HIV-specific patient-reported outcome measures: A systematic review of [sychometric properties


BACKGROUND: The management of people living with HIV/AIDS (PLWHA) is multidimensional and complex. Using patient-reported outcome measures (PROMs) has been increasingly recognized to be the key factor for providing patient-centered healthcare to meet the lifelong needs of PLWHA from diagnosis to death. However, there is currently no consensus on a PROM recommended for healthcare providers and researchers to assess health outcomes in PLWHA. OBJECTIVE: The purpose of this systematic review was to summarize and categorize the available validated HIV-specific PROMs in adult PLWHA 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 Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. Literature search of three 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 adult PLWHA and met the eligibility criteria. The PROMs were assessed for nine psychometric properties, evaluated in each included study following the COSMIN methodology by assessing the following: (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 classified into eight categories, assessing the psychometric properties of PROMs for adult PLWHA, were identified in 152 studies including 79213 PLWHA. The psychometric properties of the majority of the 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 ACTG, and the People Living with HIV Resilience Scale. In addition, because of 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 three PROMs to assess health outcomes in adult PLWHA. 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 to the selection of high-quality HIV-specific PROMs by healthcare providers and researchers for clinical practice and research.


Wang Z, Zhu Y, Duan X, Kang H, Qu B




  • Population(s)
    • General HIV+ population
  • Health Systems
    • Delivery arrangements


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