Disease disclosure, treatment adherence, and behavioural profile in a cohort of vertically acquired HIV-infected adolescents. NeuroCoRISpeS study

ABSTRACT

Advances in care and antiretroviral treatment, improved life expectancy and quality of life in children with perinatally-acquired human immunodeficiency virus (HIV) infection. There is increasing interest in the chronic effects of growing up with HIV. The aim of this study was to assess the psychosocial, emotional and behavioural functioning in a cohort of perinatally-acquired HIV-infected adolescents. Data were obtained through semi-structured interviews and the Strengths and Difficulties Questionnaire (SDQ) for emotional and behavioural disorders screening. Results: A total of 95 patients (58% women) were assessed with a median age of 15 years (11–19.1) and a median age at diagnosis of 1.7 years (0–12.2). The median CD4 count, at the inclusion, was 626 cells/mm³ (132–998), with 34% (10–52%). Viral load was <50 copies/ml in 72% of patients. Eighty-one per cent knew their diagnosis and optimal adherence was achieved in 53%. Passive coping was reported in 58.4% of the adolescents. Only 7.7% of teenagers had a complete and adequate knowledge of their disease and only 18.2% had shared it with their friends. Six unwanted pregnancies occurred (11% of women). Most of them (90%) attended school but 60% had been held back one or more school years. Overall, SDQ scored a risk of behavioural and emotional problems in 24.5%. The report of behaviours associated with hyperactivity was high in 14.9% of the population and borderline in 18.1%. Adolescents with encephalopathy accounted for 44% of those whose total scores fell in either the abnormal and borderline ranges for emotional difficulties (p = .038). Conclusion: Perinatally-acquired HIV-infected adolescents showed significant psychosocial and behavioural health risks that should bring attention to prevention and health care programmes. An earlier disclosure to children could favour a better psychological adjustment and a better treatment adherence. Future studies are needed to assess the relationship between vertically acquired HIV-infection and hyperactivity.

KEYWORDS:

• HIV
• vertical transmission
• psychosocial
• adolescence
• disclosure
• adherence

Additional information

Funding

This work was supported by FIPSE under grant number [24691/07], “Metabolic and psychological evaluation of adolescents with HIV infection due to vertical transmission”; Fundación Mutua Madrileña under grant number [2012/0077], “Cognitive and psychological evaluation of a cohort of HIV infected children and adolescents”; and Gilead Fellowship under grant number [2013/0071], “Academical achievement and neurocognitive profile of a cohort of HIV infected children”. CoRISpeS-Cohorte de Madrid (Pediatric HIV Infection National Cohort) is included in the AIDS Research Network (RED-RIS) since 2008. RD 12/0017/0035. RD 12/0017/0037. RIS-EPICLIN-12/2012. Also was supported by FIPSE (Nº: 36-0910-10) titled “National Cohort of Pediatric HIV infection CoRISpe”.