Transition of Care. Группа авторов

Чтение книги онлайн.

СКАЧАТЬ participation in care, self-efficacy, communication, decision-making) [10–13].

      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

The number of young people with chronic illnesses and disabilities entering adulthood, who may be in need of support services to achieve their physical, social, and psychological potential, is on the increase. This includes an increasing number of children with chronic diseases that require life-long management, who were not previously expected to reach adulthood. For example, from 1982 to 2007, the proportion of individuals with cystic fibrosis achieving adulthood (older than 18 years of age) increased from 27 to 56% [14]. It is estimated that children born today with cystic fibrosis will survive into their fifties [15]. Currently, almost 90% of children with 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 СКАЧАТЬ