👏 A powerful two days focused on what truly matters: the patient voice in #CancerResearch.
Let’s keep pushing for trials that reflect what patients value most. 🌻
🔎 Read the 6th @eortc.org #QualityofLife Conference wrap-up here: www.eortc.org/blog/2025/05...
#QoLConf25 #GivingVoice2Patients
The EORTC #QoLConf25 is a wrap!
Over 2 days in Barcelona, global experts united to put patients at the centre of #oncology research.
🙏Thanks to all the speakers, participants, and the organising team!
👉 www.eortc.org/blog/2025/05...
@madelinepe.bsky.social @qol.eortc.org
#GivingVoice2Patients
🎀 That’s a wrap on the 6th @eortc.org QoL Conference in Barcelona!
A huge thank you to all our incredible speakers and chairs, engaged participants, and dedicated organisers for making these two days a true success. 👏
#QoLConf25 #QualityofLife #CancerResearch #GivingVoice2Patients
🔚 SESSION 9 closed the day with insights into electronic & digital outcome assessments in cancer trials and care
Thanks to Paul O’Donohoe, Bernhard Holzner & Katarzyna Wac
Chaired by @bettinaryll.bsky.social & Lonneke van de Poll-Franse
#QoLConf25 #CancerResearch
📱 Digital health technologies are shaping the future of QoL assessment—offering new digital endpoints and improving clinical outcomes. A promising path for patient-centered care.
- K. Wac delivering the closing presentation at @eortc.org #QoLConf25
#QualityofLife #GivingVoice2Patients
💪 Bernhard Holzner tackled the real-world challenges of integrating electronic PROs & digital health in clinical care. Key takeaways: sustainability & tested facilitators.
@eortc.org #QoLConf25
#GivingVoice2Patients
💻 Implementing PROs and digital health in clinical trials comes with challenges—flexibility, regulatory needs, and reducing missing data are all important aspects to consider.
- P. O'Donohoe @eortc.org #QoLConf25
#GivingVoice2Patients #CancerResearch
🔚 SESSION 8 focused on PROs in real-world evidence and patient care
Speakers included Michael Brundage, Galina Velikova, August Zabernigg, Lonneke van de Poll-Franse, @bettinaryll.bsky.social & Erik Briers
Chairs: Anja Schiel & Jaap Reijneveld
#QoLConf25 #CancerResearch
🌍 Erik Briers (Europa Uomo) shared powerful insights on using PROs as real-world data—highlighting the value of evidence-based care through the patient’s eyes.
@eortc.org #QoLConf25
#GivingVoice2Patients #CancerResearch
🌸 Insights from PRIME-ROSE show the value—and challenge—of using PROs in real-world precision medicine trials. Multi-stakeholder input is key to making it work in practice.
@bettinaryll.bsky.social @eortc.org #QoLConf25
#GivingVoice2Patients
🌟 Lonneke van de Poll-Franse shared valuable insights on incorporating PROs in registries. Her talk covered how real-world data can enhance survivorship care and tackle new challenges in an aging population.
@eortc.org #QoLConf25 #GivingVoice2Patients
🌍 PROs in real-world care are valuable—but challenging. Symptoms shift fast, patients tire of forms, and answers aren't always clear. Still, thoughtful design + team support can make HRQoL part of everyday care.
- A. Zabernigg at @eortc.org #QoLConf25
#GivingVoice2Patients #CancerResearch
📚 20 years of evidence of symptom monitoring in daily oncology practice. Galina Velikova highlighted how ePROs can improve patient outcomes and streamline clinical workflows.
@universityofleeds.bsky.social
@eortc.org #QoLConf25 #GivingVoice2Patients
🩺 Michael Brundage from Cancer Care Ontario shared the early adoption of Patient-Reported Outcomes (PROs) in clinical practice. He addressed the journey, lessons learned, and the impact on patient care and research.
@ontariohealth.bsky.social
@eortc.org #QoLConf25
#GivingVoice2Patients
🔚 SESSION 7 explored statistical considerations for PROs in cancer trials, from RCTs to Phase 1
Thanks to Corneel Coens, Antoine Regnault, Jammbe Musoro & @christinayap.bsky.social
Chairs: @madelinepe.bsky.social & Naomi Kiyota
#QoLConf25 #CancerResearch
🩺 Phase 1 oncology trials focus on safety—but PROs can add real value. They complement clinician-reported dose-limiting toxicity (DLTs), offering a fuller view of treatment impact. Interest is growing across patients, researchers & regulators.
- @christinayap.bsky.social @eortc.org #QoLConf25
📊 Single Arm Trials (SATs) play a growing role in oncology, especially for rare or late-stage cancers. While interpretation can be tricky, they can be ethically and scientifically sound. The estimand framework helps link questions to clear analysis goals.
- J. Musoro @eortc.org #QoLConf25
🔍 How to ensure a fair comparison between treatment options? Some guidance: tailor the PRO endpoint to the PRO objective you want to demonstrate & consider tolerability as a crucial concept. Ensure you're on the right track from the onset – it's worth it!
- A. Regnault @eortc.org #QoLConf25
📊 PRO data are rich but complex—HRQoL is subjective, and that’s its strength. Clear aims are key. The estimand framework + SISAQOL-IMI guidance help define better objectives and analyses for PROs.
- C. Coens at @eortc.org #QoLConf25
#GivingVoice2Patients #CancerResearch
🔚 SESSION 6 highlighted the role of PROs/HRQOL in regulatory & HTA decision-making.
Thanks to Anja Schiel, Juan García Burgos, Kirsten Janke, Jan Liliemark & Sigrid Klaar.
Chairs: Jan Geissler & Sigrid Klaar
#QoLConf25 #CancerResearch #GivingVoice2Patients
@eortc.org
⚖️ Including Patient-Reported Outcomes (PROs) in trials means balancing effort vs. value—for patients, trial teams, and industry. The big question: will PROs impact product success? Clear, well-collected data are key.
- S. Klaar @eortc.org #QoLConf25
#GivingVoice2Patients #CancerResearch
💡 QoL data might be crucial from a payer’s perspective, helping to determine the value of interventions for resource prioritisation. Utility weights are vital for economic evaluations in clinical trials, and addressing bias in unblinded studies is important.
- J. Liliemark at @eortc.org #QoLConf25
📊 HTA endpoints reflect how patients feel, function, and survive—with HRQoL & symptoms measured by PROs at core. But quality PRO data is still a challenge. Smarter study design can bridge the gap between HTA & regulatory needs.
- K. Janke at @eortc.org #QoLConf25
#GivingVoice2Patients
🌟 Patients know their journey best. Patient Experience Data (PED) should be used throughout medicine development & regulation—especially in oncology. 💡A reflection paper by @ema.europa.eu is coming. Time to make PED standard.
- J. García Burgos speaking at @eortc.org #QoLConf25
#GivingVoice2Patients
📊 Health Technology Assessment (HTA) requires PROs to inform decision-making to promote equitable, efficient & high-quality health systems. The process differs from regulatory assessment and patients' perspectives are paramount throughout.
- A. Schiel at @eortc.org #QoLConf25
#GivingVoice2Patients
☀️ Good morning from Barcelona day 2 of #QoLConf25
Day 1 brought powerful conversations about improving the patient experience in cancer care 💙
Looking forward to another insightful day 🙌.
#CancerResearch
🔚 SESSION 5 examined what makes a PRO score clinically relevant.
Speakers: Jammbe Musoro, Johannes Giesinger & @msztankay.bsky.social explored interpretation, individual change & reference data.
Chaired by Jammbe Musoro & Antoine Regnault.
#QoLConf25 #CancerResearch
📊 Using reference values & norm data to interpret HRQoL data aids in the design of PRO-based research & interpretation of results.
More info on the EORTC Norm Data project & Reference Values can be found on the @eortc.org #QualityofLife Group website: qol.eortc.org
@msztankay.bsky.social #QoLConf25
📏The threshold for meaningful within-patient change (MWPC) = key reference for interpreting PRO score changes in individual patients, helping determine improvement or decline in HRQoL. Researchers should select appropriate thresholds & be transparent about their choices.
- J. Giesinger #QoLConf25
