Patient-Reported Outcomes (PROs) in HIV Infection: Points to Consider and Challenges
Antonio Antela, José Ignacio Bernardino, Juan Carlos López-Bernaldo de Quirós, P Bachiller, María José Fuster‐RuizdeApodaca, Jordi Puig, Silvia Rodríguez, Isabel Castrejón, Beatriz Álvarez, Marta Hermenegildo
Abstract
INTRODUCTION: The aim of this study was to reach consensus on the use of PROs (patient-reported outcome measures) in people living with HIV (PLHIV). METHODS: A scientific committee of professionals with experience in PROMs methodology issued recommendations and defined the points to support by evidence. A systematic review of the literature identified the coverage, utility, and psychometric properties of PROMs used in PLHIV. A Delphi survey was launched to measure the degree of agreement with the recommendations of a group of practicing clinicians and a group of patient representatives. RESULTS: Four principles and ten recommendations were issued; however, the results of the Delphi showed significant differences in the opinion between health professionals and PLHIV, and polarization within collectives, hampering consensus. CONCLUSIONS: Despite a wealth of evidence on the benefit of PROMs, there are clear barriers to their use by healthcare professionals in HIV care. Intervention on these barriers is paramount to allow truly patient-centered care.