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Several randomised trials tested asking patients to report symptoms every week, with a nurse alerted when something is bad or getting worse. It reliably improves how people feel and function and cuts emergency visits. Whether it lengthens life did not hold up: two trials found a survival benefit and the largest trial, designed to test exactly that, found none.
This is the one place on this front where a measurement turned out to be an intervention, and it has the best randomised evidence of anything here. It also has an honest negative result in the middle of it, which is given the same prominence as the positive ones.
The first trial. Basch and colleagues randomised 766 people receiving routine outpatient chemotherapy for advanced solid tumours at Memorial Sloan Kettering to report 12 common symptoms on tablet computers, with weekly email prompts at home and email alerts to nurses for severe or worsening symptoms, against usual care. The primary outcome was change in the EQ-5D index at six months. "HRQL improved among more participants in the intervention group than usual care (34% v 18%) and worsened among fewer (38% v 53%)". Emergency visits, hospital admissions and duration of chemotherapy tolerated also favoured the intervention. The 2017 survival analysis of the same trial, published as a research letter in JAMA, reported a longer median overall survival in the symptom monitoring arm; the letter itself is behind a paywall and carries no abstract, so the exact medians are not reproduced here and the reader should take them from the letter rather than from this page.
The lung cancer trial. Denis and colleagues randomised 133 patients with advanced lung cancer who had no evidence of progression after initial treatment to a web-mediated follow-up based on weekly self-scored symptoms, with an automatic alert email to the oncologist when symptoms matched predefined criteria, against routine follow-up with CT scans every three to six months. "The median OS was 19.0 months (95% confidence interval [CI] = 12.5 to noncalculable) in the experimental and 12.0 months (95% CI = 8.6 to 16.4) in the control arm", hazard ratio 0.32 (95% CI 0.15 to 0.67). The mechanism was legible: performance status at the first detected relapse was 0 to 1 for 75.9 per cent in the web arm against 32.5 per cent in the control arm, so more people were well enough to have further treatment. A two-year survival update was published in JAMA in 2019. The trial was small, single-country and unblinded, and the control arm's 12-month median is low, which is the main objection to it.
The largest trial, and the result that did not replicate. PRO-TECT (Alliance AFT-39) cluster-randomised 52 United States community oncology practices and enrolled 1,191 adults being treated for metastatic cancer between October 2017 and March 2020. Patients in the intervention arm completed a weekly survey by internet or automated telephone for up to a year; severe or worsening symptoms triggered alert emails to nurses. The prespecified primary outcome was overall survival at 24 months from the National Death Index, and the final report states that the analysis "found no significant differences for overall survival between arms (hazard ratio, 0.99; P = .86)".
The secondary outcomes of the same trial were positive and were published in JAMA in 2022. At three months, against usual care, mean QLQ-C30 changes favoured the intervention for physical function (mean difference 2.47, 95% CI 0.41 to 4.53), symptom control (2.56, 95% CI 0.95 to 4.17) and health-related quality of life (2.43, 95% CI 0.90 to 3.96), with odds ratios for a clinically meaningful benefit of 1.35, 1.50 and 1.41 respectively. Emergency department visits also favoured the intervention, a mean of 1.02 against 1.30.
The curative-intent trial. eRAPID randomised 508 patients with colorectal, breast or gynaecological cancers starting chemotherapy, mostly with curative intent, to usual care or weekly online symptom reporting with automated severity-dependent advice for 18 weeks. Physical well-being improved at 6 and 12 weeks but not at 18, which was the primary endpoint, so on its own terms this trial was negative. Fewer patients in the intervention arm had a clinically meaningful deterioration in physical well-being at 12 weeks, 47 against 56 per cent; there were no differences in admissions or chemotherapy delivery; and at 18 weeks the intervention arm reported better self-efficacy and better health on the EQ-5D visual analogue scale. The benefit was in the non-metastatic subgroup, not the metastatic one.
What the evidence supports, stated carefully. Routine weekly symptom reporting with a response attached improves physical function, symptom control and quality of life, and reduces emergency visits, consistently across trials and across subgroups. It should not be sold as a way to live longer: the single trial designed and powered to test survival as its primary outcome found a hazard ratio of 0.99.
The part that is easy to forget. None of these trials tested a questionnaire. They tested a questionnaire plus a nurse who read the alert and did something. The PRO-TECT investigators named the absence of protected nursing time as a limitation of their own trial and recommended that future implementations protect it. A system that collects symptoms and routes the alerts nowhere has not been tested and has no reason to work.
Frequent structured self-report detects symptomatic deterioration between scheduled visits, where it would otherwise go unreported until the next appointment or an emergency presentation. A threshold-triggered alert converts that detection into a clinical action, which is where the benefit comes from; the earlier action preserves performance status and avoids unplanned admission.
Query for this technology: (TITLE:"Asking people how they are, every week, as a treatment in its own right" OR ABSTRACT:"Asking people how they are, every week, as a treatment in its own right") AND (cancer OR tumor OR tumour OR oncology OR carcinoma OR lymphoma OR leukemia OR leukaemia OR myeloma OR sarcoma OR melanoma OR glioma). Results are unfiltered search hits about Asking people how they are, every week, as a treatment in its own right, not a curated reading list.
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