I've decided that when researchers say a treatment is "well tolerated" it actually means "I can tolerate my patients having toxicity" and nothing to do with what the patient thinks. We can only make such a statement if we use patient-reported outcome or experience measures. - ThreadSky

profiand.bsky.social • 88 days ago

I've decided that when researchers say a treatment is "well tolerated" it actually means "I can tolerate my patients having toxicity" and nothing to do with what the patient thinks. We can only make such a statement if we use patient-reported outcome or experience measures.

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barttels2.bsky.social•88 days ago

On another platform, Bishal Gyawali is famous for laying down the law that *only patients* can state if a treatment is well-tolerated.

profiand.bsky.social•88 days ago

It’s also unnecessary. You can comment on frequency of events, you can compare those to other studies, but let the readers make their own interpretations. Don’t as investigators put a subjective and probably biased judgement on it and tell the audience what they should think.

craiggedye.bsky.social•88 days ago

Someone made up the CTCAE criteria. Someone had to. Standardisation is essential for data comparison. But they don't capture the experience of living. Grade 3 amylase is an irrelevant blood test 99% of the time, whereas grade 2 fatigue or worse, grade 2 xerostomia may cause significant suffering.

profiand.bsky.social•88 days ago

Maybe CTCAE v6 will include "spontaneous combustion" so that there is finally a toxicity that might not be considered "well tolerated."

Although even then grade 2* will be overlooked.

(* Flames affecting a single limb, local intervention indicated, limiting age-appropriate instrumental ADL)

craiggedye.bsky.social•87 days ago

Coincidentally that's the third slide of my talk for the @anzuptrials.bsky.social #prostatecancer #PCSM MasterClass in about 3 minutes time...

ravimadan.bsky.social•88 days ago

Toxicity it’s is in the “eye of the beholder…”?

Definitely an issue among many where narratives have increasingly over taken data at #oncology meetings and even in publications

profiand.bsky.social•88 days ago

That’s a great phrase, I will use that with your permission.

ravimadan.bsky.social•87 days ago

Sure! Not entirely original ☺️ but probably too true in clinical trials…

profiand.bsky.social•88 days ago

I read a trial report today calling the treatment "well tolerated" when more than 50% of participants had grade 3 or higher adverse events.

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