Time to PrEP Disengagement and Associated Factors Among Adolescents and Young Adults from Key and Priority Populations in Uganda. A survival Analysis
This retrospective survival analysis of 3,553 adolescents and young adults in eastern Uganda reveals that PrEP disengagement occurs rapidly within the first year, with retention significantly influenced by relational factors like partner HIV status and marital status, as well as service delivery modality and specific vulnerabilities such as STIs and gender-based violence.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of a preprint that has not been peer-reviewed. It is not medical advice. Do not make health decisions based on this content. Read full disclaimer
Imagine you are trying to keep a garden alive. You have a special, powerful fertilizer called PrEP (Pre-Exposure Prophylaxis) that can stop a nasty weed called HIV from taking over your plants. Scientists have known for a long time that if you use this fertilizer every single day, it works incredibly well—like a super-shield that blocks the weed more than 90% of the time. But here's the tricky part: just because you buy the fertilizer and put it in the soil once doesn't mean your garden stays safe forever. The real magic happens only if you keep watering it and using it every day, even when you feel fine, even when you're busy, and even when the weather changes.
For a long time, health workers have been great at handing out the fertilizer to young people who are at high risk of getting the weed. But they've noticed a frustrating pattern: many people start using the fertilizer, get excited, and then stop after a few weeks or months. It's like buying a gym membership, going to the first few classes, and then never returning. This study asks a simple but vital question: Why do young people stop using this life-saving shield, and how long does it usually take before they walk away? By understanding the "when" and "why" of people leaving the program, health workers can figure out how to build a better system that helps people stay protected for the long haul, rather than just getting them to start.
The Great PrEP Drop-Off: A Story from Uganda
In a recent study from eastern Uganda, researchers Simon Mwima and Stephen Walwo decided to investigate this "drop-off" mystery. They looked at the records of 3,553 young people (aged 15 to 29) who were part of groups at higher risk for HIV, such as sex workers, men who have sex with men, and people who inject drugs. These young people started taking PrEP between 2019 and 2025. The researchers didn't just ask them why they stopped; they watched the clock. They measured exactly how many days passed from the moment someone started the medication until they stopped coming back for their refills.
Think of PrEP engagement like a long-distance race. The researchers wanted to see how far the runners could go before they decided to quit. They found that the race was much shorter than anyone hoped. The "median" time—the point where half the runners had already quit—was 284 days (about nine months). But the real drop-off happened much earlier. By the time the runners hit the 90-day mark, only 60.1% were still in the race. By the time they reached the 365-day (one-year) finish line, only 20.2% were still running. That means four out of every five young people had stopped taking their medication within a year.
Who Quit and Who Stayed?
The study dug deep to find out what made some runners stay while others left. They used a special mathematical tool (called a survival analysis) to see which factors were like heavy backpacks making the race harder, and which were like running shoes making it easier.
The Heavy Backpacks (Factors that made people quit faster):
- Knowing a Partner's Status: This one was surprising. Young people who knew their partner's HIV status were actually twice as likely to quit PrEP compared to those who didn't know. The researchers suggest that once the mystery is solved (e.g., "My partner is negative" or "My partner is on treatment"), the young person might feel the danger has passed and decide they don't need the shield anymore, even if their risk situation changes later.
- Starting in the Community: If someone started their PrEP journey through a community outreach program (like a mobile clinic or a drop-in center) rather than a hospital, they were 1.42 times more likely to quit. While community programs are great for getting people to start, they seem to struggle to keep them coming back for the long run.
- Being Single: Single young people were more likely to quit than those who were married. Marriage seemed to act like a support system, keeping people on track.
- Age: Older young adults (ages 20–29) were slightly more likely to quit than the youngest teens (15–19).
The Running Shoes (Factors that helped people stay):
- Being Married: As mentioned, married participants were much more likely to stay engaged.
- Having an STI or GBV Experience: This sounds counterintuitive, but young people who reported having a sexually transmitted infection (STI) or experiencing gender-based violence were less likely to quit. The researchers think this is because these difficult experiences often lead to more intense conversations with doctors and more frequent check-ups, which accidentally created a stronger safety net that kept them on PrEP.
- Being from Certain Groups: Sex workers were the group most likely to quit early. In contrast, men who have sex with men and people who inject drugs stayed on the medication longer than sex workers did.
What This Means for the Future
The paper doesn't claim to have solved the problem, but it points a very clear finger at where the system is breaking. It suggests that the current way of delivering PrEP is great at getting people to the starting line, but it's not built for the long race.
The authors argue that we need to change the game. Instead of just handing out the "fertilizer" and hoping people remember to use it, we need to build a system that understands that young people's lives are messy and change fast. They suggest that:
- Community programs need a better follow-up plan. If you start in a community clinic, you need a clear path to stay connected, not just a one-time visit.
- We need to talk about risk differently. Just because a partner's status is known doesn't mean the risk is gone forever. Young people need to understand that PrEP is for future protection too, not just for right now.
- We should use "crisis moments" as opportunities. Since people who face STIs or violence seem to stay on PrEP longer, health workers should use those moments to lock in support and keep them engaged.
In short, the study shows that while we are good at starting the party, we are bad at keeping the guests until the end. To win the fight against HIV, we need to stop focusing only on the first step and start building a journey that young people can actually finish.
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