Background The management of people living with HIV and AIDS is multidimensional and complex. Using patient-reported outcome measures (PROMs) has been increasingly recognized to be the key factor for providing patient-centered health care to meet the lifelong needs of people living with HIV and AIDS from diagnosis to death. However, there is currently no consensus on a PROM recommended for health care providers and researchers to assess health outcomes in people living with HIV and AIDS. Objective The purpose of this systematic review was to summarize and categorize the available validated HIV-specific PROMs in adults living with HIV and AIDS and to assess these PROMs using the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) methodology. Methods This systematic review followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. A literature search of 3 recommended databases (PubMed, Embase, and PsychINFO) was conducted on January 15, 2021. Studies were included if they assessed any psychometric property of HIV-specific PROMs in adults living with HIV and AIDS and met the eligibility criteria. The PROMs were assessed for 9 psychometric properties, evaluated in each included study following the COSMIN methodology by assessing the following: the methodological quality assessed using the COSMIN risk of bias checklist; overall rating of results; level of evidence assessed using the modified Grading of Recommendations, Assessment, Development, and Evaluation approach; and level of recommendation. Results A total of 88 PROMs classified into 8 categories, assessing the psychometric properties of PROMs for adults living with HIV and AIDS, were identified in 152 studies including 79,213 people living with HIV and AIDS. The psychometric properties of most included PROMs were rated with insufficient evidence. The PROMs that received class A recommendation were the Poz Quality of Life, HIV Symptom Index or Symptoms Distress Module of the Adult AIDS Clinical Trial Group, and People Living with HIV Resilience Scale. In addition, because of a lack of evidence, recommendations regarding use could not be made for most of the remaining assessed PROMs (received class B recommendation). Conclusions This systematic review recommends 3 PROMs to assess health outcomes in adults living with HIV and AIDS. However, all these PROMs have some shortcomings. In addition, most of the included PROMs do not have sufficient evidence for assessing their psychometric properties and require a more comprehensive validation of the psychometric properties in the future to provide more scientific evidence. Thus, our findings may provide a reference for the selection of high-quality HIV-specific PROMs by health care providers and researchers for clinical practice and research.
BACKGROUND The management of people living with HIV/AIDS (PLWHA) is multidimensional and complex. It is increasingly recognized that the use of patient reported outcome measures (PROMs) is the key to providing patient-centered health care to meet the lifelong needs of PLWHA from diagnosis to the end of life. However, there is no consensus on which PROM should be recommended for healthcare providers and researchers to assess health outcomes of PLWHA currently. OBJECTIVE This review aims to assess HIV-specific PROMs for adult PLWHA using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. METHODS This systematic review was guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) statement. The literature search was conducted in 3 recommended databases (PubMed, Embase, and PsychINFO) on January 15, 2021. Eligible studies were included if they assessed any psychometric property of HIV-specific PROMs in adult PLWHA. The PROMs were assessed for 9 psychometric properties, which were assessed in each included study using the COSMIN methodology by assessing (1) the methodological quality assessed using the COSMIN risk of bias checklist, (2) overall rating of results, (3) level of evidence assessed using the modified Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach, and (4) level of recommendation. RESULTS A total of 88 PROMs in 8 categories were identified, assessing the psychometric properties of PROMs for adult PLWHA in 152 studies involving 79213 PLWHA. The psychometric properties of the majority of included PROMs were rated with insufficient evidence. The PROMs that received class A recommendation was the Poz Quality of Life, HIV Symptom Index or Symptoms Distress Module of the ACTG, and People Living with HIV Resilience Scale. In addition, due to insufficient evidence, most of remaining assessed PROMs cannot make recommendations regarding their use (received class B recommendation). CONCLUSIONS This systematic review recommended 3 PROMs to assess health outcomes of adult PLWHA, however, they all have some shortcomings. It is necessary to conduct a more thorough assessment of the psychometric properties of existing PROMs. These findings may provide a reference to the selection of high-quality HIV-specific PROMs by healthcare providers and researchers for clinical practice and research.
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