Patient Reported Outcome Measures for HIV: Difference between revisions

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[[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 <ref name=":0">Lohiniva AL, Isosomppi S, Pasanen S, Sutinen J. [https://jpro.springeropen.com/articles/10.1186/s41687-023-00582-y 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.</ref>. 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<ref name=":0" />. Furthermore, PROMs have been shown to accurately predict health outcomes (such as mortality, morbidity and health system expenditure) in PLWH<ref name=":2" />.   
[[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 <ref name=":0">Lohiniva AL, Isosomppi S, Pasanen S, Sutinen J. [https://jpro.springeropen.com/articles/10.1186/s41687-023-00582-y 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.</ref>. 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<ref name=":0" />. Furthermore, PROMs have been shown to accurately predict health outcomes (such as mortality, morbidity and health system expenditure) in PLWH<ref name=":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 personalised care<ref name=":0" />. 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<ref>Kall M, Marcellin F, Harding R, Lazarus JV, Carrieri P. [https://www.natap.org/2019/HIV/PIIS2352301819303455.pdf Patient-reported outcomes to enhance person-centred HIV care.] The lancet HIV. 2020 Jan 1;7(1):e59-68.</ref>.
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<ref name=":0" />. 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<ref>Kall M, Marcellin F, Harding R, Lazarus JV, Carrieri P. [https://www.natap.org/2019/HIV/PIIS2352301819303455.pdf Patient-reported outcomes to enhance person-centred HIV care.] The lancet HIV. 2020 Jan 1;7(1):e59-68.</ref>. Evidence also suggests that holistic care which addresses the various needs of PLWH results in improved virologic outcomes<ref>Bristowe K, Clift P, James R, Josh J, Platt M, Whetham J, Nixon E, Post FA, McQuillan K, Ní Cheallaigh C, Murtagh FE. T[https://onlinelibrary.wiley.com/doi/10.1111/hiv.12758 owards 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.</ref>.


PROMs are very useful to assess the various interconnected dimensions that affect the well-being of people living with HIV (PLWH). These dimensions include<ref name=":0" />:
PROMs are very useful to assess the various interconnected dimensions that affect the well-being of people living with HIV (PLWH). These dimensions include<ref name=":0" />:
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* Social factors - including stigma and social support
* Social factors - including stigma and social support
* Socio-economic factors - including access to care
* 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.
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<ref>Bristowe K, Murtagh FE, Clift P, James R, Josh J, Platt M, Whetham J, Nixon E, Post FA, McQuillan K, Cheallaigh CN. [https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01462-5 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.</ref>.
 
 
<nowiki>***</nowiki>  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]<ref>Bristowe K, Murtagh FE, Clift P, James R, Josh J, Platt M, Whetham J, Nixon E, Post FA, McQuillan K, Cheallaigh CN. [https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01462-5 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.</ref>.
 
== Overview of PROMs ==
== Overview of PROMs ==


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* Improved patient-clinician communication and joint decision making<ref name=":2" />
* Improved patient-clinician communication and joint decision making<ref name=":2" />
* Improved assessment
* Able to feel heared and valued
* Patient empowerment
* Patient empowerment and improved resilience<ref name=":2" />
* Improved resilience<ref name=":2" />


'''Benefits for clinicians'''<ref name=":1" />''':'''
'''Benefits for clinicians'''<ref name=":1" />''':'''
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* Quality of life
* Quality of life
* Information needs - eg. understanding viral load and HIV management
* Information needs - eg. understanding viral load and HIV management
* Psychological well-being - including stigma
* Psychological well-being - including stigma, shame, depression
* Physical health - including pain, cognitive function and symptom burden
* Physical health - including pain, cognitive function, frailty, fatigue and symptom burden
* Socioeconomic well-being
* Socioeconomic well-being
* Social  factors - interpersonal and sexual well-being
* Social  factors - interpersonal and sexual well-being, social support
* Uptake of and adherence to ART
* Uptake of and adherence to ART
* Aging with HIV
* Aging with HIV


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


=== Selecting PROMs ===
=== 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<ref name=":2" />.  
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<ref name=":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<ref name=":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<ref name=":2" />. Examples of good generic scales are:
 
* WHOQOL-BREF
* SF-36
* EQ-5D


=== Validated PROMs ===
=== Validated PROMs ===
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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   
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   
===== Poz Quality of Life (PozQol) =====
The PozQol is a qualityf of life measurement tool with demonstrated excellent conceptual validity with good reliability, consistency and temporal stability<ref name=":3" /><ref name=":4">Antela A, Bernardino JI, de Quirós JC, Bachiller P, Fuster-RuizdeApodaca MJ, Puig J, Rodríguez S, Castrejón I, Álvarez B, Hermenegildo M. [https://link.springer.com/content/pdf/10.1007/s40121-022-00678-w.pdf Patient-Reported Outcomes (PROs) in HIV Infection: Points to Consider and Challenges.] Infectious Diseases and Therapy. 2022 Oct;11(5):2017-33.</ref>. It was first developed and tested in 2018 in Australia<ref>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.</ref> 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.


===== PROQOL-HIV =====
===== PROQOL-HIV =====
dsfd<ref name=":2">Kall M, Marcellin F, Harding R, Lazarus JV, Carrieri P. [https://www.natap.org/2019/HIV/PIIS2352301819303455.pdf Patient-reported outcomes to enhance person-centred HIV care]. The lancet HIV. 2020 Jan 1;7(1):e59-68.</ref>
A review concluded that this tool is more useful than the MQOL-HIV<ref name=":4" />. It is however rather long and therefore not very practical for clinical use.
 
===== Poz Quality of Life (PozQol) =====


* Sufficient content validity and internal consistency<ref name=":3" />  
dsfsdf<ref name=":2">Kall M, Marcellin F, Harding R, Lazarus JV, Carrieri P. [https://www.natap.org/2019/HIV/PIIS2352301819303455.pdf Patient-reported outcomes to enhance person-centred HIV care]. The lancet HIV. 2020 Jan 1;7(1):e59-68.</ref>


===== People Living with HIV Resilience Scale (PLHIV-RS) =====
===== People Living with HIV Resilience Scale (PLHIV-RS) =====
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''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.''
''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.''
pecialists to use them [23–25]. A review of systematic reviews of PROMs for measuring HRQoL in PLHIV showed that the questionnaires with the best properties were the MOS-HIV, the WHOQOL-HIV BREF, and the PROQOL-HIV [26]. There are validations in Spanish of both the MOS-HIV [27] and the WHOQOL-HIV BREF [14]<ref name=":4" />
===== MOS-HIV =====
The MOS-HIV has proven good psychometric properties and is widely accepted by healthcare workers<ref name=":4" />. 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<ref name=":4" />.


===== HOQOL/HIV-brief =====
===== HOQOL/HIV-brief =====
Line 100: Line 105:
* HIV symptom index
* HIV symptom index


== Shortcomings of Available PROMs ==
== Challenges ==
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<ref name=":4" />.
* 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 ===
'''Positive Outcomes:'''Validated for use in European cities;  
'''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''<ref name=":3" />
''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''<ref name=":3" />


No tools validated specifically for children and adolescents and for people aging with HIV<ref name=":2" />  
No tools validated specifically for children and adolescents and for people aging with HIV<ref name=":2" />
 
=== Reliability ===


=== 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<ref name=":0" />.  
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<ref name=":0" />.  
=== Responsiveness ===


=== Psychometric Properties ===
=== Psychometric Properties ===
Line 122: Line 130:
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<ref name=":0" />.  
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<ref name=":0" />.  


'''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<ref name=":2" />.  
'''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<ref name=":2" />. It is advisable to review questionnaire results with patients during the consultation<ref name=":4" />.  


'''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.
'''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.
Line 133: Line 141:
== Resources  ==
== Resources  ==
*[https://onlinelibrary.wiley.com/action/downloadSupplement?doi=10.1111%2Fhiv.13224&file=hiv13224-sup-0001-AppendixS1.pdf Positive Outcomes HIV PROM]
*[https://onlinelibrary.wiley.com/action/downloadSupplement?doi=10.1111%2Fhiv.13224&file=hiv13224-sup-0001-AppendixS1.pdf Positive Outcomes HIV PROM]
*x
*[https://www.pozqol.org/wp-content/uploads/PozQoL_en.pdf PozQol]
or
 
#numbered list
#x
 
== References  ==
== References  ==



Revision as of 14:05, 1 June 2023

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! (1/06/2023)

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 heared 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:

  • WHOQOL-BREF
  • SF-36
  • EQ-5D

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]

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

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

The PozQol is a qualityf 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.

PROQOL-HIV[edit | edit source]

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.

dsfsdf[2]

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

Sufficient content validity and internal consistency[7]

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

Sufficient content validity and internal consistency[7]

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.

pecialists to use them [23–25]. A review of systematic reviews of PROMs for measuring HRQoL in PLHIV showed that the questionnaires with the best properties were the MOS-HIV, the WHOQOL-HIV BREF, and the PROQOL-HIV [26]. There are validations in Spanish of both the MOS-HIV [27] and the WHOQOL-HIV BREF [14][8]

MOS-HIV[edit | edit source]

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].

HOQOL/HIV-brief[edit | edit source]
HDQ[edit | edit source]
Other[edit | edit source]
  • HIV Stigma Index
  • HIV symptom index

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]

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[7]

No tools validated specifically for children and adolescents and for people aging with HIV[2]

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].

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 2.14 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 8.6 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.