Continuum of care for children and adolescents within a European setting: a patient-centred approach

Ambra Righetti1,2, Loredana Nulvesu1, Lucia Taramasso1,
Federica Portunato1, Piero Cai3, Giovanna Ferrandes3,
Mauro Giacomini4, Barbara Giannini4, Claudio Viscoli1 and
Antonio Di Biagio1
1Infectious Diseases Department, Care and Research-based Scientific Institute, University Hospital (IRCCS AOU)
San Martino Healthcare Cancer Institute (IST), Genoa, Italy; 2New Cross Hospital, Royal Wolverhampton NHS
Trust, UK; 3Psychology, IRCCS AOU San Martino-IST, Genoa, Italy; 4Robotics, Informatics and Bioengineering,
University of Genoa, Italy.

Abstract
Background: Strategies to optimise the retention of children and adolescents living with HIV face key barriers including individual, institutional and systems barriers. Many interventions to improve retention in care are defined in literature.
Methodology: This is a descriptive study of all HIV-infected paediatric patients in care at the adult unit of infectious diseases of IRCCS AOU San Martino-IST in Genoa, Italy. To improve retention in care, a dedicated day with a patient-customised environment was established and a multidisciplinary approach was adopted. Psychological support and counselling was provided as well as memory aids, such as texts and phone calls. Self-management and educational activities were encouraged. Adherence-support devices were used and treatment personalisation was implemented. Laboratory and pharmacology data was automatically updated from an electronic health record in a structured query language (SQL) database, accessible with a web interface.
Results: Of the 48 HIV-infected paediatric and adolescent patients who received care, four (8.33%) patients were aged 18; mean age was 22.3 years; and 42 (87.5%) have been retained in care. Six (12.5%) were lost to follow-up (four transferred to another hospital in Liguria and two died). Thirty-seven (88.1%) patients had HIV-RNA viral loads >50 copies/ml. All patients were on combined antiretroviral therapy and 37 (88.1%) regularly attended appointments with an average interval of 4–5 months. Thirty-eight (92.8%) were aware of their diagnosis and 34 (80.95%) benefited from the dedicated day.
Conclusion: This study describes the experience of retention in care of children and adolescents living with HIV in an adult HIV clinic in Genoa. Motivational intervention through self-interview could be used to further improve retention in care.
Keywords: HIV, adolescents, retention in care, children and antiretroviral therapy