HIV-Specific Patient Reported Outcome Measures: A Systematic Review of Psychometric Properties (Preprint)

Abstract

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.