# How recovery is measured: the questionnaires behind the numbers

Source: https://onco.cc/technologies/rejuv-measure-patient-reported-outcomes/  
OnCo record `rejuv-measure-patient-reported-outcomes` (Technology). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Summary

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.

## Fields

- Kind: Technology
- Status: standard-of-care
- Last checked: 2026-10-02
- Tags: rejuvenation; survivorship; measurement; instruments
- Principle: 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).
- Strengths: Only the person can report how they feel, so self-report is the correct instrument for symptoms and function; Standardised, scored and translated, so results from different countries can be pooled; Regulators and guideline bodies now expect them in cancer trials
- Limitations: Measures only what the items ask about; Scores from people too unwell to answer are missing, and they are the ones who matter most; Self-reported cognition correlates weakly with measured cognition; Reading level and translation limit who can answer at all

## Sources

- Wikipedia: https://en.wikipedia.org/wiki/Patient-reported_outcome
- Aaronson et al., The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology (JNCI 1993): https://doi.org/10.1093/jnci/85.5.365
- Cella et al., The Functional Assessment of Cancer Therapy scale: development and validation of the general measure (JCO 1993): https://doi.org/10.1200/JCO.1993.11.3.570
- Cella et al., The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008 (J Clin Epidemiol 2010): https://doi.org/10.1016/j.jclinepi.2010.04.011
- Basch et al., Development of the National Cancer Institute's patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) (JNCI 2014): https://doi.org/10.1093/jnci/dju244
- Herdman et al., Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L) (Qual Life Res 2011): https://doi.org/10.1007/s11136-011-9903-x
- Kluetz et al., Focusing on core patient-reported outcomes in cancer clinical trials: symptomatic adverse events, physical function, and disease-related symptoms (Clin Cancer Res 2016): https://doi.org/10.1158/1078-0432.CCR-15-2035
- Wefel et al., International Cognition and Cancer Task Force recommendations to harmonise studies of cognitive function in patients with cancer (Lancet Oncol 2011): https://doi.org/10.1016/S1470-2045(10)70294-1

## Connected records

- technologies: [Asking people how they are, every week, as a treatment in its own right](https://onco.cc/technologies/rejuv-measure-epro-as-treatment/), [BREAST-Q and the Q-portfolio: measuring what an operation left behind](https://onco.cc/technologies/rejuv-measure-breast-q/), [Electronic patient-reported outcome (ePRO) symptom monitoring](https://onco.cc/technologies/epro-symptom-monitoring/), [EORTC QLQ-C30: the questionnaire most cancer trials use](https://onco.cc/technologies/rejuv-measure-eortc-qlq-c30/), [EQ-5D: health reduced to one number, and what that number is for](https://onco.cc/technologies/rejuv-measure-eq-5d/), [FACT-G and the FACIT family: the other main questionnaire](https://onco.cc/technologies/rejuv-measure-fact-and-facit/), [Measuring fear of recurrence: the FCRI and its cut-off](https://onco.cc/technologies/rejuv-measure-fear-of-recurrence-inventory/), [Measuring lymphoedema: tape, bioimpedance and the quality of life scales](https://onco.cc/technologies/rejuv-measure-lymphoedema/), [Measuring memory and concentration after treatment](https://onco.cc/technologies/rejuv-measure-cognitive-function/), [PRO-CTCAE: side effects graded by the person having them](https://onco.cc/technologies/rejuv-measure-pro-ctcae/), [PROMIS: the item banks that let a short questionnaire be precise](https://onco.cc/technologies/rejuv-measure-promis/), [Survivorship care and late-effects surveillance](https://onco.cc/technologies/survivorship-care-plan/), [The questionnaires that were never returned, and the people never asked](https://onco.cc/technologies/rejuv-measure-missing-data-and-who-is-not-asked/), [Walking, gripping and standing up: the tests that take five minutes](https://onco.cc/technologies/rejuv-measure-functional-tests/), [What a difference has to be before a person would notice it](https://onco.cc/technologies/rejuv-measure-minimally-important-difference/), [Who misses out on recovery care, measured](https://onco.cc/technologies/rejuv-access-who-misses-out/)
- cancers: [Colorectal cancer](https://onco.cc/cancers/colorectal/), [HR-positive / HER2-negative breast cancer](https://onco.cc/cancers/breast-hr-positive/), [Multiple myeloma](https://onco.cc/cancers/multiple-myeloma/), [Non-small-cell lung cancer](https://onco.cc/cancers/nsclc/), [Prostate cancer](https://onco.cc/cancers/prostate/)
- fronts: [Recovery & Rejuvenation](https://onco.cc/fronts/rejuvenation/), [Supportive Care & Survivorship](https://onco.cc/fronts/supportive-care/)
- terms: [Cancer-related fatigue (tiredness)](https://onco.cc/terms/cancer-related-fatigue/), [Late effects and survivorship toxicity](https://onco.cc/terms/late-effects/), [Quality of life](https://onco.cc/terms/quality-of-life/)
- bottlenecks: [Patients lack understanding, navigation and agency](https://onco.cc/bottlenecks/b-patient-voice/), [Survivorship and late effects are neglected](https://onco.cc/bottlenecks/b-survivorship/), [Toxicity and quality of life are undervalued](https://onco.cc/bottlenecks/b-toxicity-qol/)

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