CTN 283: the I-Score Study

About The Study

The aim of this study is to create a patient questionnaire that will help to determine, from the point of view of people living with HIV, how easy or hard it is to stay on antiretroviral treatment (ART). The purpose of the questionnaire will be to signal the reasons patients feel make taking ART difficult or inconvenient. This questionnaire will be filled out electronically, theory-based, and easy to use. Importantly, it aims to help doctors discuss and address treatment problems with their patients, and will help both doctors and researchers better understand the impacts of ART on patients.

About The Disease

We are realizing more and more how important getting the patient’s point of view is in clinical HIV research and practice. The success of ART (e.g. decreased viral load, improved immunity) depends greatly on consistent adherence (taking the medication as directed, usually daily). Staying on ART, however, is a complex practice that can change over time and be affected by many different factors (e.g. characteristics of the drug regimen, beliefs about medications, daily schedule, financial situation, social and cultural context).

Once started, treatment must usually be continued for life and follow a schedule as closely as possible (adherence). It is important, therefore, that medical staff be aware of the factors that could affect a patient’s adherence so that care can be adapted to best suit their needs. However, some studies suggest that patient-provider discussion of adherence could be improved. An approach based on providing information on what individual patients see as obstacles to following their treatment schedule and what they struggle with can help to better orient discussions of adherence or even to modify treatments so that they work best for different people.

Study Approach

Over two years, this study will recruit from 10 participating sites in Canada and France. At this time, it is recruiting individuals to take part in a 30-minute interview. The interview will be structured to allow participants to freely express their point of view on the topics covered. The interview questions will focus on the factors that make it difficult to take the medication. A trained interviewer will guide the interview. Participating in the session will take approximately 1 hour, including 15 minutes to first review the content of the consent form, up to 30 minutes for the interview, and 15 minutes to discuss the interview at the end. The interview will involve only the interviewer and the participant and participants will be compensated.