The first step in the 'Health Goals for Me' framework, 'Ask & Measure' is about empowering each person living with HIV to engage with the management of their long-term healthy living.
At its core, this means helping people living with HIV prioritise the QoL goals that matter to them; first by Asking the right questions to identify these goals; then by accurately Measuring them to collect meaningful QoL data.
This isn't just theory. In this section, we outline a practical implementation system developed by our Moving Fourth Steering Committee, as well as recommended patient reported outcome measures (PROMs) for different QoL factors, selected from an in-depth audit.
The second White Paper gives an in-depth overview of 'Ask & Measure' and its role in the 'Health Goals for Me' framework. Find out more about the 'Ask & Measure' system, the systematic PROMs audit and practical recommendations for implementation in clinical practice.
Developed by the Moving Fourth Steering Committee, the 'Ask & Measure' system provides a practical methodology to identify the right PROMs for a person living with HIV.
After assessing overall health, HCPs dive deeper with more specific questions to identify exact problem areas, and how they have been affected.
PROMs work in HIV care, and the evidence is out there. Decision making, capturing symptoms and patient-clinician communication all benefit from their use, but despite this, there remains some uncertainty amongst experts when and where they are best deployed.
To give HCPs better clarity, our committee conducted a systematic PROM audit for the QoL factors outlined by each Ask domain (further details of this audit can be found in the Chapter 2 White Paper). The following recommended PROMs and their alternatives are the result of this in-depth review.†
Give back the health status information in a format that people living with HIV can interpret, so they can discuss its relevance to the choice of appropriate intervention in partnership with their HCP
Measurements and feedback are used to establish common goals and a hierarchy of interventions are determined through shared decision making by the HCP and person living with HIV
HCP: healthcare professional; PROM: patient reported outcome measure; QoL: quality of life.
* These recommendations are made as part of the Steering Committee's aim to provide practical guidance for the Ask & Measure System. PROMs were chosen from an audit of existing PROMs available in the public domain, as well as PROMs known to the Steering Committee Members based on their own clinical experience. As part of the recommendation selection process, PROMs were assessed and scored against three key criteria – Ease of Use, Validation and Availability. As with all research and review processes, while every effort was made to include all PROMs available under each factor, PROMs that are not widely used and not readily available may have been excluded in the process.
† In clinical practice and where appropriate and feasible, we recommend that the preferred PROM should be used in the first instance. This may not be possible in some situations; in which case the alternative PROMs can be used as a substitute.
‡ The HRFS-56 is not freely available, however it is the only HIV-specific PROM available for fatigue. Based on this, we agreed to include the HRFS-56 as the alternative PROM for fatigue.
§ The FSFI was duplicated for both Sexual Desire and Sexual Dysfunction to provide a PROM for females, alongside the IIEF-5 and SDI-2 for males.
** These PROMs were identified during the Steering Committee meeting based on their clinical experience.