Lost to follow-up: An analysis of people in South London who dropped out of HIV care

According to the UK Health Security Agency, the number of people who dropped out of HIV care may have doubled during the COVID-19 pandemic. Dr Kate Childs of King’s College London and her colleagues at St Thomas’ and Lewisham Hospitals conducted set up a study to investigate how many people really dropped out of HIV care and whether they could be brought back into clinic. The results of study were published in the journal, aidsmap. 

Previous studies have shown that those who have been lost to follow-up often return to care when serious health problems occur. This frequently happens when they’re hospitalised for another health problem, at which time they have a high viral load and low CD4 count.

In this study, Dr Childs and her colleagues, examined their own clinic records, cross referenced them with national surveillance data, the records of other HIV clinics around the UK and engaged in detailed contact tracing in an attempt to reengage the patients.

Across the three foundation trusts, data was found for 7,092 patients who had not attended clinic for more than a year - of these only 2,275 were able to be contacted.

Of those 2,275 the team were able to reach:

• 1,451 were being treated elsewhere
• 824 were not access care and treatment
• 153 returned to clinic and accessed treatment for at least 12 months

Who returned to clinic?

Amongst those who returned to clinic and accessed treatment:

• 70% were heterosexual
• 22% were men who have sex with men
• 8% were injecting drug users
• Women were also more likely (57%) to restart treatment than men.

Why are people lost to follow-up?

Domestic violence and coercion: “Ex-partner was very negative about HIV and about taking medication”

Stigma: “Doesn’t care who knows her status, but doesn’t want her teenage son ‘tarred’.”

Self-stigma and self-isolation: “He still feels guilty about the HIV and tries not to think about it.”

Anxiety and depression: “The patient has emotional issues and low self-worth. Withdrew from getting treatment. Feels not deserving of treatments.”

Poor mental health was also considered as a loss factor for follow-up, with experts calling for specialised mental health support for people struggling to accept their diagnosis or take their treatment.

Dr Carl de Souza from Croydon University Hospital said that “Specialist mental health support is essential to ensure a good quality of life for people living with HIV”