Abstract

ObjectiveThe objective of this study is to review clinical outcomes of recommendations made by a multidisciplinary paediatric virtual clinic (PVC) for complex case management of paediatric HIV as a model of care within a tertiary network.DesignA retrospective review of the clinical outcomes of paediatric and adolescent (0–21 years) referrals to the PVC at St. Mary's Hospital, Imperial College Healthcare NHS Trust, London was performed between October 2009 and November 2013.Results234 referrals were made for 182 children from 37 centres, discussed in 42 meetings (median age 13 years, IQR 10–15 years). Reasons for referral included virological failure (44%), simplification of the current regimen (24%) and antiretroviral drug complications (24%). At latest follow-up, PVC advice had been instituted in 80% of referrals. Suppression following virological failure was achieved in 48% following first referral and 57% following subsequent discussions and was maintained in 95% of children referred for regimen simplification. Following advice, dyslipidaemia resolved in 42% and liver function normalised in 73% with biochemical hepatitis. Adherence support aided resolution of viraemia in nine children and 12% of referrals resulted in additional support, including psychology, social services and mental health input.ConclusionsCombined multidisciplinary virtual input with adult expertise in resistance and newer agents, paediatric knowledge of pill swallowing, childhood formulations/weight banding and parental support, assists complex treatment decision making in paediatric HIV infection. The Virtual Clinic model could be applied to the management of other rare complex diseases of childhood within a clinical network.

Highlights

  • Perinatally infected infants and children are surviving to adulthood with life-long HIV infection and long-term exposure to highly active antiretroviral therapy (HAART)

  • The London HIV Consortium Paediatric Sub-Group established networks for the care of children infected with HIV in 2004, followed by the setting up of paediatric HIV networks for children outside London in the Children’s HIV National Network (CHINN) review of 2005

  • Reasons for advice not being followed included two deaths in children in Eastern Europe before changes could be implemented, two UK children lost to follow-up despite social services involvement, additional rereferral for ongoing adherence and family support. This retrospective study has demonstrated the diversity of referrals to our multidisciplinary virtual clinic for discussion of complex case management for children and adolescents living with HIV from a wide geographical region

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Summary

Introduction

Infected infants and children are surviving to adulthood with life-long HIV infection and long-term exposure to highly active antiretroviral therapy (HAART). To standardise and ensure optimal care across the UK for the 1131 children currently in active follow-up in the UK and Ireland, the Children’s HIV Association (CHIVA) has developed standards for paediatric HIV. These emphasise the development of clinical networks with larger, tertiary centres linked to smaller paediatric services.. The London HIV Consortium Paediatric Sub-Group established networks for the care of children infected with HIV in 2004, followed by the setting up of paediatric HIV networks for children outside London in the Children’s HIV National Network (CHINN) review of 2005. ▸ Challenges for clinicians include selection of optimal antiretroviral drug regimen with limited paediatric formulations, pharmacokinetic, safety and efficacy data and extensive drug resistance.

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