: 9783318061437

isbn:

СКАЧАТЬ participation in care, self-efficacy, communication, decision-making) [1013].

      Transfer is, in general, a single occasion event through which the young patient is transferred from pediatric to adult care services. Examples of transfer-related interventions are the following: writing a transfer letter, developing a transfer plan, writing a health summary and coordinated transfer of care [9].

      The Number of Young People with Chronic Illnesses Is Increasing

      Challenges Coming from the Pediatrician

      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 СКАЧАТЬ