The importance of transitional care guidelines in Italy
Transitional care arises from the need to ensure the design and structuring of care pathways that ensure a smooth transition from pediatric age to adulthood. In recent years this need has emerged from the observation of two particular recent phenomena: a progressive increase in patients with chronic diseases in adolescence; a longer survival period of children with chronic diseases of various origin and / or symptoms, which – growing – require to be able to be inserted into the care system oriented to the adult.
There is currently no European consensus guideline for doctors working in this field, while at a local level in 2015 the Italian Society of Gastroenterology and in 19932 the North American Society of Gastroenterology, Hepatology and Paediatric Nutrition published two respective position statements1 about this item.
There is an age in which we move from pediatric care, characterized by the reception and accompaniment of the little patient and his family, to adult care, characterized by the direct doctor-patient relationship and the responsibility of the patient. It is not an age that can be defined precisely because it is different from primary care to hospital care, from region to region, from hospital to hospital and even between different wards of the same hospital. Adolescence can be considered a sort of middle ground, rich in peculiar health needs, but which the national health system does not seem able to intercept in a systematic way.
Families also play a fundamental role in the adolescent’s development, and the difficulties of a correct application of transitional care also affect them.
The regulatory references referred to for transitional care in Italy are the National Plan on Chronicity 2016 for transitional care in chronic patients, and the National Project called Transitional Care. The latter, currently being tested in some regions and supported by all the major Italian scientific societies, aims to carry out a modelling and standardization of the methods of transition from pediatric care to adult care in patients with chronic diseases and disabilities.
The areas of interest that should be most involved in the policy for the regulation of this passage of care are not only addressed to the improvement and standardization of clinical and organizational aspects, but also educational interventions (training of pediatric patients and adolescents), vocational training, organization of institutionalized awareness campaigns, as well as increasingly specialized research on the health of adolescents.
The transfer of a teenager from the paediatrician to the adult doctor is therefore an important moment for various reasons. It is a passage and, as such, it presupposes a separation on one side and an insertion on the other; what situations, what problems must or can be reported by the paediatrician in a letter of termination, in a sort of epicysis of 14 (or 16 in some cases) years of treatment? And, on the other hand, what news does the adult’s doctor (general practitioner, specialist) really need to start a trustful relationship with a newly registered teenager himself? These questions have been the subject of meetings and workshops in the paediatric field and, in particular, in that of general medicine, which will be discussed shortly.
HEALTHY TEENAGERS WITH ILLNESS. WHO IS THE TEENAGER’S DOCTOR?
The adolescent in Italy is currently assisted by both the family paediatrician and the general practitioner. The first can only take care of adolescents up to the age of 16 if they have a chronic illness or discomfort. On the care level, for specific reasons, we can say that the paediatrician is the teenager’s doctor:
- knows the pathophysiology of growth and puberty, nutritional needs and the various stages of neurocognitive and psychological development;
- knows the clinical history of the adolescent before he becomes one and his personal experience;
- built up a relationship of trust with the parents and with the boy himself;
- deals with prevention and health education. These reasons have also been recognized by international and national bodies such as the WHO, the International Convention on the Rights of the Child and the Maternal and Child Objective project, which indicate that the paediatrician is the most suitable professional to deal with adolescents.
As far as morbidity is concerned, the specific medical problems of adolescents include dermatological problems (acne), pubertal development disorders, hirsutism, polycystic ovary syndrome and menstrual cycle disorders, varicocele, phimosis, sexual dysfunction, sexually transmitted diseases and, increasingly, psychological problems (depression, anxiety disorders, suicidal ideation, autistic spectrum disorders). On the medical level, we must also consider the increased incidence of chronic diseases due to improved diagnosis and treatment, with increased survival of diseases previously unsuccessful in childhood (cystic fibrosis, congenital heart disease, spina bifida). Chronic diseases are a topic of great importance in adolescence, as chronic illness can interfere with the achievement of what we can consider the “objectives” of adolescents, such as the acquisition of identity, the search for physical and psychological independence, the acceptance of their body image and sexuality.
Transition to adulthood is a complicated process for most Adolescent and young persons (AYP) and is particularly so where AYP have chronic illnesses and ongoing health needs. The transition process has increasingly been recognised as covering a vulnerable period where unaddressed healthcare needs may have long-term consequences3. Inadequate transition arrangements have been associated with a number of adverse outcomes over a wide range of medical conditions including diabetes4,5, heart disease6 and haematological disorders7. These consequences include delayed and inappropriate care, poor communication with AYP and their families, as well as emotional and often financial stress for patients, their families and healthcare systems. Following solid organ transplantation, inadequate transition has been associated with worsening adherence8, increased graft loss9 and higher mortality8.
- Elli L, Maieron R, Martelossi S, et al. Transition of gastroenterological patients from paediatric to adult care: A position statement by the Italian Societies of Gastroenterology. Dig Liver Dis 2015;47:734–40.
- Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993;14:570–6.
- Tuchman LK, Slap GB, Britto MT. Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev 2008;34:557–63.
- Nakhla M, Daneman D, To T, et al. Transition to adult care for youths with diabetes mellitus: findings from a Universal Health Care System. Pediatrics 2009;124:e1134–41.
- Kipps S, Bahu T, Ong K, et al. Current methods of transfer of young people with Type 1 diabetes to adult services. Diabet Med 2002;19:649–54.
- Wray J, Frigiola A, Bull C. Loss to specialist follow-up in congenital heart disease; out of sight, out of mind. Heart 2013;99:485–90.
- Andemariam B, Owarish-Gross J, Grady J, et al. Identification of risk factors for an unsuccessful transition from pediatric to adult sickle cell disease care. Pediatr Blood Cancer 2014;61:697–701.
- Annunziato RA, Emre S, Shneider B, et al. Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatr Transplant 2007;11:608–14.
- Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 2000;14:469–72.