Abstract

ObjectivesAs the global access of antiretrovirals for HIV-infected infants improves, so the body of perinatally HIV-infected adolescents (PHIVA) grows. The neurological and physical complications of HIV, both in children and in adults, are well established, however there is a paucity of data pertaining to PHIVA, a group of people who have had a lifetime exposure to the virus and to antiretrovirals. There has been a resounding call for further research in this area, as well as for the development of policies and programmes for this population. The aim of this study is to determine the physical sequelae in PHIVA and to propose a model of care for this population.MethodsThrough interviews with PHIVA, the perceived physical challenges will be established. Thereafter a cohort study with age-matched participants will determine if PHIVA have any limitations in fatigue, endurance, motor function and muscle strength, body mass index, peripheral neuropathy, level of disability and quality of life. Using these results, a model of care will be proposed through the nominal group technique with both PHIVA and clinicians working in HIV and adolescence.

Highlights

  • Current data shows that AIDS-related deaths have declined by 48% from 2005 to 2016 [1], the human immunodeficiency virus (HIV) remains the second leading cause of death in adolescence globally [2] and the leading cause in Africa [3]

  • Thereafter a cohort study with age-matched participants will determine if perinatally HIV-infected adolescents (PHIVA) have any limitations in fatigue, endurance, motor func‐ tion and muscle strength, body mass index, peripheral neuropathy, level of disability and quality of life

  • In 2016 there were an estimated 2.1 million adolescents aged 10–19 years living with HIV, with 84% living in sub-Saharan Africa [3] and perinatal HIV transmission forms the majority of infection route, the specific number of PHIVA is unknown [4]

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Summary

Introduction

Current data shows that AIDS-related deaths have declined by 48% from 2005 to 2016 [1], the human immunodeficiency virus (HIV) remains the second leading cause of death in adolescence globally [2] and the leading cause in Africa [3]. Some of the established challenges that children and adults with HIV face are peripheral neuropathy, fatigue, decreased endurance and muscle strength, motor function impairments and body mass index changes [12–21]. Concerning these challenges, there is little data available on what PHIVA face. With the advent of ART and its increased availability to perinatally infected HIV positive children, there is Comley‐White et al BMC Res Notes (2019) 12:62 a growing number of adolescents living with HIV and ART use since birth, facing a lifetime of chronic illness management [22–25], the consequences of which are still being established [4]. Of the studies that have been done on neurodevelopment in PHIVA, the majority are from resource-rich countries, and not from resource-scarce countries (where PHIVA are more likely to face running a child-headed household; have poorer access to health care; face poverty, deprivation and opportunistic infections [26]), where there is the highest prevalence of PHIVA [26]

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