Despite Benefits, Barriers Persist With the Use of Patient-Reported Outcomes in HIV


Although clinicians cited lack of time as a reason for not using patient-reported outcomes, patients with HIV viewed their use very positively.

Patient-reported outcome (PRO) measures (PROMs) in HIV should be differentiated between newly diagnosed patients and follow-up efforts, according to a committee of experts whose conclusions were published in Infectious Diseases and Therapy.

PROs in HIV are designed to assess symptoms, health behaviors, and life circumstances associated with the disease and comorbidities resulting from treatment, according to the study. They tend to focus primarily on specific aspects of health and treatment that can only be elicited through direct conversations with patients, such as psychological concepts or non-specific symptoms that are not obvious to observers (fatigue, anxiety, etc).

PROs also allow experts to evaluate other important aspects, such as adherence to antiretroviral therapy (ART), possible risky sexual behaviors, stigmatization, and depression. Additionally, use of PROs can improve clinician-patient communication on more complex issues, such as mental and sexual health.

Measuring PROs is usually done with PROMs, including questionnaires that can be generic or specifically validated for a specific disease. These questionnaires provide data for patient evaluation and follow-up, clinical decision-making, assessment, coping with the disease, and evaluation of therapeutic efficacy and quality of care provided.

In HIV specifically, the advancement of treatments such as ART and its associated toxicity have had significant impacts on the health-related quality of life of patients living with HIV. Both the European Medicines Agency and the FDA recommend the use of PROMs for the evaluation and optimization of new treatment, and PROMs can also play a decisive role in the choice of ART regimens.

However, incorporating PROMs into clinical practice has been shown to be challenging. One key reason for this, according to the experts, includes the reluctance of some specialists to use PROMs.

In an effort to better understand these challenges and ways that clinicians can incorporate PROMs in HIV, a team launched the PROMETEO project to reach expert consensus on incorporating these measures. The team used typical consensus methodology, including nominal group meetings, systematic literature review, and Delphi survey.

To address all important aspects of the issue, a multidisciplinary panel was established with 6 infectious disease specialists, a rheumatology specialist, a hospital pharmacist, and a psychosocial researcher.

The panel created 10 recommendations for the use of PROs in HIV:

  • Use questionnaires with proven validity.
  • Multidimensional questionnaires should be used at the time of diagnosis or when there are major changes in the patient’s treatment or situation.
  • Once a specific problem has been identified, specific questionnaires should be used for follow-up.
  • Clinicians should identify factors that interfere in the health care professional-patient relationship that can secondarily affect treatment adherence.
  • Health care should be individualized using questionnaires that account for the epidemiological, social, and health profile of patients.
  • Multidimensional PROs can help decide the best consultation model (face-to-face, telematics) for each patient.
  • Patients should complete the questionnaires in a quiet environment and ensures confidentiality.
  • Once completed, clinicians should review the questionnaires with the patient during the consultation.
  • Clinicians should convey the importance of completing the questionnaires to the patient. Training in completion and the use of reminders should be part of patient education.
  • Digital technology can be very useful, but clinicians must also remember that specific patients may not have access or ability to use such technology.

The project findings revealed a significant perception gap regarding the use of PROMs in the consultation room between patients and their physicians, or polarized perspectives among both groups. Reasons given by health care professionals for not implementing PROMs included the lack of time and lack of other professionals to be in charge of their completion. The research also found that health professionals overlook information on the usefulness and benefits of PROMs specific to HIV in multiple health domains, including quality of life, adherence, social factors, or satisfaction with care.

However, patients were found to positively value PROMs and demand the use of simple tools appropriate to their situations. The panelists concluded that the barriers to use of PROMs are solvable, and their use should be encouraged to improve the quality of life of patients with HIV.


Antela A, Bernardino JI, de Quiros JC, Bachiller P, et al. Patient-reported outcomes (PROs) in HIV infection: Points to consider and challenges. Infectious Diseases and Therapy. September 6, 2022. Accessed October 24, 2022.

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