Key takeaways from ISOQOL’s 29th Annual Conference

Last week, our team was delighted to sponsor and attend the International Society for Quality of Life Research (ISOQOL)’s 29th Annual Conference in Prague. Each year we’re thrilled to meet clients and partners at this event. RWS is actively involved in several of ISOQOL’s Special Interest Groups (SIGs), such as the Translation and Cultural Adaptation SIG, where we work closely with other industry experts to help define and shape guidelines related to translation, linguistic validation, cognitive debriefing, cultural adaptation, and Clinical Outcome Assessment (COA) user experience. This year’s event focused on “redefining boundaries—breaking new ground in patient-centered outcomes research.”

 

The life sciences community is constantly progressing toward improved patient-centricity in clinical trials and practice. Today’s sponsors and their partners strive to make participation easier, safer, and clearer for patients. Regulatory bodies have intervened to help ensure that patients can understand and access the results of their trials. We’ve seen that a focus on patients doesn’t just improve trial participants’ experience—it also improves outcomes.

 

Here are a few of our takeaways from the conference.

The event featured discussions on multiple topics across clinical trials and practices, but one theme came up again and again: breaking new ground in patient-centricity specifically for children and adolescents. For example, one of our research presentations focused on evaluating the validity of Patient-Reported Outcome response choices in pediatric cancer patients and their parents through the use of ranking tasks. The research, carried out in conjunction with the National Cancer Institute, found that adding a simple ranking task to traditional cognitive debriefing approaches with patients and caregivers could help to further evaluate the clarity of PRO response choices across different languages.

Today’s clinical trials feature tools and instruments—like wearable devices—that enable continuous data collection. That’s a huge win for clinical researchers, as more frequent data collection points allow them to analyze the entire scope of a patient’s daily experience with their disease or condition. A more comprehensive data picture allows for more accurate analysis—and that, in turn, can ultimately lead to better clinical outcomes for patients.

Being truly patient-centric means embracing diversity and striving to be inclusive of all patients, regardless of their age, culture, language, gender identity, or ability. In close alignment with this principle, our team presented research on the challenges of and solutions for translating gender-neutral language across target languages for Patient Reported Outcomes (PROs). This research aimed to assess the level of difficulty of gender-neutral COA translation across 25 languages.

 

Across all our research, we see the importance of tailoring instruments to patient populations with varying needs and preferences. We know that the point of PROs is to receive patient feedback during a trial and improve the treatment’s efficacy and safety. We know, too, that tailoring PRO translations so multiple populations of patients feel seen and understood results in an improved patient experience, and, as a result, better data collection.

The ISOQOL Annual Conference gives our team the opportunity to witness the culmination of research that has been carried out by academics and experts in the field of Health Economics and Outcomes Research over the past year. It’s an exciting time to regroup and share knowledge, work through challenges and have fun connecting on a social level, and this year was no exception.

 

We look forward to sharing updates on the work we are doing with ISOQOL throughout the coming year to support best practices in clinical outcomes assessments.

 

For a copy of the research papers mentioned in the article and to learn more about the work we do in the COA and clinical space, reach out to our team today.