Seeing More Than HIV: Why “Patient Reported Outcomes” Matter

Sponsored by ViiV Healthcare

Today, the patient sat down [and] said, “Yeah, things are okay, I’m just not sleeping good.” But when I looked at the questionnaire that he had just answered, he was suicidal a couple of times last week. - (Physician, San Diego)

Today’s HIV treatment options mean that many people living with HIV now live as long as those who do not have HIV. HIV prevention has also undergone a remarkable transformation in recent years. Those who may be vulnerable to acquiring HIV also have the option of using pre-exposure prophylaxis (PrEP), with various methods available.

For those on treatment, while achieving and maintaining viral suppression remains a critical focus, HIV care now needs to further consider the needs of people living with HIV who can expect to be on treatment for longer, including treatment satisfaction and quality of life. But how can we better understand the needs of people living with HIV and those with reasons for HIV prevention, when 3 in 4 people living with HIV say there’s at least one issue they’re uncomfortable discussing with their HCP¹?

Uncovering the hidden needs of your patients through “Patient Reported Outcomes”

“Patient Reported Outcomes” (PROs) refer to any report of a person’s health condition that comes directly from the individual, without interpretation by an HCP - for example via questionnaires; they capture a person’s perceptions of their own health that either cannot be directly observed (e.g. mental health, quality of life) or are not easy to directly observe (e.g. treatment adherence). Collecting PROs before a patient appointment can help equip HCPs to go beyond conversations around viral suppression, to capture the impact of care and treatment on health and understand drivers of a patient’s well-being².

PROs can be essential for understanding how treatment affects daily life, from managing potential side effects to the convenience of the treatment. For example, research from the Positive Perspectives study (sponsored by ViiV Healthcare), one of the largest global HIV PRO studies to date, shows that more than half of people living with HIV aren’t satisfied with their current medication¹, and those who are dissatisfied are more than twice as likely to be non-adherent to their treatment.³

PROs can also uncover barriers to taking HIV prevention options, including stigma, remembering to take medication every day, or lack of access to healthcare services. These insights can help individuals decide between different HIV prevention options to suit their lifestyle and individual preferences.

“PROs are incredibly valuable in helping providers uncover previously unrecognised problems or concerns that patients may have difficulty talking about during regular appointments, including adherence or dissatisfaction with their current treatment. PROs can ultimately allow us to address those concerns, and work together to improve patient health outcomes, quality of life and overall satisfaction with their treatment” said Professor Giovanni Guaraldi, Professor of Infectious Disease at the University of Modena and Reggio Emilia, Italy.

MyPro: Changing the approach to HIV care

Researchers at ViiV Healthcare tasked themselves with finding a solution to help incorporate PROs more easily into clinical practice to support HCPs in uncovering the hidden needs of their patients. The result was MyPro - a simple, digital, cloud-based assessment tool, designed to help HCPs broach sensitive topics that their patients may not feel comfortable talking about, including treatment preferences, quality of life, and mental health issues.

When a patient arrives at the clinic, they’re given an electronic tablet to complete a questionnaire while in the waiting room or are sent it via email or text message to complete in their own time. The results are then collated instantly and organised into a summary sheet for the HCP to review. This assessment opens the door to discussions about hidden needs that can significantly impact a person’s care but might otherwise be overlooked. By using MyPro, HCPs can gain deeper insights into their patients' needs, preferences and experiences and tailor treatment plans accordingly.

Duncan Short, director of Global Implementation Science at ViiV Healthcare, highlights the importance of these conversations:

“The MyPro tool is a game-changer in how we approach HIV care. From a doctor’s perspective, they may see a patient’s viral load is suppressed and there may be nothing visually concerning but hidden from them is a layer within the patient that needs to be explored if they are to understand their quality of life and the factors that drive this including their medication needs.”

Moving forward: A collaborative approach to holistic care

With the growing number of treatment and prevention options available, and as people living with HIV live longer lives and more individuals consider HIV prevention, the need for a more holistic and personalised approach to care is now critical. By embracing PROs and prioritising open communication, we can move beyond viral suppression or the efficacy of a medicine and empower people to live their healthiest and most fulfilling lives. By working together, we can ensure that HIV care addresses not only viral suppression, but also the emotional, mental, and social well-being of each individual.

References

¹ ViiV Healthcare. Positive Perspectives Study, Wave 2 Results Report. Available at: https://viivhealthcare.com/content/dam/cf-viiv/viivhealthcare/en_GB/files/211203-updated-pp2-report-v9.0.pdf. Last accessed: August 2024.

² Short D, Fredericksen RJ, Crane HM, Fitzsimmons E, Suri S, Bacon J, Musten A, Gough K, Ramgopal M, Berry J, McReynolds J, Kroch A, Jacobs B, Hodge V, Korlipara D, Lober W. Utility and Impact of the Implementation of Same-Day, Self-administered Electronic Patient-Reported Outcomes Assessments in Routine HIV Care in two North American Clinics. AIDS and behavior. 2022 Jan 22:1–16. doi: 10.1007/s10461-022-03585-w.

³ Short, D., Wang, X., Suri, S., Hsu, T. K., Jones, B., Fredericksen, R. J., Crane, H. M., Musten, A., Bacon, J., Wang, Y., Gough, K. A., Ramgopal, M., Berry, J., & Lober, W. B. (2022). Risk Factors for Suboptimal Adherence Identified by Patient-Reported Outcomes Assessments in Routine HIV Care at 2 North American Clinics. Patient preference and adherence, 16, 2461–2472. https://doi.org/10.2147/PPA.S378335