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.
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.
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.
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.
last follow-up, two-thirds of the young people were taking antiretroviral
treatment, and 95% of this sub-group had an undetectable viral load.
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.
been seven pregnancies (with no HIV transmissions).
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
individuals died, at the ages of 20 and 21. One had refused antiretroviral therapy;
the other had developed multiple drug resistance.
eight had severe lipodystrophy, with several requiring surgery or injectable fillers.
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
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.
common problems were mood, anxiety, adherence, disclosure and relationships,
but people usually presented with more than one issue.
reported stressors include difficult family relationships, lack of social
support, housing problems, financial problems and health problems. Several had
concerns about body image.
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.
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.
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.
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.
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.
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.
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.
two-thirds (62%) reported adhering to at least 95% of their doses, mirroring
the 66% who said that their viral load was undetectable.
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
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
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.
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.”
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.”