Patient Reported Outcome Measures for HIV

Original Editor - Melissa Coetsee

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

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Introduction

Since the introduction of antiretroviral treatment (ART), Human Immunodeficiency Virus (HIV) related mortality has reduced significantly, and as a result more people are now living with this condition. Morbidity measures have therefore become increasingly 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 have proven benefits for patient care as it helps to identify individual health priorities and promotes 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 (such as mortality, morbidity and health system expenditure) 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. This will enable a holistic approach with increased potential to achieve the fourth '90' goal proposed by UNAIDS - to achieve good quality of life to 90% of PLWH.

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
• 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.

*** A holistic approach to HIV treatment and care is needed, focused on the individual, rather than treating symptoms and concerns in isolation. Global HIV policy and public health initiatives continue to focus attention on diagnosis, treatment adherence and viral suppression in order to end the HIV/AIDS epidemic [6]. People living with HIV have long reported that this focus on viral suppression and treatment adherence is reflected within clinical consultations, with a lack of attention or opportunity to discuss needs beyond ART-related concerns [5, 7, 8]. Care that focuses on what matters to the individual, and is respectful and responsive to their needs, can improve care experiences and health outcomes [9,10,11]. Person-centred care incorporating patient reported outcome measures (PROMs) can improve patient-clinician communication, clinical decision-making, symptom recognition and treatment adherence [12, 13]. As well as improving outcomes at an individual level, PROMs can also ensure services deliver equitable and high quality care that meets the needs of their population [14, 15].

Overview of PROMs

Benefits of PROMs in HIV

PROMs facilitate patient-centred care and have various benefits for PLWH and healthcare providers. Research has even proven that PROMs are superior to provider-reported data in predicting clinical outcomes and capturing ART experience.

Benefits for patients:

• Improved patient-clinician communication and joint decision making
• Improved assessment
• Patient empowerment
• Improved resilience

Benefits for clinicians:

• Improved identification of concerns that are often missed, especially aspects related to quality of life
• Improved retention in care
• Better referral
• Improved informed clinical decision-making
• Improved monitoring of change over time
• Justification for spending and informing service design
• More accurate data on patient's ART experience

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:

• Quality of life
• Information needs - eg. understanding viral load and HIV management
• Psychological well-being - including stigma
• Physical health - including pain, cognitive function and symptom burden
• Socioeconomic well-being
• Social factors - interpersonal and sexual well-being
• Uptake of and adherence to ART
• Aging with HIV

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

Selecting PROMs

Choosing the right PROM should be guided by the context (clinical setting vs research study) and the reason for use (to identify concerns or measure health status). Other factors include the availability of PROMs in specific languages, and whether it has been validated for use in various contexts and age groups.

Generic scales can be useful to compare the health status of PLWH with the general population. HIV-specific scales are more appropriate to assess HIV-specific concerns (like stigma and ART side-effects) and to guide individualised treatment.

Validated PROMs

A Systematic 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

The Positive Outcomes PROM is 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

No tools validated specifically for children and adolescents and for people aging with HIV

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.

Psychometric Properties

Since PROMs are heavily dependent on the patient's interpretation of questions and their ability to answer truthfully (without influences), cross-cultural differences are very important to consider. Countries with laws against certain high risk practices could result in patients under reporting such behaviours. Interpretation of concepts also vary across cultures, meaning simply translating questions could influence the validity of a PROM scale.

It is of vital importance to include PLWH in all the stages of developing PROMs to ensure that these tools are able to accurately capture patient experiences.

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. PROMs can be incorporated into routine clinical care as a screening tool to achieve consultations that are focused on the patient's current concerns.

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 and pain experiences.

Public Health Specialists involved in service and program design, can use PROMs to inform resource allocation and to monitor efficiency of HIV-care programmes.

Conclusion

PROMs should be incorporated in the management of PLWH to facilitate patient-centred care and holistic management. These tools can provide insight into patient experiences and help identify patient priorities. There is however a paucity of HIV specific PROMs available, and new PROMs need to be developed. Patient involvement and contextual/cultural adaptations will be essential to ensure wide usability and acceptability of PROMs in PLWH.

Resources

• Positive Outcomes HIV PROM
• x

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1. numbered list
2. x