• A new tool has been developed to support people living with HIV to receive care that is centred on the individual
• POSITIVE Outcomes is the first tool specifically designed for use in clinical settings to focus on what matters to people living with HIV
• It is a valid patient-reported outcome measure

Researchers from King’s College London and the British HIV Association (BHIVA), with input from HIV community members of the UK Community Advisory Board (UK-CAB), have launched a tool to support people with HIV and help healthcare professionals understand where to focus their care.

POSITIVE Outcomes is a simple tool which can quickly identify what matters to people living with HIV, and so enable care that is centred on the individual. It is the result of a five-year collaboration between researchers from the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King’s College London, BHIVA and the UK-CAB.

Routine use of the tool will have numerous benefits for both people living with HIV and the healthcare professionals delivering their care. For people living with HIV, the intended benefits include enhanced communication, assessment, empowerment, and decision-making. For clinicians, the tool will improve identification of ‘missed’ concerns, offer better referral, inform treatment decisions and improve monitoring of change over time. It will also help to inform service design and delivery, justification of spending and improved care provision.

Despite today’s highly effective medical management of HIV, research shows that people living with the condition have worse health-related quality of life than the general population and experience symptoms and concerns that span many areas, including physical, cognitive, psychological, social, welfare and information.

The research group completed three phases of study which informed the tool’s development. In the first stage, they identified priority outcomes for people living with HIV and explored views on introducing patient-centred outcomes measures (PROMs) into routine care. A PROM is a brief list of the things that matter most to people living with a health condition, which enables the person to score what is bothering them, and thus to quickly inform healthcare professionals where they should focus. This initial stage found that study participants strongly supported the idea of a PROM for use in routine care.

Read the findings from the first stage: Towards person-centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross-national multi-centre qualitative study with key stakeholders
(Journal of HIV Medicine)

In the second phase, a group comprised of researchers, healthcare professionals and people living with HIV came together to develop a PROM specifically for people living with HIV in the UK and Ireland, spanning the symptoms and concerns highlighted by the first-stage data.

Read the findings from the second stage: The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV
(Journal of Health and Quality of Life Outcomes)

The third stage of the study focused on testing the tool to ensure that it measures what it should, and that it does so accurately. 1,392 people across five European countries took part in the final phase, completing the POSITIVE Outcomes at least twice.

Read the findings from the third stage: Positive Outcomes: Validity, reliability and responsiveness of a novel person-centred outcome measure for people with HIV (Journal of HIV Medicine)