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The trials finished years ago and most people being treated for cancer are still not asked their symptoms between appointments. The clearest thing that changed is a United States payment model that now requires practices to collect them.
A reader can reasonably ask why, if weekly symptom reporting reliably improves how people feel, it is not simply what happens. The answer is in three parts.
What has changed. The Centers for Medicare and Medicaid Services built it into a payment model. The Enhancing Oncology Model "began on July 1, 2023 and added a second cohort on July 1, 2025. The first and second cohorts will run for seven and five years, respectively, both ending June 30, 2030." Participating practices receive "$110 per beneficiary per month (or $140 per beneficiary per month for dually eligible individuals)" and must carry out care redesign activities that include "24/7 access to a clinician with EHR access", "patient navigation", "comprehensive care plans", "screening for social needs" and "collection and monitoring of electronic patient reported outcomes (ePROs)". That is the single most consequential thing to have happened to this evidence: a financial requirement rather than a recommendation. It applies to participating practices in one country, for a defined set of cancer types, and ends in 2030.
Also changed: the regulatory framing of what to measure. The United States Food and Drug Administration's Oncology Center of Excellence argued for separating three concepts in cancer trials, symptomatic adverse events, physical function and disease-related symptoms, rather than relying on one multi-item quality of life score, and PRO-CTCAE was built as the instrument for the first of them. That has changed what appears in trial protocols.
What has not changed. Routine between-visit symptom reporting is not standard practice in most health systems, including those whose own trials produced the evidence. The barriers reported by the investigators themselves are specific and unglamorous: no protected nursing time to work the alerts, software that does not talk to the electronic record, and no reimbursement outside a model like the one above. The PRO-TECT final report lists exactly those, recommending "to protect some nursing effort in future implementations and to integrate the ePRO software with EHR systems", and notes that the trial itself ran without that integration and partly during the COVID-19 pandemic when site staff were pulled away from the coordination roles the intervention relied on.
What this corpus cannot tell you. We could not find a reliable published figure for the proportion of people treated for cancer in any country who are offered routine electronic symptom monitoring outside a trial or a payment model. That number would be the right measure of implementation and we do not have it. Equivalent statements about implementation in the United Kingdom, continental Europe and elsewhere rest on single-centre service reports rather than on a national count, and this record does not pretend otherwise.
The honest summary is that the evidence is a decade old, the mechanism is understood, the cost is low, and the obstacle is that somebody has to be paid to answer the alert.
An intervention whose benefit comes from a human response to an alert cannot be implemented by deploying the software alone. Implementation requires the alert to reach a named person with protected time, the record system to carry the data, and a payer to fund the time, which is why a payment model moved this further than a decade of trial results did.
Query for this technology: (TITLE:"What has actually been implemented since those trials, and what has not" OR ABSTRACT:"What has actually been implemented since those trials, and what has not") 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 What has actually been implemented since those trials, and what has not, not a curated reading list.
Shares PROMIS: the item banks that let a short questionnaire be precise, PRO-CTCAE: side effects graded by the person having them, The questionnaires that were never returned, and the people never asked, Asking people how they are, every week, as a treatment in its own right and the tags rejuvenation, survivorship, measurement, instruments.
Shares PROMIS: the item banks that let a short questionnaire be precise, PRO-CTCAE: side effects graded by the person having them, Asking people how they are, every week, as a treatment in its own right, Electronic patient-reported outcome (ePRO) symptom monitoring and the tags rejuvenation, survivorship, measurement, instruments.
Shares The questionnaires that were never returned, and the people never asked, Asking people how they are, every week, as a treatment in its own right, Quality of life, HR-positive / HER2-negative breast cancer and the tags rejuvenation, survivorship, measurement, instruments.
Shares Asking people how they are, every week, as a treatment in its own right, Quality of life, HR-positive / HER2-negative breast cancer, Colorectal cancer and the tags rejuvenation, survivorship, measurement, instruments.
Shares PROMIS: the item banks that let a short questionnaire be precise, Quality of life, HR-positive / HER2-negative breast cancer, Colorectal cancer and the tags rejuvenation, survivorship, measurement, instruments.
Shares The questionnaires that were never returned, and the people never asked, Telehealth and hospital-at-home in oncology, Asking people how they are, every week, as a treatment in its own right, Real-world evidence and the tags rejuvenation, survivorship, measurement.
Shares Oncology nursing and nurse-led care, Telehealth and hospital-at-home in oncology, Not enough oncologists, nurses, pathologists, physicists, Knowledge reaches practice too slowly and the tags rejuvenation, survivorship, measurement.
Shares Quality of life, HR-positive / HER2-negative breast cancer and the tags rejuvenation, survivorship, measurement, instruments.