Needs of adolescents with HIV need greater attention, AIDS 2012 hears

Complications of HIV infection among adolescents in resource-poor settings include malnutrition, chronic lung disease and tuberculosis as well as the long-term side effects of drugs - including lipodystrophy, peripheral neuropathy and high blood cholesterol (dislypidemia) – Dr. Phillipa Musoke told participants at a bridging session at the Nineteenth International AIDS Conference in Washington, DC last month.

Adolescents infected at birth in resource-poor settings because of late diagnosis and treatment are at significant risk for developmental impairment including growth stunting and wasting, delayed puberty as well as neurocognitive functioning.

Not surprisingly against this background and at a critical (and vulnerable) time in their development, evidence has shown that HIV-infected adolescents in resource-poor settings have poorer adherence rates and poorer virological outcomes than their adult counterparts.

Stigma and discrimination, late or non-disclosure, denial, limited access to information, being the primary caregiver often in a family where others are living with HIV all contribute to the likelihood of adolescents not taking their medications, and dropping out of health care as well as engaging in high risk behaviours.

As ART programmes expand, survival among children is increasing and so the number of adolescents needing ART will also increase. Scale-up will then need programmes that specifically address the particular needs of adolescents.

Adolescents are usually managed in adult programmes; service providers, especially in rural settings, are not trained to work with adolescents, yet evidence from a number of treatment programmes now shows that adolescents have specific challenges in relation to antiretroviral treatment and living with HIV. These include:

• Late presentation to care due to lack of HIV diagnosis
• Adherence to medication
• Toxicity of long-term treatment, particularly lipodystrophy
• Onset of sexual activity and negotiation of HIV status disclosure

In the case of lipodystrophy Dr. Musoke, highlighting a cross-sectional study by Piloya et al of over 300 children in Uganda aged between two and 18 years of age, more than 40% over ten years of age on ART for a median of 3.8 years noted over a quarter had fat redistribution (lipodystrophy) and more than a third had high blood cholesterol.

Fat redistribution was significantly associated with Tanner stages 2 to 5 OR=2.3 (95%CI: 1.3-3.8), being over five years of age OR=3.9 (95% CI: 1.5-9.9) and use of d4T OR= 3.4 (95% CI: 2.0-5.8)

The Tanner scale (also known as the Tanner stages) is a scale of physical development in children, adolescents and adults.

The authors concluded that prevalence of lipodystrophy is high among HIV-infected children on ART, with the likelihood of developing fat redistribution and metabolic abnormalities increasing during puberty.

While lipodystrophy in itself is not life-threatening the physical changes in appearance are psychologically damaging and stigmatising, leading to fear of disclosure, social isolation, poor adherence and stopping of treatment. All of these are heightened during this especially vulnerable time for adolescents.

Treatment success in Zimbabwe

Dr. Wufu Ndbele at a later session, showed that contrary to current but limited evidence, adolescents on ART can equal or do better than adults on ART in resource-poor settings.

Over a six-year period the number of adolescents and adults starting ART increased seven-fold and three-fold respectively at an MSF urban clinic in Bulawayo, Zimbabwe.

However the risk for death among adolescents was comparable to that of adults (HR=0.92, p=0.3793) but loss to follow-up (LTFU) was almost twice as high among adults (HR=1.92, p<0.0005), Dr. Ndbele reported at a later session.

Dr. Ndbele and his colleagues, in this retrospective cohort analysis, looked at the effects of scale-up among a large cohort of adolescents.

As adolescent numbers increased so did management challenges. An adolescent model of care was put in place. The adolescent clinic is a space separate from the adult and paediatric clinics. All Mpilo Clinic staff are trained in adolescent care.

Specific tailored activities to ensure comprehensive care both within the clinic setting as well as outside were initiated. These included

·      Dedicated, highly trained counsellors

·      Life skills activities: pottery, income-generating projects, expressing feeling through art

·      Social activities; a camp outside the clinic

·      Youth club and a “Chill Room”

·      Actively tracking those defaulting – with the help of their peers

·      Peer counselling

·      Importantly, adolescents were active participants in their care, making informed decisions. Elected peer representatives engaged in clinic management decisions.

9390 adults and 2014 adolescents (aged 10 or over and under 19) started ART at the Mpilo OI ART clinic from 2004 until 2010. Over the first three years LTFU among adolescents steadily increased reaching a peak of 7% but fell to under 5% by the end of the study period.

Adolescents were significantly more likely than adults to start ART and to hav reached WHO stage IV HIV disease (91.5% compared to 60.7% and 32.4% compared to 24.9%, respectively). HIV diagnosis among adolescents was usually after clinical illness, consistent with current estimates of 75% of adolescents with HIV undiagnosed.

The majority of patients were female among both adolescents and adults (52% and 70% respectively).

17% of all actively followed patients were adolescents compared to an estimated 5% nationally.

Dr. Ndbele concluded there is “a need to increase case-finding efforts by incorporating innovative approaches to identify HIV-positive adolescents then link them to care tailored to their needs.”

As these results show, he added, good outcomes are feasible in resource-poor settings with dedicated and psychosocial resources.