According to Wohl, the clinical focus with modern antiretroviral regimens goes beyond getting viral loads suppressed and concerns about safety and is now about understanding the experience of people living with HIV (PLHIV) who are on life-long medications.
“The future is going to definitely incorporate PROs as part of the work we’re doing,” said Wohl. “Until there is a cure, people will be taking these medications for decades. So, if there’s a bothersome symptom, even if it’s mild, and we can avoid that, it’s incumbent upon us to try to do that. We need to understand what it’s like to be on these medications,” he added.
Professor Wohl emphasised that PROs are not simply a series of random questions directed at waiting room patients. Good clinical research demands that any measurement tool must first be clinically validated; preferably within the specific cohort for whom it is intended. Validation is essential, not only for guiding the types of questions that PLHIV should be asked in relation to specific issues, but also for making better sense of what insights such questions might convey.
There are now number of well-validated generic and disease-specific tools available to capture PROs. “These are well studied instruments that many of us can implement right now,” said Wohl.
View the interviews with Professor David Wohl
How PROs might become part of clinical care?
PROs – validated reliable and ready for use today.