Top tips on re-engaging patients lost to HIV care and keeping young people engaged through the transition to adult clinics

At the Chiva conference on 15 March 2024, Dr Kate Childs from King’s College Hospital NHS Foundation Trust gave a very insightful talk about People living with HIV (PLWH) who are not in care

Despite there being access to successful HIV care in the UK, some individuals fall out of care for various reasons.

Amongst PLWH hospitalised with HIV-related illnesses at Kings College Hospital and Guy’s and St Thomas’, the proportion of those not in care is higher than the proportion of new diagnoses.

From July 2020-Dec 2021, three NHS Trusts tried to re-engage patients that hadn’t attended an appointment for over a year, in a project funded by the Elton John AIDS Foundation (EJAF).

The project identified 824 PLWH who were potentially lost to follow up care across three sites. 153 of these people (18.5%) were successfully re-engaged in the project. 76% were still in care one year later and the majority had a viral load of <200.

45% of re-engaged patients came from the most deprived areas in the UK. In SE London, this issue disproportionately affects women of black ethnicity from areas of social deprivation. As such it represents a significant health inequality.

Looking at the bigger picture, the UK Health Security Agency dataset shows that 22,670 PLWH in England in 2021 had not been seen in care for 15 months. 

A BHIVA audit in 2023 found that 60% of HIV inpatient admissions were either a new diagnosis (22%) or someone with sub-optimal engagement (38%).

The REACH study in 2017 found that common reasons for disengaging in care were: drug and alcohol misuse; insufficient money for use of public transport to get to clinic; stigma; younger age at diagnosis and having children to care for.

Dr Childs shared some practical tips that have worked to re-engage patients:

  • Ensuring continuity of care and good relationships with health professionals 
  • Maintaining contact, send text messages using very positive language such as, ‘We are here and would be very pleased to see you.’
  • Addressing and prioritising patient needs
  • Proactively involving close family members and friends
  • Providing flexible follow up appointments
  • Having a dedicated keyworker
  • Signing off letter with explanation of symptoms to be mindful of

Dr Childs concluded with the important message that the UK Health Security Agency has given every HIV clinic a list of patients not seen in more than a year from their service and that re-engaging these people should be a top priority for the HIV care community.

However, re-engagement work is resource intensive and needs funding.

Dr Sarah Rutter, Consultant Clinical Psychologist, North Manchester General Hospital, presented on how the impact of trauma can be challenging for young people when moving from paediatric to adult HIV care and the need for trauma-informed care during this transition.

Dr Rutter explained that when we experience a trauma, a different part of the brain takes over and enables the body to go into either fight, flight or freeze mode.

Fear, shame or horror combined with helplessness results in trauma and it is also accumulative in effect.

A child or young person growing up with HIV may have other significant stresses to deal with such parent ill-health, or parental bereavement, or being moved around and having different primary carers.

There are three systems of emotional regulation: drive, soothing and threat. Everyday persistent stresses, like HIV stress, drive the ‘threat’ system and increase feelings of anxiety, anger and disgust.

This is why it’s vital for clinic teams to help young people to manage the different stressors that can occur for a person living with HIV – particularly as they transition to adult HIV care. Dr Rutter shared some useful strategies that might support this.

  • Constantly tell young people that you care about their needs. This builds their self-worth, self-esteem and self-confidence.
  • Ask the young person about their needs, worries, hopes, values, priorities?
  • Meet them where they are
  • Adult clinicians need to talk to the paediatric team
    • Gather the history
    • Understand what has worked for them and what doesn’t work
  • Ensure gradual handovers – focus on the development of new relationships
  • Key worker allocation – an identified individual is helpful but involve more workers over time
  • Provide personalised and collaborative care plans – taking into account coping styles
    • Avoidant?
    • High distress?
  • How to maintain a safe base?
    • Proactive vs reactive
    • Providing structured contact
    • Ensuring consistent boundaries – hold across the team
  • Communication (the how as well as the what)
    • Use what they use
    • Visible communication is important

These presentations underscored the importance of tailored approaches to maintain engagement in HIV care. By addressing individual needs, building supportive relationships, and providing trauma-informed care, the HIV care community can better support patients, particularly during transitions and periods of disengagement.