Despite advances in treatment, people living with HIV have poorer health-related quality of life than the general population, often experiencing mental and physical health challenges, alongside significant social and spiritual concerns [1].
Clinical appointments do not always address the things that matter most to individuals living with HIV, which has implications for their engagement with treatment and their care outcomes [2].
A patient-reported outcome measure (PROM), called ‘Positive Outcomes’, has been developed and validated in response to this, to enable patient-centred outcome assessment as part of routine HIV care [3,4]. A patient reported outcome (PROM) is “any report of the status of a patient’s health condition that comes directly from the patient without interpretation by a clinician or anyone else” [5].
Positive Outcomes was developed by 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).
Often, PROMs enable patients to be more involved in their care, allowing them to report their needs and symptoms to health and social care professionals and providing an opportunity to address unmet needs.
The aim of this project is to develop a patient-centred quality improvement programme by implementing the existing Positive Outcomes measure across five different HIV clinics. The researchers want to demonstrate the programme’s feasibility and create a framework for its wider adoption.
Effective application of the Positive Outcomes measure will improve care at an individual level by promoting holistic care, and at a service level by identifying population needs within developing services.
The Positive Outcomes measure will be implemented into routine HIV care across five clinics, including at King's College Hospital in south London, and Chelsea & Westminster Hospital and University Hospitals Sussex.
People living with HIV will complete the Positive Outcomes PROM ahead of their clinic appointment. During the appointment their clinician will refer to the completed PROM to identify and address main symptoms and concerns.
Successful implementation of Positive Outcomes will be assessed by looking at uptake of the PROM across clinics, clinician responses to symptoms and concerns raised, and impact on patient care and outcomes.
Additionally, both people living with HIV and clinicians and staff at the participating clinics will be interviewed by the research team. Interviews will help determine the impact and experience of using Positive Outcomes in routine care.
A patient representative will be part of the quality improvement team at each of the five implementation sites. Additionally, a lead patient representative is part of the core research team and will input on the project at every stage.
The researchers will work alongside the British HIV Association (BHIVA) and UK Community Advisory Board (UK-CAB). The project began in September 2024 and is expected to end in August 2027.
Read more about the palliative and end of life care research at ARC South London.
1. Health-related quality-of-life of people with HIV in the era of combination antiretroviral treatment: a cross-sectional comparison with the general population. Miners, A. et al., Lancet HIV, Oct 2014
2. 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. Bristowe, K. et al, HIV Med. Sep 2019
3. The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV. Bristowe K,. et al, Health Qual Life Outcomes. Jul 2020
4. Positive Outcomes: Validity, reliability and responsiveness of a novel person-centred outcome measure for people with HIV. Harding, R. et al, HIV Med. Jul 2022
5. Patient-reported outcomes and experiences study.GOV.UK, 2020