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[edit | edit source]

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 [1]. 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[1]. Furthermore, PROMs have been shown to accurately predict health outcomes (such as mortality, morbidity and health system expenditure) in PLWH[2].

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 person-centred care[1]. 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[3]. Evidence also suggests that holistic care which addresses the various needs of PLWH results in improved virologic outcomes[4].

PROMs are very useful to assess the various interconnected dimensions that affect the well-being of people living with HIV (PLWH). These dimensions include[1]:

  • 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. These tools can help ensure improved responsiveness to needs and subsequent improved care experiences and health outcomes[5].

Overview of PROMs[edit | edit source]

Benefits of PROMs in HIV[edit | edit source]

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[2].

Benefits for patients[6]:

  • Improved patient-clinician communication and joint decision making[2]
  • Able to feel heard and valued
  • Patient empowerment and improved resilience[2]

Benefits for clinicians[6]:

  • Improved identification of concerns that are often missed, especially aspects related to quality of life
  • Improved retention in care[2]
  • Better referral
  • Improved informed clinical decision-making[2]
  • Improved monitoring of change over time
  • Justification for spending and informing service design
  • More accurate data on patient's ART experience[2]

Domains Assessed[edit | edit source]

Various PROMs have been developed for use in PLWH and there is currently no 'gold standard'[6]. 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, shame, depression
  • Physical health - including pain, cognitive function, frailty, fatigue and symptom burden
  • Socioeconomic well-being
  • Social factors - interpersonal and sexual well-being, social support
  • Uptake of and adherence to ART
  • Aging with HIV

Some PROMs measure only one specific domain, while others incorporate multiple domains.

Selecting PROMs[edit | edit source]

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[2].

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[2]. Examples of good generic scales are:

Validated PROMs[edit | edit source]

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[7]. 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[edit | edit source]

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[6].

Validity, reliability and responsiveness have been established for use in adults in the context of European cities [6].

Poz Quality of Life (PozQol)[edit | edit source]

The PozQol is a quality of life measurement tool with demonstrated excellent conceptual validity with good reliability, consistency and temporal stability[7][8]. It was first developed and tested in 2018 in Australia[9] and has since been translated in 16 languages (including Spanish, Korean and French). The English version is however the only version that has been tested for reliability and sensitivity. It measures 4 domains (psychological, social, health, functional) with 13 questions.

People Living with HIV Resilience Scale (PLHIV-RS)[edit | edit source]

PLHIV-RS is a 10-tiems scale, which measures resilience in PLWH. It has proven sufficient content validity and internal consistency[7]. It was developed and tested in Cameroon, Senegal and Uganda[10].

HIV Symptom Index (HIV-SI)[edit | edit source]

This tool can be used to investigate which symptoms are contributing to reduced quality of life in PLWH. It has sufficient content validity and internal consistency, but there is limited evidence of cross-cultural validity[7]. It has been translated in to 40 different languages.

Other[edit | edit source]
  • MOS-HIV: The MOS-HIV has proven good psychometric properties and is widely accepted by healthcare workers[8]. It covers 10 domains and takes about 10min to complete. The validity could be negatively affected by the fact that PLWH were minimally involved during the development of this tool[8]. It has been validated in Spanish
  • PROQOL-HIV: A review concluded that this tool is more useful than the MQOL-HIV[8]. It is however rather long and therefore not very practical for clinical use.
  • WHOQOL-HIV BREF: Validated in Spanish

Challenges[edit | edit source]

There are various challenges when it comes to implementing the use of PROMs in PLWH:

  • Resistance from medical personnel who find it too time consuming or do not believe in its usefulness[8].
  • Insufficient human resources to administer PROMs
  • A lack of simple, easy to understand questionnaires
  • Cultural, contextual and language diversity requiring context-specific tool validation or development

Shortcomings of Available PROMs[edit | edit source]

  • Many of the PROMs have not been tested and validated for use in multiple contexts/ ethnic groups. 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[1].
  • HIV is often associated with neurocognitive disorders and different tools might need to be developed for PLWH who are not able to accurately complete a PROM[7]
  • No tools validated specifically for children and adolescents and for people aging with HIV[2]

Psychometric Properties[edit | edit source]

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[2].

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.[2]

Role of the MDT team[edit | edit source]

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[1].

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[2]. It is advisable to review questionnaire results with patients during the consultation[8].

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[edit | edit source]

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[2].

Resources[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 1.2 1.3 1.4 1.5 Lohiniva AL, Isosomppi S, Pasanen S, Sutinen J. A qualitative study to identify thematic areas for HIV related patient-reported outcome measures (PROM) and patient-reported experience measures (PREM). Journal of Patient-Reported Outcomes. 2023 Dec;7(1):1-0.
  2. 2.00 2.01 2.02 2.03 2.04 2.05 2.06 2.07 2.08 2.09 2.10 2.11 2.12 2.13 Kall M, Marcellin F, Harding R, Lazarus JV, Carrieri P. Patient-reported outcomes to enhance person-centred HIV care. The lancet HIV. 2020 Jan 1;7(1):e59-68.
  3. Kall M, Marcellin F, Harding R, Lazarus JV, Carrieri P. Patient-reported outcomes to enhance person-centred HIV care. The lancet HIV. 2020 Jan 1;7(1):e59-68.
  4. Bristowe K, Clift P, James R, Josh J, Platt M, Whetham J, Nixon E, Post FA, McQuillan K, Ní Cheallaigh C, Murtagh FE. 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. HIV medicine. 2019 Sep;20(8):542-54.
  5. Bristowe K, Murtagh FE, Clift P, James R, Josh J, Platt M, Whetham J, Nixon E, Post FA, McQuillan K, Cheallaigh CN. The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV. Health and Quality of Life Outcomes. 2020 Dec;18(1):1-0.
  6. 6.0 6.1 6.2 6.3 6.4 Harding R, Jones CI, Bremner S, Bristowe K, West B, Siegert RJ, O’Brien KK, Whetham J, EMERGE Consortium, Horizon 2020, Whetham J, Fatz D. Positive Outcomes: Validity, reliability and responsiveness of a novel person‐centred outcome measure for people with HIV. HIV medicine. 2022 Jul;23(6):673-83.
  7. 7.0 7.1 7.2 7.3 7.4 Wang Z, Zhu Y, Duan X, Kang H, Qu B. HIV-Specific Reported Outcome Measures: Systematic Review of Psychometric Properties. JMIR Public Health and Surveillance. 2022 Dec 8;8(12):e39015.
  8. 8.0 8.1 8.2 8.3 8.4 8.5 Antela A, Bernardino JI, de Quirós JC, Bachiller P, Fuster-RuizdeApodaca MJ, Puig J, Rodríguez S, Castrejón I, Álvarez B, Hermenegildo M. Patient-Reported Outcomes (PROs) in HIV Infection: Points to Consider and Challenges. Infectious Diseases and Therapy. 2022 Oct;11(5):2017-33.
  9. Brown G, Mikołajczak G, Lyons A, Power J, Drummond F, Cogle A, Allan B, Cooper C, O’Connor S. Development and validation of PozQoL: a scale to assess quality of life of PLHIV. BMC Public Health. 2018 Dec;18(1):1-1.
  10. Gottert A, Friedland B, Geibel S, Nyblade L, Baral SD, Kentutsi S, Mallouris C, Sprague L, Hows J, Anam F, Amanyeiwe U. The people living with HIV (PLHIV) resilience scale: development and validation in three countries in the context of the PLHIV stigma index. AIDS and Behavior. 2019 Sep;23:172-82.