Patient Reported Outcome Measures for HIV

Original Editor - Melissa Coetsee

Top Contributors - Melissa Coetsee, Carina Therese Magtibay and Kim Jackson  

This article or area is currently under construction and may only be partially complete. Please come back soon to see the finished work! (26/05/2023)

Introduction

Since the introduction of antiretroviral treatment (ART), HIV related mortality has reduced significantly, and more people are now living with this condition. Morbidity measures have therefore become more important in order to fully understand and measure the impact of HIV on the well-being of those affected by it.

Patient-reported outcomes measures (PROMs) are increasingly being used to measure and monitor quality of life and quality of care, with the aim of promoting patient-centred care . PROMs measure patient perceptions and has been shown to improve patient care by highlighting individual health priorities and by promoting patient engagement - this is of particular importance for patients living with chronic conditions like HIV. Furthermore, PROMs have been shown to accurately predict health outcomes in PLWH.

PROMs can help facilitate the transition from disease-focused HIV care programmes, to programmes that look beyond disease parameters to focus on well-being and personalised care.

PROMs are very useful to assess the various interconnected dimensions that affect the well-being of people living with HIV (PLWH). These dimensions include:

• Physical factors - including frailty, loss of function and pain
• Psychological factors - including mental health concerns often associate with HIV (anxiety and depression)
• Social factors - including stigma and social support
• Spiritual factors
• Socio-economic factors - including access to care

In order to account for HIV-specific factors, such as stigma and ART related symptoms, HIV specific PROMs have been developed.

Overview of PROMs

Benefits of PROMs in HIV

Benefits for patients:

• Improved communication
• Improved assessment
• Patient empowerment
• Improved decision-making

Benefits for clinicians:

• Improved identification of concerns that are often missed

• Better referral
• Improved informed decision-making
• Improved monitoring of change over time
• Justification for spending and informing service design

Domains Assessed

Various PROMs have been developed for use in PLWH and there is currently no 'gold standard'. However, below are some of the domains that are commonly included in these assessment tools are:

1. Understanding viral load
2. Psychological well-being
3. Physical health
4. Socioeconomic well-being
5. Interpersonal and sexual well-being
6. Uptake of ART
7. Stigma
8. Aging with HIV

Some PROMs measure only one specific domain, while others incorporate 3 or more.

Validated PROMs

A Sytematic Review conducted in 2022 assessed 88 PROMs used for adults living with HIV, and concluded that there is a lack of comprehensively validated HIV-specific PROMs. Despite some shortcomings, three HIV specific PROMs were found to have good psychometric properties. These three, as well as a new tool developed following the systematic review, will be discussed below. Other available PROMs for HIV require further research before their use can be recommended.

Positive Outcomes HIV PROM

A brief, comprehensive tool developed for use in routine HIV care. It was designed to cover the physical, mental and social domains of HIV, while being brief enough to be used in routine care. This enables rapid identification of the most burdensome concerns of PLWH while enabling holistic measurement of the impact of HIV.

Validity, reliability and responsiveness have been established for use in adults in the context of European cities

guidance suggests that it is very important for patients to participate in development and validation studies. To determine whether a PROM was well designed, it should be confirmed that the PROM is relevant, comprehensible, and comprehensive from a patient perspective and for their context of use [190]. In addition, PROMs should be able to record the experience of people living with HIV and AIDS and how HIV affects their lives so as to make a study more relevant and have better content validity

PROQOL-HIV

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Poz Quality of Life (PozQol)

• Sufficient content validity and internal consistency

People Living with HIV Resilience Scale (PLHIV-RS)

Sufficient content validity and internal consistency

HIV Symptom Index (HIV-SI)

Sufficient content validity and internal consistency

Although 3 PROMs have been recommended, they all have some shortcomings, reducing the strength of the recommendation for their routine use. Furthermore, although PozQoL [102] and PLHIV-RS [151] achieved class A, they were developed and assessed based on a single validation study. In addition, some items in HIV-SI or SDM have significant differential item functioning between different cultural groups [111], indicating low-quality evidence for “insufficient” cross-cultural validity.

Other

• HIV Stigma Index
• HIV symptom index

Shortcomings of Available PROMs

Positive Outcomes:Validated for use in European cities;

no PROM specifically designed to measure cognitive concerns was included in the analysis. However, considering the high prevalence of HIV-associated neurocognitive disorders and HIV-associated dementia in people living with HIV and AIDS, it is important to assess their cognition via PROMs

Validity

Context plays an important role in determining which factors need to be considered with PROMs. It is therefore important for these tools to be tested for context-specific validity in PLWH.

Role of the MDT team

PLWH have multidimensional needs and PROMs can be a useful tool for all MDT team members to identify and measure patient-specific needs - especially when short consultation times limit the ability of patients to share their concerns.

Nurses and Doctors often focus their attention on viral suppression, and PROMs can assist the medical team in identifying patient concerns that might require referral or more attention

Physiotherapists can use PROMs to identify patient concerns in domains relating to physical health, as well as other domains that may influence adherence to rehabilitation

Resources

• Positive Outcomes HIV PROM
• x

or

1. numbered list
2. x