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Reposted by Madeline Pe

EORTC Quality of Life Group (QLG) @qol.eortc.org · 21/05/2025

🔁 A must-read from @eortc.org! Eva Gamper et al. make the case for cancer-specific #QualityofLife tools in economic evaluations—crucial in the context of the recent EU HTA reform. 🌍 Read more: www.eortc.org/blog/2025/05... #GivingVoice2Patients @thelancetoncol.bsky.social @madelinepe.bsky.social

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Reposted by Madeline Pe

European Organisation for Research and Treatment of Cancer @eortc.org · 15/04/2025

🔎New in @thelancetoncol.bsky.social: Insights from @ema.europa.eu-EORTC workshop underscore the role of #QualityofLife data in cancer treatment evaluation. It’s not just about survival-it’s also about how patients live. Read more in our press release: www.eortc.org/blog/2025/04... #CancerResearch

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Reposted by Madeline Pe

Elizabeth Eisenhauer @eaeisenhauer.bsky.social · 04/02/2025

My 2nd World Cancer Day post to highlight work of the Common Sense Oncology team. This new publication identifies key principles for randomized trials of new cancer Rx aimed at improving outcomes that matter most to patients www.sciencedirect.com/science/arti...

sciencedirect.com

Common Sense Oncology principles for the design, analysis, and reporting of phase 3 randomised clinical trials

Common Sense Oncology (CSO) prioritises treatments providing meaningful benefits for people with cancer. Here, we describe CSO principles aimed at imp…

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Reposted by Madeline Pe

Laura Lee Johnson @johnsonll.bsky.social · 04/02/2025

Congratulations to @madelinepe.bsky.social + the whole #SISAQOL group. Years ago, had coffee with Madeline and heard the vision. She, Monika, Ahu, Corneel, plus many others made a reality. Thank you for positive work during hard times. A bright part of World Cancer Day www.sisaqol-imi.org

sisaqol-imi.org

SISAQOL – Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life endpoints

Setting International Standards in Analysing Patient-Reported Outcomes and Quality of Life Endpoints Outputs COMING SOON INTERACTIVE TABLE COMING SOON GUIDEBOOK COMING SOON GLOSSAR...

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Reposted by Madeline Pe

Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Excited for a full day of new #SISAQOL recommendations for the statistical analysis of #patientreportedoutcomes in cancer clinical trials!

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Diving into #SISAQOL recommendations. First highlights involve handling death or other intercurrent events. Basically there is no standard approach but need to be clear in the approach that you are using. Some new language here that many folks might not be familiar with…

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Next #SISAQOL highlights involve missing data. Need to separate missing data from intercurrent events, and recommendations reinforce using “completion rate” & “available data rate” - quit using “compliance rate” in your papers! Finally, avoid biased missing data approaches.

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Next #SISAQOL turns to #patientreportedoutcomes in single-arm trials. PRO objectives should be clearly defined & can be descriptive (more common) or comparative to historical control data. Important to consider missing data & incurrent events as in randomized trials.

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Excited that #SISAQOL included recommendations about #dataviz for #patientreportedoutcomes! Graphs vary by audience consistent with prior literature. Include p-values for preplanned tests only, and use consistent y-axis scaling throughout your paper.

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

This #SISAQOL #dataviz recommendation gets a dedicated post. While I agree in general with including sample size, missing data, & incurrent event information on all graphs for clarity, three lines of text per arm may be infeasible for multi-arm trials and may be more readable in a standalone table.

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Last two #SISAQOL #datadiz recommendations: indicate the directionality of PRO scores (what is good/bad, or what is improved/worsened) and use asterisks instead of p-values in graphs for audiences outside of the scientific community.

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Harmonized terms to replace the vague term “MID” from #SISAQOL! Need to be clear about whether you are talking about within-patient change (eg, responder analysis) or three group-level options (mean comparisons within or between groups - see slides).

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

#SISAQOL developed recommendations on how to select a threshold for interpreting PROs and how to report that threshold.

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Coming soon from #SISAQOL for patient advocates & patient research partners: checklist for reviewing PRO measures in protocols, and checklist for reviewing visualizations in cancer clinical trials.

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Coming soon from #SISAQOL: guidebook, interactive table, glossary, patient material, and more! Will be posted on the SISAQOL website. www.sisaqol-imi.org

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Amylou Dueck, PhD @biostatgirl.bsky.social · 04/02/2025

Stakeholder panel at #SISAQOL. Interesting discussion about whether collection of PROs post-progression is feasible, how to make PROs less burdensome, & where to place PROs in the hierarchy of clinical trial endpoints. Universal agreement that SISAQOL moves the field forward!

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