Patient-reported outcomes in HIV: lack of guidance holding back use.

  • Jo Whelan
  • Medical News
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  • Quality of life has been proposed as the “fourth 90” to complement the UNAIDS 90-90-90 targets
  • There is still no “gold standard” for measuring health-related quality of life in people with HIV, and lack of guidance is limiting the use of patient-reported outcomes (PROs)

 “Viral suppression remains an essential goal, but it is not the sole endpoint of HIV care,” a recent Lancet HIV editorial has stated. People living with HIV should not just be surviving but should be living well. The journal has just published a series of three papers entitled “HIV Outcomes Beyond Viral Suppression”.

Dr Meaghan Kall of Public Health England, in collaboration with Professor Richard Harding of Kings College London and authors from France and Spain, is lead author on one of the papers. “Patient-reported outcomes to enhance person-centred HIV care” notes that PROs provide information about a patient’s first-hand experiences that provides a more holistic view of their health and wellbeing than trial data alone.

PROs can be used to instigate and support interventions at clinical, institutional, and population levels to ensure optimal HIV care, the authors continue. However, they are currently not well integrated into routine collection of data on HIV – in part because they are not addressed in national and international guidelines. Expanding their use will require additional research to conclusively link improvements in PROs to improvements in health and clinical care.

PROs offer new opportunities to ensure patients’s voices are at the heart of HIV healthcare, the authors conclude, and people with HIV must be fully involved in developing PROs for use in this setting.

The article reviews the current and future role of PROs in HIV and is available as open access.