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Nearly every figure about recovery after cancer, for fatigue, for quality of life, for how a body works after treatment, comes from a questionnaire somebody filled in about themselves. That is a strength, because nobody else can report how a person feels, and a limit, because a questionnaire only measures what it asks about and only from the people who answered it.
A patient-reported outcome is any report about a person's health that comes straight from that person, with nobody else interpreting it. The recovery literature rests on them almost entirely. When a trial says exercise improved quality of life, or that fatigue was better at twelve weeks, the thing that moved was a score on one of a small number of questionnaires, and this page names them so a reader can tell which one produced a number they are being shown.
The instruments divide into four families. Cancer-specific profiles measure several areas at once and give a score for each: the EORTC QLQ-C30 in Europe and most international trials, and the FACT-G and its FACIT relatives in North America. Generic preference measures reduce health to one number so that different conditions and treatments can be compared and costed: the EQ-5D. Symptom measures ask about one side effect at a time in the patient's own words rather than a clinician's grading: PRO-CTCAE. Condition-specific measures ask about one thing in detail: BREAST-Q after breast surgery, FACT-Cog for memory and concentration, the Fear of Cancer Recurrence Inventory, the lymphoedema scales.
Three things follow from all of this being self-report, and all three matter when reading a figure.
First, a questionnaire measures what it asks. The QLQ-C30 has one two-item cognitive scale; it cannot tell you whether somebody's memory has recovered in the way a neuropsychologist's battery can, and the International Cognition and Cancer Task Force recommends objective tests alongside, because self-reported and measured cognition correlate weakly.
Second, a score on its own means nothing without a yardstick. The difference that counts as meaningful has been estimated separately for most of these instruments and differs by scale, by cancer, by direction of change and by the method used to estimate it; that work is set out on the minimally important difference record.
Third, the people who answer are not the people who do not. Trials that measure quality of life lose questionnaires exactly when people are most unwell, so the remaining scores drift upwards for a reason that has nothing to do with the treatment. Who is not asked at all, and what that does to the evidence base, is on its own record here.
These instruments are also regulated objects. The US Food and Drug Administration's Oncology Center of Excellence has argued for measuring three separable things in cancer trials, symptomatic adverse events, physical function and disease-related symptoms, rather than relying on a single multi-item quality-of-life score, and that framing now shapes which instruments appear in trial protocols.
A patient-reported outcome measure is a set of items with a fixed recall period, a fixed response scale and a published scoring algorithm, validated by showing that the items hang together (internal consistency), that repeat administration gives the same answer in a stable person (test-retest reliability), that scores separate groups known to differ (construct validity) and that they move when the person's state moves (responsiveness).
Query for this technology: (TITLE:"How recovery is measured: the questionnaires behind the numbers" OR ABSTRACT:"How recovery is measured: the questionnaires behind the numbers") 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 How recovery is measured: the questionnaires behind the numbers, 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 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, Walking, gripping and standing up: the tests that take five minutes, Patients lack understanding, navigation and agency and the tags rejuvenation, survivorship, measurement.
Shares Walking, gripping and standing up: the tests that take five minutes, Cancer-related fatigue (tiredness), Late effects and survivorship toxicity, Survivorship and late effects are neglected and the tags rejuvenation, survivorship, measurement.
Shares The questionnaires that were never returned, and the people never asked, Walking, gripping and standing up: the tests that take five minutes, Who misses out on recovery care, measured, Quality of life and the tags rejuvenation, survivorship, measurement.
Shares FACT-G and the FACIT family: the other main questionnaire, Cancer-related fatigue (tiredness), Quality of life, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship.
Shares EQ-5D: health reduced to one number, and what that number is for, Who misses out on recovery care, measured, Quality of life, Survivorship care and late-effects surveillance and the tags rejuvenation, survivorship, measurement.
Shares Walking, gripping and standing up: the tests that take five minutes, Who misses out on recovery care, measured, Cancer-related fatigue (tiredness), Late effects and survivorship toxicity and the tags rejuvenation, survivorship, measurement.
Shares Measuring lymphoedema: tape, bioimpedance and the quality of life scales, Walking, gripping and standing up: the tests that take five minutes, Who misses out on recovery care, measured, Quality of life and the tags rejuvenation, survivorship, measurement.