Report time toxicity, the days a treatment consumes, in every trial and decision aid
Alongside how many months a treatment adds, patients should be told how many days it takes from them in clinics, infusions, scans and recovery.
Time toxicity (days with in-person healthcare contact) has been proposed as a formal endpoint and, when reanalysed from trials of drugs offering weeks of benefit, can consume much of the survival gain. The proposal is that trials report days at home versus days in contact with healthcare for each arm, that regulators and guideline bodies display it, and that decision aids present it alongside survival and side-effects.
- Patients lack understanding, navigation and agency · Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
- Toxicity and quality of life are undervalued · Trials measure how long people live, not how they live. Side-effects are under-reported and under-treated.
Pages like this
not linked directly; found by shared links- IdeaTime to treatment failure and quality of life as co-primary endpoints in non-curative trials
Shares Patients lack understanding, navigation and agency, Overall survival (OS), Progression-free survival (PFS), Toxicity and quality of life are undervalued.
- IdeaReport time toxicity, the days spent in healthcare, as a standard outcome for older patients
Shares Overall survival (OS), Progression-free survival (PFS), Toxicity and quality of life are undervalued.
- IdeaSeamless phase 2/3 with pre-registered go rules as the default for new agents
Shares Overall survival (OS), Progression-free survival (PFS).
- IdeaDose adjustments driven by patients' own symptom reports, tested against clinician judgement
Shares Patients lack understanding, navigation and agency, Toxicity and quality of life are undervalued.
- IdeaTolerability as a co-primary endpoint with its own label claim
Shares Progression-free survival (PFS), Toxicity and quality of life are undervalued.
- IdeaQuality-adjusted survival reported in every trial publication and label
Shares Overall survival (OS), Toxicity and quality of life are undervalued.
- IdeaProvisional prices for surrogate-endpoint approvals, reset when survival data arrive
Shares Overall survival (OS), Progression-free survival (PFS).
- IdeaWeekly symptom check-ins with automatic alerts as standard of care on treatment
Shares Patients lack understanding, navigation and agency, Toxicity and quality of life are undervalued.