Is the transition possible?

Abstract

T he long-term survival and higher quality of life for children with severe congenital malformations is a novelty of the in the last 30 years. Some reconstruction techniques are quite recent: the magnifying cistoplastias started to be used in children in the 70s; the modern techniques of reconstruction of the anorectal malformations were proposed in the 80s; the life expectancy of patients with myelopathy increased from the second to the fourth decade since the 70s. The support treatment for severe diseases has improved greatly. Children with posterior urethral valves survive today without urinary diversion; children with hypoxic-ischemic encephalopathy reach adulthood thanks to the best physical therapy resources and nutritional and respiratory support.The Children and Adolescent Statute (Law 8069/ 90) bequeathed the care of patients younger than 18 years of age to pediatric specialists, but there are problems. The logistics of caring for adolescents is not (or should not be) the the same one used in the treatment of infants and children before puberty. Problems related to privacy and autonomy need to be dealt immediately. In a children's ward separation by gender is unnecessary and common toilets for all patients are acceptable. In a teenage ward this care is essential for respecting the individual and preventing problems caused by the attraction between patients of different genders, who are emotionally and legally immature, or by the physical exposure during procedures, including the simple physical examination and daily dressings change. Issues related to autonomy and decision-making rights on conducts have a different approach in children (in which they have a more informative character, the legal responsible having the burden of decision) and older adolescents, who are able -and legally supported -to participate more effectively in the decisionmaking. process Despite the law prescription, and from the managerial point of view, an undisputed control mechanism, it is difficult for a 16-year-old patient in full postpartum, breastfeeding her baby, to accept being admitted on a typical pediatric ward for a cholecystectomy; she will identify much more with the accompanying mothers than with the other patients. Or a 17-year-old lad, with STD due to promiscuous sexual activity, being treated at an urology clinic for pediatric patients amid prepubertal children who enjoy drawing and painting portraits of princesses and superheroes. I have lived both situations and it's hard not to admit the ethical, logistical and technical conflicts involving them. Without a proper support structure, around 1/5 of care in quaternary specialized outpatient pediatric urology are for teens older than 14 years and adults (unpublished personal data), divided between patients in late follow-up (2/3 ) and initial visits, often involving typical adult diseases (STDs, varicoceles).Another problem, this one related to the long survival of patients with malformations, relates to transition of their care to adult medical professionals, which ...