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Doctors record only part of what patients suffer. Make it compulsory that patients report their own side-effects in every trial used to approve a drug, and that those data are published next to the doctor-graded ones.
Concordance between clinician-graded CTCAE and patient-reported symptoms is poor, with clinicians systematically under-reporting frequency and severity of fatigue, nausea, neuropathy and diarrhoea. The NCI PRO-CTCAE library provides validated items. The proposal is a regulatory requirement that registrational oncology trials collect a core PRO-CTCAE set with weekly frequency during treatment, and that results appear in the primary publication and public assessment report in a standard table.
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
Shares Basch: asking patients to report symptoms online during chemotherapy improved survival, Toxicity and quality of life are undervalued.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.
Shares Agree what to measure, so the next systematic review can pool rather than narrate, The field cannot pool its own studies, because it has not agreed what to measure.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.
Shares Trial modernisation roadmap: the randomised trial → platforms and adaptive designs → decentralised, pragmatic and always-on, Toxicity and quality of life are undervalued.
Shares Agree what to measure, so the next systematic review can pool rather than narrate, The field cannot pool its own studies, because it has not agreed what to measure.