Time to treatment failure and quality of life as co-primary endpoints in non-curative trials
For treatments that will not cure, what matters is how long the treatment keeps working without becoming unbearable, and how the person feels. Trials should measure both of those as their main results.
In palliative-intent settings, trials adopt time to treatment failure (progression, death or discontinuation for toxicity or patient choice) together with a validated QoL instrument (EORTC QLQ-C30 or disease module) analysed as time to definitive deterioration, as co-primary endpoints, with OS as a key secondary. PFS alone rewards drugs that delay scan progression while making patients feel worse.
- Trial design, endpoints and cost · A phase 3 trial takes years and hundreds of millions of dollars, and often answers a question that has already moved on.
- 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.
- Patients lack understanding, navigation and agency · Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
Pages like this
not linked directly; found by shared links- IdeaReport time toxicity, the days a treatment consumes, in every trial and decision aid
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), Trial design, endpoints and cost, 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), Trial design, endpoints and cost.
- IdeaTolerability as a co-primary endpoint with its own label claim
Shares Progression-free survival (PFS), Trial design, endpoints and cost, Toxicity and quality of life are undervalued.
- PersonRose Kushner
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost, Toxicity and quality of life are undervalued.
- IdeaPatient panels approve trial burden and endpoints as a condition of funding
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
- IdeaQuantitative patient preference studies set the benefit-risk bar before phase 3
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
- IdeaWin-ratio endpoints that weigh survival, toxicity and quality of life together
Shares Overall survival (OS), Progression-free survival (PFS), Trial design, endpoints and cost, Toxicity and quality of life are undervalued.