Paediatric to adult HIV care transition – the risk of disengagement
Young adults represent a growing proportion of the number of people living with HIV in the USA, but they are at high-risk of disengaging from care when transitioning from paediatric to adult services.
While a number of qualitative studies have been completed looking at the specific challenges relating to HIV care transition for young people living with HIV moving into adult care, empirical data using objective clinical measures of outcomes post-transition is limited, and particularly in the USA.
In a retrospective cohort study, 72 youth were assessed at the Grady Infectious Disease Program (IDP) clinic in Atlanta, Georgia. This cohort represents one of the largest to look at youth living with HIV transitioning from paediatric to adult care.
Data was analysed from HIV-infected adults who had been enrolled in both the adult and paediatric clinics at IDP at any point between 2004 and 2014. Clinical information collected included care linkage, retention and virological suppression as well as demographic and clinical insights. Data was abstracted from the last two years of paediatric care, through to the first two years of adult care from their first visit.
Successful linkage to care was defined as visiting the adult clinic within three and six months of the last paediatric visit. Care retention was defined as having two visits separated by a three-month period in the first 12 months after initiating adult care, and again two years after initiating adult care.
Around one-third of the patients were linked to care within the first three months, and 40% were linked within six months. The median time between last paediatric visit and first adult visit was 10 months. Around half of all participants were enrolled in paediatric care immediately prior to transition, while the other half had experienced a gap in care, and were re-enrolled when they presented to adult care.
They found no difference for the patient between the two clinics one year after entering the adult clinic, but after two years, retention was significantly lower – 56% compared to 95%. There was no difference in virological suppression data.
What was notable, however, was the difference in care outcomes between patients who had transitioned, and those who had a gap in care – with those re-enrolled experiencing poorer clinical outcomes.
Those who had been immediately transitioned were more likely to be virally suppressed – 52% compared to 27% in the group that were re-enrolled. This group were also more likely to be retained in care in the second year after transition (65% vs. 27%) and have a higher viral suppression rates at last adult visit (54% vs. 35%).
While the authors note that these results were not statistically significant, they do point to the fact that disengagement in paediatric care will predict poor outcomes in adult care. It is clear that more efforts are needed to prepare these young people for transition – and perhaps years earlier.
Continued supporting of youth beyond the first year after care linkage – possibly into year two – would also be beneficial for care retention.
The authors note that despite youth having HIV services in the same building, as was the case at IDP, a lack of timely linkage to care could be the result of differences in support between the two clinics, fear of the adult clinic, and attachment to former clinic staff. These challenges have already been previously outlined in multiple qualitative studies. They also note that disengagement could be the result of factors outside of the clinic.
The authors state that there is a need to expand social services and interventions programmes so that high-risk young people living with HIV and are at risk of disengagement are included and targeted – with structured protocols for transition that start years before actual transition.
They conclude, “Our findings support the development, testing and implementation of comprehensive interventions to improve engagement among youth who are still in paediatric care, as these are likely to have the potential for further downstream effects on engagement through the transition and to care in adult-oriented settings.”