Young adults who were infected at birth: the complexities of lifelong HIV are increasingly apparent

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Although 85% of young adults who take antiretroviral therapy have an undetectable viral load, the complexities and complications of lifelong HIV infection are becoming increasingly apparent, researchers told the British HIV Association conference in Bournemouth last week. Rates of hospital admissions, co-morbidities and lipodystrophy are high.

The psychological burden of living with HIV is also heavy. Problems with adherence, mood, anxiety, disclosure and relationships are common, with a few young people self-harming or requiring psychiatric medication.

The issues were raised in a series of studies from St. Mary’s Hospital, the London hospital which for many years has had the largest paediatric HIV clinic in the country and has more recently developed the 900 Clinic, a transitional services to help young people manage the shift from child-friendly services into an adult clinic. In addition, a national survey shed light on adherence issues for young people with HIV.



Of or relating to children.


In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.


A disruption to the way the body produces, uses and distributes fat. Different forms of lipodystrophy include lipoatrophy (loss of subcutaneous fat from an area) and lipohypertrophy (accumulation of fat in an area), which may occur in the same person.


A feeling of unease, such as worry or fear, which can be mild or severe. Anxiety disorders are conditions in which anxiety dominates a person’s life or is experienced in particular situations.


A healthcare professional’s recommendation that a person sees another medical specialist or service.

Tania Wan presented data on the health outcomes of 58 perinatally infected young people who were seen between 2006 and 2011 at the 900 Clinic. The young people transferred from paediatric clinic between the ages of 16 and 18 and their current median age is 20, with the youngest 16 and the oldest 26. Three quarters are black African; there are more women than men.

At their last follow-up, two-thirds of the young people were taking antiretroviral treatment, and 95% of this sub-group had an undetectable viral load.

However there were a considerable number of complications. A fifth of patients had a CD4 cell count below 200 cells/mm3. A few of those with undetectable viral load had failed to fully restore their immune function.

At the time of last follow-up, a quarter had chosen to discontinue antiretroviral treatment, despite considerable support and intervention from clinic staff. Just under half of this group had a CD4 cell count below 200 cells/mm3.

There have been seven pregnancies (with no HIV transmissions).

A quarter had at some stage been admitted to hospital as an inpatient, staying a median of nine days. Four had intentionally taken drug overdoses; two hospitalisations were linked to the opportunistic infections PCP and MAI; one 22 year old was admitted following a stroke and osteocronosis (loss of blood supply to the bones).

Two individuals died, at the ages of 20 and 21. One had refused antiretroviral therapy; the other had developed multiple drug resistance.

One in eight had severe lipodystrophy, with several requiring surgery or injectable fillers.

The high levels of psychological need in this group were described in a poster from Graham Frize and colleagues at St. Mary’s. For this analysis, the psychology case notes were checked for 63 young adults attending the clinic between 2008 and 2010.

Just over half were identified as having clinically significant psychological issues, whereas in this age group of the general population, the figure is 13 – 16%. These individuals were all referred for psychological interventions but a quarter did not take up the service. Young men were more likely to decline psychological services than women.

The most common problems were mood, anxiety, adherence, disclosure and relationships, but people usually presented with more than one issue.

Commonly reported stressors include difficult family relationships, lack of social support, housing problems, financial problems and health problems. Several had concerns about body image.

A quarter of clinic patients (17 people) were considered to have complex needs. Five had self-harmed by taking a drug overdose (including the four requiring hospitalisation as previously mentioned). Eight have been prescribed psychiatric medication. Four were referred for neuropsychological testing due to concerns about the impact of neurocognitive impairment on their functioning.

Given the results of this analysis, St. Mary’s have decided to offer an annual psychological review for this group of patients. This will involve tests to assess psychological distress as well as physical and mental health-related quality of life.

Adherence to medication is challenging for this group and a problem which drives many of the health complications described above. Another poster from St. Mary’s reviewed adherence and treatment response in young people, both while they were attending the paediatric clinic and later when they attended adult services.

Individuals who had good self-reported adherence in childhood generally maintained the same behaviour as young adults and continued to have good treatment response. Similarly, those with poor adherence in childhood most commonly continued to have difficulties, with sub-optimal clinical outcomes.

This is despite the provision of intensive support in both the paediatric and adult services including provision from psychologists, peers and the voluntary sector; practical adherence aids; directly observed therapy and the use of gastrostomy tubes into the stomach.

The researchers suggest that as adherence patterns appear to be established in childhood, it is essential to support adherence when children begin therapy in order to promote long-term adherence and survival.

The final study, from Susan McDonald and colleagues is a national survey of young people with HIV aged 12 to 24, in order to review their feelings and concerns about adherence. A total of 138 took part, with a median age of 16, and once again there was greater participation from females than males.

Just under two-thirds (62%) reported adhering to at least 95% of their doses, mirroring the 66% who said that their viral load was undetectable.

Only a third used practical adherence tools such as pill boxes, alarms, keeping medication in a place that helps them remember or carrying a spare dose with them.

When asked what helped them adhere, the participants were more likely to mention reminders and support from family, carers and peers - just under half mentioned this. Not being able to take treatment in front of family or friends (due to disclosure issues) negatively affected the adherence on a fifth of respondents. Some mentioned that if they didn’t need to keep HIV such a secret, their adherence would improve.

Drug side effects were described as a factor that had contributed to treatment interruptions and to missing doses by many participants. Fewer side effects, fewer pills and once-daily regimens were thought to help adherence.

One respondent described the reasons behind a treatment interruption: “Feeling depressed and there are times when you don’t feel like taking them because you feel well and when you feel them you feel ill.”

Another respondent’s comment on what could help adherence was: “I don’t know really, I like the challenge, every day’s a victory, peer support has given me insight.”


Wan T et al. Health outcomes for young adults with perinatally acquired HIV-1 infection following transfer to adult services. 17th annual British HIV Association conference, Bournemouth, abstract O31, 2011.

Frize G et al. Psychology service evaluation in a clinic for young people (over 16 years) living with HIV and transitioning to adult care. 17th annual British HIV Association conference, Bournemouth, abstract P168, 2011.

Kent A et al. How do patterns of antiretroviral adherence in a childhood impact on adherence in adult life? 17th annual British HIV Association conference, Bournemouth, abstract P59, 2011.

McDonald S et al. Young people and self-reported adherence to antiretroviral therapy: a HYPNet survey. 17th annual British HIV Association conference, Bournemouth, abstract P198, 2011.

For more on young people with HIV, see the October 2010 issue of HIV Treatment Update.