Paediatric European Network for Treatment of AIDS (PENTA) Guidelines for Treatment of Paediatric HIV-1 Infection 2015

Optimizing Health in Preparation for Adult Life

A Bamford; A Turkova; H Lyall; C Foster; N Klein; D Bastiaans; D Burger; S Bernadi; K Butler; E Chiappini; P Clayden; M Della Negra; V Giacomet; C Giaquinto; D Gibb; L Galli; M Hainaut; M Koros; L Marques; E Nastouli; T Niehues; A Noguera-Julian; P Rojo; C Rudin; HJ Scherpbier; G Tudor-Williams; SB Welch


HIV Medicine. 2018;19(1):e1-e42. 

In This Article

Adherence and HIV Knowledge

  • Adherence to treatment is paramount and should be discussed at each clinic visit.

  • Every effort should be made to simplify a regimen to support adherence (e.g. using once-daily regimens, FDCs and 'forgiving' regimens with higher barriers to resistance). Simple adherence aids should be used when appropriate.

  • Children should know of their HIV diagnosis before adolescence.

  • Monitoring for psychological, neurocognitive and mental health issues should be routine, allowing early supportive and therapeutic intervention.

Optimal adherence to treatment is of paramount importance for long-term efficacy of ART, and younger children rely on caregivers to deliver this. Although there are some data on the barriers to and predictors of adherence,[92] there are few studies of successful interventions to improve it,[93,94] and there is no gold standard for measuring it. Adherence can be influenced by many factors, including those related to the child/young person (e.g. developmental stage, treatment fatigue and knowledge of status), family and caregivers (e.g. relationship to the child, responsibility for adherence and caregiver beliefs), the antiretroviral regimen (e.g. convenience, palatability, formulation and toxicity), culture and society.[95,96] Some of these factors are outside the control of the treating clinician, but should be acknowledged and addressed. Factors that can be influenced by the medical team include once-daily medication regimens, side effects, choice of formulation and route of administration (e.g. oral versus gastrostomy). A recent meta-analysis of RCTs in adults has highlighted that once-daily regimens and lower pill burden are associated with better adherence, the latter also being associated with better virological suppression.[97]

Despite the difficulties and a lack of easy solutions, the issue of adherence should always be addressed nonjudgementally, both before and after starting children on ART. It is acknowledged that adherence issues change with age and that adherence may be particularly difficult in adolescence.[98] Despite every effort to support adherence, some HIV-infected children and young people may have difficulty with taking medications, leading to detectable VL and associated risk of poor health status, development of drug resistance and risk of onward transmission in sexually active adolescents. In these individuals, careful consideration should be given to options such as a switch to a regimen with a higher barrier to resistance, or even treatment interruption alongside ongoing education regarding HIV transmission.

Every effort should be made to simplify adherence to treatment for children and caregivers. Simple aids to adherence should be used where appropriate – including adherence apps, dossette boxes, pill diaries, text messages and phone alarms. The following adherence points should be considered before prescribing a child's antiretroviral regimen.

  • Is there a once-daily regimen?

  • What is the most forgiving regimen in terms of:

    • timing? (Can a dose be missed or late from time to time? Does administration need to be timed with food intake? What timing best suits the family's routine?)

    • pill count? (Is an FDC available?)

    • barrier to resistance? (Should a boosted PI backbone be used?)

  • Are the parents on treatment, and could the same regimen be used for the child?

  • What are the possible side effects of the regimen – might they reduce adherence (e.g. jaundice with ATV)?

  • Who is taking responsibility for adherence support – within the family and the medical team?

  • How is adherence going to be measured (VL, drug levels, pill counts etc.)?

Before a child or young person goes home from the clinic with their new medication, an adherence support plan should be in place, with contact numbers, a review schedule, peer support plan etc. Families should be encouraged to call the clinic team if there are problems, rather than struggle unsupported.

Children's knowledge of their illness should be assessed and an age-appropriate process of gradual knowledge-building started. Increasingly, clinicians now address issues of disclosure at an earlier age than previously,[99] with awareness that early, general discussions focusing on healthy diet and lifestyle and knowledge about the blood and immune system can provide a useful foundation for later, specific discussions about HIV. It will generally be appropriate for most children to know their HIV status (i.e. for the disease to be named) before adolescence (i.e. from age 9–10 years), although the timing of naming HIV will vary according to the young person's pre-existing knowledge, maturity and developmental age, and the process can be initiated earlier if deemed appropriate by the family and the multidisciplinary team (reviewed in[100]). This process may be delayed in children with significant cognitive/learning difficulties. Once disclosure is complete, adolescents should understand the risks of onward sexual transmission, and safe sex and contraception should be regularly addressed. Giving young people an opportunity to speak with clinic staff on their own is an important part of this process. Appropriate services for adolescents with perinatally acquired HIV infection and the management of transition of their care to adult services are discussed in Section 13.