A study on the mortality rate of young people diagnosed with HIV due to perinatal transmission once they have crossed over to adult healthcare in Spain has been recognized by the European Association of Paediatric Infectious Diseases (ESPID). Specifically, it has been awarded the PIDJ award, chosen annually among all the articles published in The Pediatric Infectious Disease Journal (PIDJ), the official journal of the association. Dr. MªAntoinette Frick, physician of the Pediatric Infectious Pathology and Immunodeficiency Unit of the Vall d'Hebron University Hospital and researcher of the group: Infection in the Immunocompromised Pediatric Patient of the Vall d'Hebron Research Institute (VHIR), has been one of the authors of the study. Dr. M.A. Frick has coordinated since 2014 the node 2 (belonging to Catalonia and Balearic Islands) of the state network of pediatric HIV (CoRISpe) and actively participates in the FARO project (characterization of vertically HIV-infected young adults transferred to adult units).

Mortality among young people with HIV due to perinatal transmission (infected during gestation, delivery or breastfeeding) increases significantly after adulthood. During adolescence (between 14 and 19 years of age), this group has an average of 0.38 deaths per 1,000 cases per year, an incidence slightly higher than that of the total population of the same age group (0.19/1,000). Even so, during subsequent periods, the mortality rate in the group soars to 2.54 deaths per 1,000 cases from ages 20 to 24 and to 6.88/1,000 from 25 to 29, while the increase in the general population is significantly more moderate, 0.27 deaths per 1,000 persons and 0.31/1,000, respectively. The study analyzed the clinical records of all pediatric patients with perinatal HIV treated from 2009 to 2019 in Spanish hospitals to determine the causes of this increase in mortality.

A total of 651 patients made the transition from pediatrics to adultcare. Of these, 40% were lost during or after the switch either due to a change of country, change of address or unknown causes. Of the 401 who could be monitored, 14 (3.5%) died as a result of the disease. In all cases, it was identified that the main reason for death was not lack of treatment efficacy but irregular treatment adherence. The lack of consistency led to an uncontrolled progression of the pathology and the development of different infections or associated diseases.

The analysis of the 14 case reports found some points in common. On the one hand, difficulty in maintaining the treatment already at pediatric age, (in fact, only one had a non-detectable virus load at the time of transfer), a situation that worsened with the transition to adulthood. On the other hand, there was a prevalence of mental health problems, 50% had a diagnosis for these pathologies, which made the adherence to treatment difficult. The only exception to this irregular follow-up was when one of the patients became pregnant. During all the pregnancies that occurred, there was a strict adherence to the medication. In total there were five births and no cases of mother-to-child transmission. Once this period was over, the patients returned to their usual pattern of behavior.

In recognition of the PIDJ award, Dr. Arantxa Berzosa, the principal researcher of the study, presented the findings during the ESPID annual meeting on May 9-13th in Athens. The main one was the need for multidisciplinary units to accompany perinatal HIV patients during their development and transition, especially in complex social situations and if there are added mental health problems. The aim is to improve their hospital follow-up and thus obtain a greater maintenance of their treatments and, therefore, reduce the mortality rate.

Vall d'Hebron has been working for years along these lines, not only attending patients medically before and during their transition to the adult unit, but also psychologically and socially. The "Som'hi" program accompanies the patient for almost 10 years: from 12 to 21 years old. During this period, the Committee for the Transition from Adolescence to Adulthood is in charge of coordinating the pediatric and adult health professionals. Each individual is assessed on a case-by-case basis, depending on the pathology and its complexity, in order to establish the best way to manage the transition process. The project was created to empower teenagers to take responsibility for their pathologies and reduce the risks during the transition process from a child- and family-centered health system to an adult-oriented one.